“Dementia: Care in Crisis?” – The Impact of the Redefined Social Care Offer

on People with Dementia in Manchester

Abstract: Due to significant reductions in public spending since the general election in 2010, Manchester City Council was forced to reduce the budget for adult social care services by £8.8million in 2011/2012. The resulting reorganisation is known as the Redefined Social Care Offer (RSCO), and this study investigates its impact on people with dementia and their carers. To this end the study employed a multi-method design embedded within an action research methodology. The resulting new evidence from carers and professionals collected by means of a qualitative survey, a focus group, formal requests for information, and general engagement work suggests that as a consequence of the RSCO people with dementia experience reductions in their entitlements and individual budgets and a rise in personal contributions to their care leading to financial hardship, anxiety, stress, deterioration and needs not being met. In addition, people struggle with the loss of alternative provision through the independent or voluntary sector, and the reduction in information, advice and advocacy services. Finally, the RSCO is shown to have a negative effect on the wider social care economy and the quality of care. These findings can also be taken as an indication as to the wider impact of the RSCO on other client groups and the study taken as a model for exploring these issues further.

Document purpose “Dementia: Care in Crisis?” reports the findings of an investigation into how social care funding reductions in

Manchester have affected people with dementia. Title “Dementia: Care in Crisis?” – The Impact of the

Redefined Social Care Offer on People with Dementia in Manchester

Publication date November 2012 Target audience “Dementia: Care in Crisis?” is intended primarily for the

Directorate for Adults, Health and Wellbeing at Manchester City Council as well as NHS Manchester and Manchester Mental Health and Social Care Trust, who share a statutory duty to commission and provide dementia support services. In addition it speaks to a wide range of organisations and people who can improve quality of life for people with dementia. This includes the voluntary and community sector, acute NHS trusts, the private sector and LINk members in general.

Acknowledgements This report was produced in collaboration with a wide

range of LINk volunteers, voluntary, community and independent sector organisations and statutory providers including the Admiral Nurses, African-Caribbean Care Group, Age Concern, Alzheimer’s Society, Care Concepts, CMFT, D&S Homecare, Generation Project, Indian Senior Citizen Centre, MACC, Manchester Carers Centre, Manchester Carers Forum, Manchester City Council, Manchester Community Health, MMHSC, NEPHRA, NHS Manchester, PAT, People First Housing, Rethink, The Fed, UHSM, and Westwood Healthcare.

Manchester LINk would like to thank our fantastic respondents who were willing to take time out of their often very stressful lives to share their views and experiences with us. Finally, special thanks go to the core members of our working group, namely Colin Forsyth, Damien Green, Livia Sousa, Lyndsay Boulton, Mary Duncan, Pauline Sergeant, Ros Nesbit, and Sue Clarke, as well as Carol Jones, Jane Tooke, Odette Taylor, and Pip Cotterill for their significant contributions.

Author Valeska Matziol, Community Engagement Officer Contact Manchester LINk can be contacted on 08454504247 or

by email to manchesterlink@theBHA.org.uk Web http://www.manchesterlink.org.uk/careincrisis Publisher ©BHA 2012. All rights reserved.

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Contents Executive Summary ii Manchester LINk – Who are we? 1 Background 2 Care in Crisis 2 Dementia in 2012 4

Methodology 7 Findings: Who responded 9 Findings: Changes since the introduction of the RSCO 10 Findings: Suggestions for minimising the impact of changes 32 Findings: Dementia mapping 36 Conclusion 39 Recommendations 40 References 43

Appendices 45 Appendix 1: Carer case study response form 45 Appendix 2: Organisation case study response form 46 Appendix 3: Mapping response form 46 Appendix 4: FACS bandings and eligibility criteria for individuals 47 Appendix 5: Information requested and received from statutory service 48 providers Appendix 6: Additional Dementia Mapping 61

List of Tables Table 1: Data collection 8 Table 2: Origin of responses 9 Table 3: Case study participant information 9 Table 4: Changes in staffing structures 38

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Executive Summary Background Since the general election in 2010 the UK has seen significant reductions in public spending forcing Manchester City Council (MCC) to reduce the budget for adult social care services by £8.8million in 2011/2012. The resulting reorganisation is known as the Redefined Social Care Offer (RSCO), which includes changes to the assessment process, the type of support that is provided, and how much clients have to contribute towards the cost of their care. Due to the grave concerns this raised, Manchester Local Involvement Network (LINk) – a network of local people and organisations aimed at improving health and social care - undertook an independent investigation into the effects of the RSCO on a particular client group: people with dementia and their carers. There are now 800,000 people with dementia in the UK and approximately 670,000 family members and friends acting as primary carers. Currently the financial cost of dementia is £23 billion a year to the NHS, local authorities and families and but this is set to grow to £27 billion in the next five to six years. Even though dementia is a public and political priority and much is underway to improve the lives of those affected, many are still let down and this is unlikely to change at a time of financial pressures potentially leading to further reductions in support provision.

Methodology This report presents new evidence collected from carers and professionals by means of a qualitative survey, a focus group, formal requests for information, and general Manchester LINk engagement work. The study employed a multi-method design embedded within an action research methodology and data was analysed using the framework approach or simply collated.

Key findings Survey respondents and focus group participants reported that since the introduction of the RSCO:

• changes in the assessment process and Resource Allocation System (RAS) have led to reductions in entitlements and Individual Budgets (IBs),

• people with dementia have been affected by charging increases,

• reductions in funding to Voluntary and Community Sector (VCS) organisations have reduced service provision, especially in terms of low-level support and prevention services that are free at the point of access,

• statutory provision of services has been reduced,

• the quality of some services has suffered as a consequence of funding reductions and/or reorganisations,

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• there is a greater demand for services due to demographic changes, the quicker deterioration of people with little or no low-level support, and less alternative sources of support.

These changes have impacted upon people with dementia and their carers in the following ways:

i) financial ii) social care economy iii) health and wellbeing iv) access and availability of services v) quality of services

Where the RSCO has a financial impact on people with dementia and their families it:

• is experienced as significant and unfair,

• leads to the needs of people with dementia and their carers not being met properly,

• is compounded by other changes in welfare benefits. In addition, respondents identify the RSCO’s financial impact as having a further effect on the local social care economy as a whole by reducing available business for care providers and employment opportunities for care workers.

Where the RSCO has a psychological impact on people with dementia and their families it tends to:

• cause greater stress and anxiety which in turn can affect physical health and wellbeing,

• be exacerbated by little or confusing information being provided and the reduction of information, advice, advocacy and support services,

• lead to carers feeling isolated and hopeless,

• cause distress and aggravation of symptoms due to breaks in routine and greater social isolation.

The RSCO also limits access to and availability of services through:

• the discontinuation of particular services (domestic services, meals on wheels, etc.),

• a reduction in viable services and existing support arrangements as a consequence of an overall reduction of available business for providers and employment opportunities for workers,

• reframing existing needs in new terms (social isolation = community involvement),

• a flawed and over-stretched assessment process,

• flawed consultation with customers. In terms of the quality of services carers and support professionals find that:

• it is more difficult to maintain high quality services,

• there is greater potential for mistakes to be made,

• vital aspects of the care manager’s role (for instance chasing up benefit uptake) can be neglected.

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Asked how the impact of the RSCO could be minimised respondents suggested the following measures:

• Providing clearer information about changes and charges for services

• Ensuring the continuity of support staff independent of role and organisation

• Offering more support in terms of coping with changes, especially for carers

• Being more creative in care planning and having a more efficient system

• Working in partnership across all sectors but especially within the VCS

• Engaging and involving service users in service planning and decision-making

• Collecting meaningful data that allows us to monitor the effects of policy changes or funding reductions

Finally, data collected by means of information requests suggests that:

• there are over 4,000 people with dementia in Manchester,

• a significant number of these are not identified and do not receive support services,

• there have been no major changes in statutory service provision since the introduction of the RSCO but small changes include slight variations in staffing and an overall reduction, as well as an increase in overall caseload,

• little public funding is made available to support specialised dementia services provided by VCS organisations.

Conclusion While our findings reflect the experience of people with dementia and their carers first and foremost, they also allow us to draw conclusions about the wider impact of the RSCO on other client groups, as they are likely to face similar situations and issues. Therefore, this study can inform a wider debate about how people in Manchester and other parts of the country are affected by public funding cuts and how scarce resources should be utilised in times of increasing financial pressures. Most importantly, it can act as a model for anyone wanting to explore these issues for other client groups or in a different locality.

Recommendations On the basis of our findings we make the following strategic recommendations to local statutory service providers (including but not limited to Manchester City Council, NHS Manchester and Manchester Mental Health and Social Care Trust):

1. Make safeguarding everybody’s business by making the Adults Safeguarding Strategy for Manchester more integrated and a priority of the Manchester Health and Wellbeing Board and their Health and Wellbeing Strategy and shared use of training opportunities and existing resources

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such as the Manchester Voluntary Sector Safeguarding Toolkit and the Advocacy toolkit.

2. Base policy and funding decisions on local evidence by gathering impact data, improving case management and administrative systems to enable more accurate reporting, making local research outcomes available across public, private and voluntary sector boundaries.

3. Increase investment into information, advice and advocacy support

to cope with increased demand and ensure the public can access the information and support required to successfully navigate the system.

4. Meaningfully involve service users in decision-making by using

established methods for collaborative decision-making such as Participatory Budgeting, working in partnership to coordinate engagement activities in the interest of clients, and establishing HealthWatch Manchester with sufficient resources to be a strong, independent service user advocate.

5. Gear commissioning more significantly towards upstream rather than downstream investment by focusing more resources on prevention and early intervention and developing a long-term strategic vision for integrated health and social care commissioning in Manchester.

Please see the full recommendations section for details.

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Manchester LINk – Who are we? Local Involvement Networks (LINks) aim to give citizens a stronger voice in how their health and social care services are delivered. Run by local individuals and groups and independently supported, LINks have the role of finding out what people want, monitoring local services and using their powers to hold those services to account. LINks were established in most areas by the end of 2008. Each local authority that provides social services has been given funding and is under a legal duty to make contractual arrangements that enable LINk activities to take place. A LINk’s role is to:

• ask local people what they think about local healthcare services and provide a chance to suggest ideas to help improve services

• investigate specific issues of concern to the community

• use its powers to hold services to account and get results

• ask for information and get an answer in a specified amount of time

• be able to carry out spot-checks to see if services are working well (carried out under safeguards)

• make reports and recommendations and receive a response

• refer issues to the local ‘Overview and Scrutiny Committee’

Manchester LINk was established in April 2008. It is the umbrella organisation which brings together other networks, organisations, communities and individuals in Manchester to give them a voice in improving health and social care services. We do this by working in a collaborative and inclusive way across Manchester taking account of the rich diversity of the people of Manchester and their needs.

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Background Care in Crisis Since the general election in 2010 the UK has seen significant reductions in public spending, with major cuts in welfare benefits and in public services. The October 2010 Comprehensive Spending Review, followed in December by the Local Authority Financial Settlement, offered English local authorities what they described as ‘the worst financial settlement in living memory’ (Local Government Association press release, 13 December 2010). While the impacts of these cuts have been felt across all communities and social classes, a key concern was and still is that more deprived households and neighbourhoods could be suffering the most, especially as local authorities with high levels of multiple deprivation (expressed as an IMD score) have experienced more severe cuts in their local government grants than those with lower levels (The Guardian, 13 December 2010). Indeed, an analysis of the distribution of cuts carried out by the Joseph Rowntree Foundation found that the overall impact of the distribution of cuts between different types of area and authority “appears to be very adverse indeed for more urban and deprived authorities and relatively modest for relatively affluent suburban areas” (Hastings et al., 2012, p.15)1. Alongside other local authorities in the North West (notably Liverpool) Manchester in particular was hit hard. Despite Manchester ranking fourth highest on the Index of Multiple Deprivation (IMD) it lost 10.9 per cent of its cash spending power whereas the best-off authority of Richmond Upon Thames lost only 0.6 per cent. Due to these extensive financial pressures Manchester City Council (MCC) had to reduce the budget for adult social care services by £8.8million in 2011/2012. Following consultation with social care clients this led to a reorganisation in the form of the Redefined Social Care Offer (RSCO) that includes changes to provision such as:

• the majority of customers primarily receiving short-term ‘reablement’ support instead of receiving more intense treatment

• no longer providing any equipment that costs less than £25

• stopping the provision of hot meals on wheels and domestic services such as cleaning, shopping, pension collection and laundry

• increasing charges for care

• an increased use of assistive technology The increase of charges for care is dependent on the level of clients’ savings and weekly incomes. As part of the RSCO a client with over £14,250 worth of savings has to contribute to the cost of their care at a rate of £1 for every £250 over this amount. In addition, now only 75 per cent instead of the previous 55 per cent of clients’ weekly income is taken into account for the calculation of charges, and the maximum weekly charge rate (previously set at £250) has been removed.

1 Full report available at http://www.jrf.org.uk/sites/files/jrf/communities-recession-services-full.pdf

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This means that depending on how much savings clients have they may be asked to pay for their services in full. In response to the grave concerns raised by this reorganisation Manchester LINk held the “Care in Crisis event on 18th October 2011. This attracted a lot of interest and reemphasised the need for Manchester LINk to proactively champion the rights of service users at this time of upheaval and service change. Therefore we took some of the initial ideas for future pieces of work generated at the event and developed them further in dedicated workshops and discussions with the LINk Steering Group. As part of this work we developed a Fact Sheet for social care customers explaining changes to services and current entitlements, investigated reassessments of older people and entitlement to day services, and brought together a working group tasked with measuring the impact of the Redefined Social Care Offer (RSCO) on service users. Due to limited resources and practical considerations the working group decided it would be more useful to focus on one distinct client group rather than trying to get to grips with the impact of the RSCO overall, as this allowed us to approach this complex issue as holistically as possible. We chose people with dementia and their carers in particular for the following reasons:

• They are likely to o be hit hard by the RSCO as they are more likely to depend on long-

term increasing support (rather than short-term ‘reablement’), hot meals on wheels and domestic services.

o use both health and social care services and hence lend themselves to an integrated approach to scrutinising service provision.

o be especially vulnerable and less able to advocate for themselves. o be reluctant to talk to statutory services about their experiences,

because of the shame associated with the condition, but might be more open with VCS support organisations and LINk volunteers.

• Many of the key working group members have expertise around dementia care and good relationships with support services and service users.

• A lot of resources are spent on dementia care and dementia has been identified as a national priority.

• There is substantial interest from our members and the public at large in work on dementia and cuts to public spending (as seen at Manchester LINk events and demonstrated by YouGov polling undertaken for the Dementia Action Alliance2).

This report represents an overview of this work and our findings.

2 Available from Dementia Action Alliance website at http://bit.ly/PJSNyo

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Dementia in 2012 The term ‘dementia’ describes a set of symptoms which include loss of memory, mood changes, and problems with communication and reasoning. These symptoms occur and gradually get worse when the brain is damaged by certain diseases, including Alzheimer’s disease and damage caused by a series of small strokes. According to the Alzheimer’s Society’s report “Dementia 2012: a national challenge” (2012)3 there are now 800,000 people with dementia in the UK and approximately 670,000 family members and friends acting as primary carers. Currently the financial cost of dementia is £23 billion a year to the NHS, local authorities and families and but this is set to grow to £27 billion in the next five to six years. Since roughly two-thirds of people with dementia live in the community (Alzheimer’s Society, 2007) the estimated 670,000 people acting as primary carers for them saves the state £8 billion per year (Alzheimer’s Society, 2007, updated to reflect 2012 figures). One-third of all people with dementia in the UK live alone in their own homes, however, as the symptoms of dementia progress, people need increasing amounts of care, and once the symptoms of dementia become severe it is often appropriate for an individual to move to a care home. As a consequence, one-third of people with dementia live in a care home and at least two-thirds of care home residents in the UK have dementia (Alzheimer’s Society, 2007). People with the condition are also core users of NHS care – a quarter of hospital beds are occupied by people with dementia over 65 at any one time. Despite the number of people living with dementia, and the associated costs, numerous reports from the National Audit Office (NAO) (2007; 2010), Public Accounts Committee, regulators, NHS Atlas of variation (NHS Right Care, 2011) and Alzheimer’s Society show that many people with dementia are being let down. It seems the significant spend on dementia is not employed effectively leaving too many people with substandard care and support that does not meet their needs and aspirations. Furthermore, the quality of care varies considerably across geographical areas. However, dementia is now a public and political priority in a way that it has never been before, especially since the publication of the National Dementia Strategy three years ago (Department of Health, February 2009). Although initial implementation had been slow, the NAO found a year later that there was continued commitment to dementia as a high priority, with levers in place to drive change (NAO, 2010). That this is still the case can be seen from the revised NHS Operating framework for 2012/13 in England that identifies dementia as a high-level priority for action. There is a new Commissioning for Quality and Innovation (CQUIN) target on improving diagnosis of dementia in hospitals (Department of Health, 2011) and the Department of Health is planning to include a dementia-related indicator in the NHS outcomes framework. The latter sets out the

3 Full report available at http://alzheimers.org.uk/site/scripts/download_info.php?fileID=1389

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outcomes and corresponding indicators that will be used to hold the NHS Commissioning Board to account for the outcomes and services it commissions from 2012/13. In addition, in March this year David Cameron launched the Prime Minister’s Challenge on Dementia committing to transform the UK into a leading light of dementia care and research, by driving up diagnosis rates, increasing investment in research and raising the quality of dementia care. Finally, on 21 September 2012, World Alzheimer’s Day, the Department of Health started a national awareness raising campaign called ‘A Day to Remember’ aimed at inspiring people to talk to their friends and family members when they spot the signs and symptoms of dementia and encouraging them to visit their GP (Department of Health, 2012). While this represents a significant opportunity we must not forget that services for people with dementia remain inadequate and are provided in an increasingly pressurised financial environment. The Alzheimer’s Society (2012) concluded that a majority of people are still not living well with the condition and that for many people with dementia and their carers, quality of life remains extremely varied. People face potential battles for a diagnosis and support from the health and social care system while even those everyday things we all take for granted – having control over daily life, spending time with friends and family, socialising and enjoying hobbies – are made difficult by a lack of understanding of dementia in our communities (Alzheimer’s Society, 2012). When YouGov carried out online interviews of over 280,000 members of its GB panel on behalf of the Dementia Action Alliance (DAA) it found that a vast majority of respondents (82 per cent) agreed or strongly agreed that people with dementia and carers of those with dementia need more help and support. 73 per cent of respondents also thought that funding for dementia services was likely to be threatened by the current financial climate despite the public overall prioritising social care for older people over public spending on other services such as bin collections, roads, transport and libraries (DAA, 2012). To date no research has investigated how people with dementia will be affected by reductions in funding. However, projections of the impact of budget cuts on social care services for older people in general undertaken by the London School of Economics (Fernandez and Forder, 2012) suggest that we will see a significant impact on the number of individuals supported, particularly in the community. Furthermore, although the reduction in public spending will lead to increases in private spending the unmet need overall is set to increase rapidly. The effect this can have has been discussed by Mencap (2012) following a study on the impact of day service cuts on people with a learning disability. The cuts to day services resulted from a tightening of eligibility criteria by many local authorities and a switch from traditional commissioned services to a personal budget that, in reality, covers a lower level of day support than was previously offered. Findings highlight that many people with a learning disability feel ‘isolated’ (27%), ‘lonely’ (28%) and ‘scared about the future (37%) as a result of spending less time outside their home everyday. The impact on families has also been significant. Nearly 1 in 4 (23%) family carers stated that their family is financially worse off due to the changes to day service provision with 14 per cent having already been forced to give up paid employment, and almost 1 in 5 (19%)

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fearing that they will be forced to give up work to look after their child or family member in the future (Mencap, 2012). An associated survey of social care professionals revealed that their biggest worry is the financial and emotional stress the cuts places on carers (70%). Elsewhere the negative impact stress has on carers and their ability to care has been well documented (Zarit et al., 1985; Chenoweth, 1986; Haley et al., 1987). More recently, in 2010 a study carried out on behalf of the Carers Week Consortium found that almost three-quarters (74%) of people providing unpaid care for a loved one have reached breaking point due to the pressures of their caring role. The Carers Week research found that financial worries were a major cause of carers reaching breaking point. Another major factor, cited by four in ten respondents, was ‘frustration with bureaucracy’ (Carers UK, 2012). Worryingly, 62 per cent of professional respondents to the Mencap study feared that cuts may lead to a higher risk of neglect and abuse of people with a learning disability (Mencap, 2012). Moreover, as a Guardian survey shows, 86 per cent of their social care network members believe cuts are the biggest challenge facing the sector (The Guardian, 28 February 2012). Professionals were mostly concerned about fewer staff being expected to take on more work, spend less time with clients and work longer hours. This is not surprising considering that a key way to reduce public spending is to reduce the public sector workforce. Indeed, 2011’s Social Work Survey carried out by Liquid Personnel (2011) found that 56.9 per cent, 40 per cent and 55.3 per cent of respondents respectively had seen cuts to ‘managerial’, ‘frontline social work’, and ‘administrative/support posts’ in their teams. An average of around 80 per cent of those participants who have experienced a reduction of staff in their teams said this had a negative effect on their ability to do their jobs effectively. Further, 39.1 per cent of social workers felt their current caseload was ‘unmanageable’ or ‘totally unmanageable’, 68.6 per cent said their personal caseload had increased in the last year, and 81.4 per cent admitted to working over and above their usual hours of work ‘quite often’ and ‘very often’. While we need to take care in generalising these findings to the situation of people with dementia and their families, we would expect to see the following changes as a result of the RSCO in Manchester:

1. fewer people with dementia and their carers being eligible for support services and having their needs met (both directly and as a consequence of individual budgets not covering the same level of provision as before),

2. higher charges for those who meet eligibility criteria, 3. fewer people with dementia receiving support to remain independent in the

community and hence having to move into residential care, 4. more people with dementia feeling lonely, isolated and worried as a result

of service cuts, 5. family carers experiencing higher levels of financial and emotional stress

potentially even leading to higher levels of neglect and abuse of people with dementia,

6. social care professionals being overstretched and less able to do their jobs effectively,

7. the quality of care to decrease as a consequence of reduced funding and workforces.

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Methodology This study employed a multi-method design embedded within an action research methodology. As Kagan, Burton and Siddiquee (2007, p. 32) have highlighted “Action research (AR) is an orientation to inquiry rather than a particular method. In its simplest form it attempts to combine understanding, or development of theory, with action and change through a participative process, whilst remaining grounded in experience.” As such AR has been described in a variety of ways by different authors and distinctions have been made between different types of AR. Practical action research in particular aims to address “a concrete problem in an immediate situation… [without trying] to identify one particular factor and study it in isolation, divorced from the context giving it meaning.” (Cohen and Manion, 1994, p.192). This is exactly what LINk work is about: investigating service user experiences holistically with a view to improving services. At the centre of the study therefore lies a descriptive case study inquiry, which as Yin (1994, p.13) points out “copes well with the technically distinctive situation in which there will be many more variables of interest than data points, and as one result.” For the purposes of this study a case was defined as the total of experiences a participant has related to dementia and the RSCO, which involved experiences with a range of different services, and direct experiences as well as indirect ones. Participants were self-selecting and divided into two main groups:

1. People with dementia and their relatives and carers 2. Support organisations and professionals working in the field

Data was mainly collected between April and July 2012 by means of a case study response form (see Appendices 1 and 2) which participants either completed themselves or had filled in by researchers and support workers on their behalf following a brief semi-structured interview. The form was available as a hard copy, an electronic document or an online survey and widely promoted through the Voluntary and Community Sector (VCS) by means of newsletters, e-bulletins and targeted mailouts. By providing a structured form for responses we ensured that the following research questions were addressed:

1. What (if anything) has changed since the RSCO has been introduced? 2. What has been the impact of those changes (if there were any)? 3. How could the impact be minimised?

We have collected further data in the form of individual comments and by means of a two hour focus group discussion. Table 1 provides an overview of the data collected. Some responses were not valid and therefore not included in the analysis. The reasons included responses from individuals who receive Continuing Healthcare Funding, void responses, and those about services provided outside of the Manchester Local Authority Area.

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Table 1: Data collection

No of Responses

Valid Not valid Total

Personal case studies 13 4 17 Organisational case studies 5 0 5 Comments 45 0 45 Focus Group transcript 1 0 1

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In addition, we have gathered contextual information through a mapping exercise of available dementia services in Manchester. For this we used two strategies:

1. We asked organisations providing services to people with dementia and/or their relatives and carers to send us information about the services they provide again using a response form or an online survey (see Appendix 3).

2. We made formal requests for information about statutory service provision to Manchester Mental Health and Social Care Trust and Manchester City Council (see Appendix 5 for information requested and received).

Analysis The qualitative data collected was analysed using the framework approach (Ritchie and Spencer, 1994), which involves combining themes from the theoretical framework with themes from the data to develop a coding framework. Despite starting deductively from pre-set aims and objectives, the framework approach still reflects the participants’ original accounts and observations through a process involving the five stages of familiarisation with the data, identification of a thematic framework, indexing, charting, and mapping and interpretation (Pope, Ziebland and Mays, 2000). Two researchers carried out an analysis independently before sharing and discussing their findings. This ensured different perspectives and a degree of inter-rater reliability, especially as both researchers identified almost identical themes. The mapping information collected was collated to produce an overview and where available we compared data from before the RSCO was introduced (1st October 2011) to data from afterwards (1st May 2012).

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Findings: Who responded Tables 2 and 3 provide an overview of what we do know about the participants. Table 2: Origin of responses

Case Studies Comments Focus Group Service users 0 0 0 Carers 13 31 0 Professionals 5 30 6

Total 18 61 6 Table 3: Case study participant information

Sex Age

male female 40 - 54 55 - 69 70 - 84 over 85 unknown

People with dementia 8 5 0 2 6 4 1

Carers 4 9 6 4 0 0 3

Ethnicity Locality

White British White Other North South Central unknown

People with dementia 12 1 4 7 1 1

Carers 13 0 3 6 1 3

Tables 2 and 3 highlight that the findings largely represent the views of carers and professionals rather than the views of people with dementia themselves. Nevertheless, we suggest that carers are well placed to provide practical information about the support that people with dementia receive from statutory or voluntary sector providers. This covers, for instance, information about entitlements to support from Manchester City Council, the level of charges for services, waiting times, etc. Furthermore by commenting on the impact of the RSCO on them, carers allow us to draw conclusions about the indirect effect of this on people they care for. Equally, while relevant professionals can be expected to speak knowledgeably about people with dementia and their carers, drawing on experience and expertise derived from long-term contact with service users, their views, too, might conflict at times with the views of people with dementia. In addition, as respondents exclusively identified as White British it is possible that our findings obscure the experiences and views of other ethnic groups. Considering the great ethnical diversity of Manchester and the relatively large Black and Minority Ethnic (BME) communities this might be significant. However, while we acknowledge that people from BME communities might face additional changes and challenges in comparison to the majority population in terms of the RSCO, we posit that the changes and related impact described here represent a general baseline and as such are also applicable to BME communities4.

4 For a general discussion of BME people with dementia and their access to support and services see SCIE Briefing 35 at http://www.scie.org.uk/publications/briefings/files/briefing35.pdf

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Findings: Changes since the introduction of the RSCO People with dementia, carers and professionals have experienced a range of changes since the introduction of the RSCO depending on their individual circumstances. Some are a direct result of the reorganisation of social care support provided by Manchester City Council. Others are an indirect result of the RSCO or simply a consequence of the wider financial and policy context. The research carried out for this study have highlighted the following changes resulting from the introduction of the RSCO: 1. Assessments are carried out differently leading to reductions in

entitlements to social care support. In addition, the Resource Allocation System (RAS) has been reviewed leading to reductions in Individual Budgets (IBs).

17 responses commented on this change. Comments included:

“Since the RSCO came in we have had another assessment and the IB has been reduced even further.” (S12)

“We come across a lot of people with dementia who lose out on services after they have been reassessed even though their needs have not changed and aren’t being met properly by the alternative arrangements.” (Professional comment)

“One day a week [Dean] goes to a day centre. […] We used to get two and a half days at the day centre.” (Max, S14)

“My mum has had her shower visit dropped which really isn’t at all appropriate for a person who is incontinent and has dementia.” (Carer comment)

“A few years ago you could refer people to day centres who did not require any personal care. However, now it seems like unless you have personal care needs you automatically won’t fall into the substantial need category and will never be entitled to day services.” (Professional comment)

2. The level of cost at which Manchester City Council expects customers to contribute to their care has increased.

10 responses commented on this change. Comments included :

“We have just received a massive bill for my father’s respite care. He has to contribute all his attendance allowance plus around £40 for each week he is in respite.” (S03)

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3. Funding to VCS support organisations has been reduced leading to reductions in service provision, especially in terms of low-level support and prevention services that are free at the point of access.

Comments included:

“The other big difference is that we lost the support worker from the Alzheimer’s Society.” (S13) “The cuts to funding have affected the services that the Alzheimer’s Society can provide.” (Professional comment)

I’m very concerned that this support group for carers might not continue just because we’ve got such a wealth of information and knowledge that would be a shame to lose. We could help so many people if we were only given the opportunity.” (Carer comment)

4. Statutory provision of services has been reduced. This includes, for

instance, services provided by Manchester Mental Health and Social Care Trust. Comments included:

: “We don’t receive the support from social workers like we did.” (S04) “We had an admiral nurse but she stopped coming for the last 12 months as well as the community psychiatric nurse who also stopped coming.” (S07)

“I’m especially concerned about domestic services not being funded anymore.” (Carey, S12)

“I feel very sad that a [Young Onset Dementia] service that was treasured and meant a lot has all but disappeared.” (Noreen, S01)

“[Young Onset Dementia Service] used to arrange trips for people for a weekend or so but now they’re saying that they can’t.” (Francine, S02)

“It might be fine to say stop providing hot meals on wheels. But what happens to a person with dementia who could quite easily forget how to use a microwave or forget that they have to put food in, which could result in someone not eating or eating uncooked food.” (Carer comment)

5. The quality of some services has suffered as a consequence of funding

reductions and/or reorganisations. Comments included:

“The carers […] rush more than before and are in and out in a flash because they’re given more work to do and are under more pressure.” (S05)

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“… especially in recent months the service [NB: Young Onset Dementia Service] has been absolutely rubbish.” (Noreen, S01)

6. There is a greater demand for services due to demographic changes, the

quicker deterioration of people with little or no low-level support, and less alternative sources of support (e.g. reduction in welfare benefits leaving less funds to pay for care privately). Comments included:

“Getting rid of a lot of wardens in sheltered housing schemes has been really bad for people with dementia because wardens used to look after them. Often it’s just little things that enable people to stay on their own but now these little things won’t be done anymore.” (Carer comment) “Carers are already afraid of the changes to the rules around Disability Living Allowance (DLA) entitlements because if the person they care for isn’t eligible for the higher band they can no longer apply for carers allowance.” (Professional comment)

It is important to note that not all respondents experienced all of these changes. Indeed, 7 participants have told us that nothing at all has changed for them since the introduction of the RSCO. Although 5 of those did not qualify for support from Manchester City Council in the first place, because they either did not meet the Fair Access to Care Services (FACS) criteria that determine a person’s level of need (see Appendix 4 for FACS bandings and eligibility criteria for individuals), or had personal financial means above the eligibility threshold. This is illustrated by the following examples:

“Because we don’t receive any help from the council nothing has changed for us since the RSCO has been introduced.” (Tim, S11)

“I don’t think that anything much has changed recently. It’s always been bad, and it’s still bad. In terms of social services I’ve never had any support from them and neither has my partner [NB: who suffers from early onset dementia].” (Francine, S02) “As Emma had her own savings she has been paying for her care herself until now.” (Tina & Tom, S10)

“We pay for daycare ourselves because my partner isn’t bad enough yet to get services from the council so we haven’t been affected by the cuts yet in terms of our finances.” (Carer comment)

For another respondent the RSCO has been irrelevant because their partner is looked after in a care home funded through NHS Continuing Healthcare5, which has not been affected.

5 Continuing Healthcare is a package of NHS continuing care provided outside hospital, arranged and funded solely by the NHS, for people with ongoing healthcare needs.

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Finally, one respondent reports not having had a reassessment yet since the introduction of the RSCO and hence nothing having changed so far.

“For us nothing much has changed since the RSCO came in. Marie has been assessed in October 2011 and we haven’t been contacted about a reassessment so I assume we won’t get one until October of this year.” (Diane, S05)

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Findings: The impact of changes since the RSCO The changes outlined in the previous section have impacted upon people with dementia and their carers in the following ways:

i) financial ii) social care economy iii health and wellbeing iv) access and availability of services v) quality of services

This section details the findings according to each of these categories.

2. Financial impact on carers and people with dementia The RSCO is clearly having a detrimental financial impact on people with dementia and their carers. When experiencing a reduction in their IBs or an increase in charges the additional financial burden is hard to cope with. This is illustrated by the following comment:

“The charges for care have increased and this worries me a lot. I’m not exactly sure what the new charges will be but the last bill we received was a lot higher. I’m not sure how we’ll be able to manage financially.” (Deirdre, S13)

However, the issue is not necessarily reduced IBs or higher charges per se but the consequence of not being able to meet the needs of the person with dementia and their carers anymore. For instance, Tina and Tom told us about their worries for the future:

As Tina’s mum Emma had her own savings she has been paying for her care herself until now. Tina and Tom thought that the money would probably last about four years but now it’s gone after two years and they don’t know what’s going to happen. They think they’ll have to “sell the house” and are worried about Emma’s reaction and how she will cope with changes such as this. The charges in general have gone up, which puts more of a financial strain on the family. Tina and Tom both work full-time and have small children so they can’t look after Emma 24/7 and are dependent on outside care and support. “What is the next step going to be? It’s very worrying and frightening.” At the moment sensors are being put in for an investigation and then they’ll see what needs to happen next but Tina and Tom are frightened that the council will not provide enough money to pay for the level of care Emma currently gets. They are very happy with the current day services and want her to stay there because she likes it, knows everybody there, and needs the routine. That gives Tina peace of mind. It would be horrible if she couldn’t go to the centre anymore and had to go somewhere else or stay at home. Tina and Tom are also worried that Emma will soon need further care as she is deteriorating. “It’s truly frightening and stressful. Sometimes I lie awake at night and worry. Actually, quite often.” (S10)

Nick, too, is concerned that the level of care provided by Manchester City Council is inadequate. Like other carers in his position he feels the need to pay for extra care.

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“Mum has 3 support workers to assist with personal care and gets one day of daycare. I pay for an extra day in daycare privately to help my dad out who is very tired. I feel like I’ve lost two parents if I don’t pay for the extra and give my dad a break. He can no longer leave her; no longer enjoy the things we used to do. I feel like we’re waiting for my dad to become ill before we can get further care.” (Nick, S06)

These individual examples are echoed by professionals who report seeing an increased number of people unable to afford adequate levels of social care and suffering greatly as a result.

“In terms of how people with dementia are affected directly by the RSCO, we come across a fair amount of people who have had their entitlements or individual budgets reduced after being re-assessed, which can have a very detrimental effect. It can add significantly to the stress and pressure on the person themselves as well as their carers/ the whole family. The services they are able to buy from the reduced budget might not be sufficient anymore to meet their needs and so on.” (Carers organisation, P05)

Importantly, local reductions in IB funding interact with and are augmented by national changes in welfare benefits.

“In terms of the effect of the RSCO on service users and carers we see people’s packages of care being reduced. Together with national cuts to benefits that also affect carers the income to families as a whole can be dramatically reduced. People with mental health issues are the most affected. For instance the new forms for the Department of Work and Pensions are heavily weighted towards physical disabilities. People with mental health issues or learning disabilities will be less likely to qualify for support. Worryingly in a few cases where decisions have been appealed or taken to court the original DWP decision was backed up, which suggests that there is not much point in challenging the system either. Generally speaking for people with dementia access to services and support is very limited until you become eligible for Continuing Healthcare funding. The emphasis is still on funding only the most critical cases even though what is most needed is low level and preventative services. For carers this means that they are asked to do more as the council and the government do less. The government cuts your entitlements and the council cuts the care package of the person you’re supporting so you have to pitch in more and will get a lot less money and support in return.” (Carers organisation, P04)

This can further affect a carer’s ability to continue with paid work:

“People have to increasingly give up employment to care for people at home and are then discriminated against and destined to live in poverty. The financial impact of giving up employment in order to care cannot be overestimated.” (Carers organisation, P04)

Some respondents questioned the fairness of the current funding system for social care, especially in light of the RSCO.

“A percentage of our clients have had their entitlements for day care reduced, for instance, from 2 days to 1 day. Fortunately, most of these clients have chosen to

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pay for the day care they have lost themselves but whether or not it is fair to ask them to do this is a different question. Of course less day centre provision leads to more social isolation, which has knock-on effects on people’s overall health and wellbeing as well as their reliance on services.” (BME organisation, P03) “What I don’t understand is this: If I wasn’t looking after my dad he would have to be in a home. This would cost a lot more and the council would have to pay for it because my dad doesn’t have savings. Therefore we’re saving them lots of money by keeping him with us here at home. Why do we then have to pay on top of that? It doesn’t seem fair at all.” (Marjorie, S04) “The statements we receive from the Manchester City Council are very misleading, stating each month the amount to pay is £0.00. This is not the case. My father who has worked all his life has paid into the system for 65 years is now getting nothing back. The government should be ashamed of what they are doing.” (Eamon, S03) “All social care should be free and paid for through our taxes.” (Denise, S07)

The sense of unfairness is especially acute when respondents see resources used in a way that does not make sense to them. This is illustrated by Noreen’s comments about the Young Onset Dementia Service:

“At the beginning of January we got a letter saying that the workers would no longer collect the clients by car themselves. Instead they are now being picked up by cab. Sam can’t travel in a cab by himself. He needs somebody with him. This means a support worker would have to get a cab from the MRI all the way to South Manchester and back and then do the same again when they bring him back. Of course the service won’t arrange that so I ended up having to put him in a cab by himself which I know isn’t right and can’t make sense of. Why can’t they pay the staff more mileage and let them use their own cars? Surely that must cost less more money and be quicker and more efficient. At the moment it’ll easily cost £20 per go. What happens when they use the budget unwisely like that is that there is less money for other things and I think the people paying the price for that are the clients. My husband is supposed to go to the centre from 9.15 to 4pm but sometimes they’ll only get back to the centre for 11am and then leave already at 2pm to have him back home at 3pm. Also, like I said there are no more trips or days out, hardly any activities.” (Noreen, S01)

Again, Noreen’s objections to resources being used unwisely by statutory providers and commissioners is echoed by other individuals and professionals, who emphasise the need for low-level service provision and the potential for costs rising dramatically in the long-term as a consequence of funding reductions in the short-term.

“Often it’s just little things that enable people to stay on their own [e.g. wardens in sheltered housing schemes] but now these things won’t be done anymore. It’s crazy because in the end it’s going to cost us much more to make these savings than to keep things the way they have worked fine for years and years.” (Carer comment) “As people are asked to pay for social care support services, they don’t want the services anymore. However, this then leads to crisis situations.” (Professional comment)

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“People are receiving less support services [… and] become more and more isolated at home which affects their mental health and general wellbeing. That’s what we come across more and more. […] If you reduce the amount of time that you have to see that person, that creates more isolation. That structure that they had before starts to topple and that creates stress and then you’re back into that vicious circle. Before you know it the person is back in hospital and the costs start to rocket.” (Focus group participant)

Participant 1: It’s like that with little things like meals on wheels. It’s true that you

can provide the nutrition in a different way, or meet the need differently, for example through frozen meals, but you then also lose the social benefit of having someone come to see you. Of course it’s a quick visit but it still allows you to have a quick chat, see another face, that sort of thing.

Participant 2: For people with dementia farm foods don’t work very well because even though they might be physically able to put it into the microwave they forget how to do it or don’t have an appetite and don’t eat. Don’t get me started!

Participant 1: That’s what I don’t understand: Someone who wasn’t able to prepare their own meal before and used to get meals on wheels will now need a call from a care worker to prepare the frozen meal. Would that not be more expensive?

Participant 3: Yes, but generally that isn’t happening. So older people sit at home and just don’t eat and experience malnutrition with all the associated problems. Or they have a supply of sweets and the sugar levels go sky high, and they might get diabetes just because they eat the wrong foods.

(Focus group participants)

In summary, where the RSCO has a financial impact on people with dementia and their families it:

• is experienced as significant and unfair,

• leads to the needs of people with dementia and their carers not being met properly,

• is compounded by other changes in welfare benefits.

3. Impact on social care economy In addition, respondents identify the RSCO’s financial impact as having a further effect on the local social care economy as a whole by reducing available business for care providers and employment opportunities for care workers.

“We currently charge individual clients at the same rate as the council but the charges don’t actually cover our costs. Because of the block contract with the council and the relative security it gives us we can continue in this way for the time being but if we had to raise all our money from charges we would not be sustainable in the way we’re running right now. We’d have to increase charges substantially. This again would act as a barrier to people accessing the service and might in the end lead to closure.” (BME organisation, P03)

“I know a number of people who have cash IBs and employ personal assistants (PAs), who have had their budgets reduced since last year. This has a knock-on

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effect on PAs who last year might have earned £8 per hour and are now down to £7 or £6.50 per hour and/or had their hours reduced. For a number of PAs this means that they aren’t able to continue in this employment anymore, which means that the person receiving care has to find new PAs and has their continuity of care interrupted. This is especially disruptive for people with dementia.” (Professional comment)

This reduces the number of available services and providers thereby reducing customers’ choice and control, or as carers organisation told us: “In any case individual budgets aren’t a magic remedy, especially not if the service you need isn’t out there for you to buy. In that case having the money doesn’t make a difference.” (P05) Related to this are concerns about financial pressures leading to a much greater reliance on volunteer-led community services, which in turn might lead to a reduction of such services due to volunteer burnout or the service becoming unsustainable. This was discussed by focus group participants, who were also quick to point out the very real costs of volunteering emphasising that volunteers and carers were not an infinite resource to draw on. Participant 1: There’s an interplay between there being less services available

for people and the charges for services going up so that less people are able to afford them. It puts more strain on low-level community-based organisations like Good Neighbour groups, luncheon clubs all these organisations that are largely run by volunteers. And then these places become more pressured and find it difficult to meet the need. Volunteers might become stressed and drop out because that’s not what they’ve signed up to do. And all of this kind of goes against the whole Big Society idea, doesn’t it?

Participant 2: Also, there is a real cost to volunteering. It costs more than the hourly minimum wage to recruit, train, supervise and support a volunteer.

Participant 4: We would like to have a real fleet of volunteers able to provide support to patients with dementia who would be able to spend that extra time next to the bedside that unfortunately nurses don’t have anymore. But it would cost far too much a year.

Participant 3: That’s exactly it. Someone’s got to train them, someone’s got to manage them. There’s a cost with that. And you need other resources and have to have an infrastructure in place so you can reproduce and reproduce that. This never seems to be taken into the equation. It’s a big issue, like with the ripple effect we’ve been talking about. A befriender for argument’s sake who causes a problem can have a massive resource implication on the organisation.

Participant 2: Also, we’re asking volunteers to do jobs that paid staff would normally do and that’s not exactly fair either, is it?

Participant 3: Which takes it back to the point that the government has got away with it for years by having families and carers take on so much. The big problem now is that the emphasis seems to be on “if we can shift it on to someone we don’t have to pay for, let’s do it” but it’s not an infinite resource.

(Focus group participants)

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One such service we spoke to suggests that these concerns need to be taken seriously, especially taking into account safeguarding considerations as the following excerpt illustrates:

“We have noticed […] a bit more of a demand now [… and] I know that some social workers have started referring people to us as an alternative to other services such as day centres. For example, one lady now comes with her husband who has dementia. Before he used to go to a day centre one afternoon a week but now they can’t afford it anymore. So instead she brings him to us. But it isn’t the same because she needs to be there, too, and look after him because we haven’t got enough people for it, so she doesn’t get a break. If you ask me she could really do with one because she isn’t the youngest herself and looks very worn out. For us the worry is that if more and more people want to come to our lunches eventually we’d have to start turning them away [… which is] hard on us as volunteers and committee members, too […] It’s heartbreaking when someone asks you for help and you have to turn them away. I would find that very difficult. I also think there is something really not right with the system if we can’t look after our old people properly. […] The gentleman who comes with his wife now should be in a day centre or have a support worker to take him out of the house and do activities with him. His wife can just about look after him in terms of food, and personal care and making sure he doesn’t run off and get lost and so on. She can’t come up with entertaining things for him to do all day. She can’t do activities that would help with his dementia, like reminiscing and all that. She needs help. Why doesn’t she get any? And why is the council now sending people to us? On one hand they don’t give us money to do what we do but on the other hand they obviously think it’s a useful thing for people. Don’t get me wrong. I enjoy what I do here, it’s very rewarding and I would never stop but I feel like we’re being taken for granted and maybe even taken advantage of because we’re willing to do something for free or for very little money that would otherwise cost a lot.” (Luncheon club, P01)

In summary, the RSCO has effected the local social care economy potentially reducing the availability of services and customer choice. 4. Impact on the health and wellbeing of carers and people with dementia The financial impact on people with dementia and their families has also had a psychological impact. Carers report experiencing greater stress and anxiety, which can cause serious mental health problems, exacerbate physical ill health and lead to carer breakdown. Comments included:

“I’m very concerned about the care of my mum. She’s late stage Alzheimer’s and vascular dementia and currently receives 27 hours of care. The social worker told us that this is likely to go down after the reassessment that is coming up. But my mum is just as bad as before, even worse. My brother who looks after her to give the regular carer a break is also suffering and now has to take anti-anxiety medication due to stress. Can you tell me what to do if they drop the care hours? We wouldn’t be able to cope.” (Carer comment)

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“We have just received a massive bill for my father’s respite care. […] This came as a massive shock to my mother, who is also a very sick lady with severe heart trouble. It’s making her ill, she’s saying “Just leave it, just leave it”. (Eamon, S03)

“I am a full time carer and I have some health problems myself. Caring is hard work and a lot of stress and responsibility. It’s very exhausting and I am tired. 6 weeks of respite care a year are not enough, and I doubt I would be eligible for anything else as a carer. Not in this day and age. Our social worker is a nice man but hard work. He’ll just say ‘it’s cut backs, it’s cut backs’” (Marjorie, S04)

“I pay for an extra day in day care privately to help my dad out who is very tired. I feel like I’ve lost two parents if I don’t pay for the extra and give my dad a break.” (Nick, S06)

“My dad needs 24 hour support and can’t be left alone, which puts a constant strain and a lot of stress on my mum, who after all isn’t the youngest herself anymore.” (Tim, S11) “The current situation is impossible and I can’t cope for much longer. When I break down my dad will have to go into a home anyway and my life will be ruined as well. It’s not fair and I am quite angry about it all.” (Max, S14)

“People have had their entitlements or individual budgets reduced after being re-assessed, which can […] add significantly to the stress and pressure on the person themselves as well as their carers/ the whole family. “ (Carer organisation, P05)

The stress can be compounded by receiving little or very confusing information regarding the changes, especially in terms of billing and the increase of charges.

“A lady I work with recently got a very high bill from the council […] Luckily it turned out that the bill was wrong. However, there was no regard for the stress this bill caused the carer who was shocked by the amount.” (Professional comment)

“The cost of care has gone up. It is difficult to understand why as no one seems to know what they are talking about. This causes unnecessary worry for carers. I receive too many letters about costings and one time I even received someone else’s bill.” (Niamh, S09)

“The letter we received about it was very hard to make out and we didn’t really understand what they were going to do. When we range them [MCC] up about it, it was too late. They told us we couldn’t do anything about it.” (Marjorie, S04)

This is exacerbated by the reduction in advice, information, advocacy and low-level support services that went a long way in supporting people through difficult changes and mitigating negative outcomes.

“I find it stressful to deal with all these changes in what you can get and what you can’t get from social services anymore. There’s just no real information and nobody honestly tells you what’s going on. The council tell you everything’s great and not to worry but then send you massive bills and you don’t know what to pay them from. And then there are people leaving who have helped us out for years, like workers from the Alzheimer’s Society and so on.” (Carers comment)

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“Before the Alzheimer’s Society used to come but due to cuts one of the support workers, Miriam, lost her job and since then the Society has called twice. Miriam started visiting from the beginning and offered lots of support and had a trusting relationship with us. […] It has affected us greatly. She was a trusted person who offered advice and support on a number of things, gave advice on training for carers, blue badge, transport vouchers, etc. The change doesn’t affect [my aunt] because she doesn’t realise but [my uncle] was very affected by this loss. It was his chance to chat to someone and get respite away from caring 24 hours a day. Miriam’s shown empathy and had a laugh […] – above and beyond her job.” (Denise, S07)

“Since last year there have been two major changes: The charges for care have increased and this worries me a lot. […] I’m not sure how we’ll be able to manage financially. The other big difference is that we lost the support worker from the Alzheimer’s Society. Miriam was like my right arm so losing her is a big loss for me. She used to come and visit once a month and I could contact her whenever I needed to. Now I only get telephone support but it’s not enough. […] Last year in May or June I had a carers assessment but never got a carers budget or anything. Miriam would have followed that up and made sure I got something. Now there’s no one to do that sort of thing for us.” (Deirdre, S13)

An information, advice and advocacy service for older people describes the situation in the following way:

“In line with the VCS Service Review last year we lost most of the funding for our project, which has led to a drastic reduction in staffing and services offered [… which] has had a major effect on the communities we serve in the sense that they have less access to information and support, and have to wait longer for services. It’s especially concerning because the communities’ needs have increased. More people are trying to access our services than before and we expect demand to grow even further. Importantly, too, the make-up of our clients has changed slightly. Now even people who otherwise wouldn’t need anyone to advocate on their behalf are contacting us because they can’t get anywhere with Manchester City Council themselves. For example, I have been helping someone who is trying to arrange more support for a person with vascular dementia. They are outspoken and fairly aware of the system and their rights. However, they have become so worn down by attempting to get help from the Council again and again that they are now turning to us for support. In fact they’re close to a nervous breakdown in my view. Cases like this shouldn’t have to end up with us because the Council should just offer the necessary help without us having to put additional pressure on. It suggests serious failures in the system. Indeed, it feels as if everybody’s just left to their own devices.” (Older people’s organisation, P02)

The support worker highlights another important psychological effect of the RSCO: people with dementia and their carers feel increasingly isolated and abandoned and are losing trust in statutory services:

“It’s like it’s all on me now and I’ve got no one left to turn to.” (Carer comment)

“I feel the council treats elderly people with disregard and disdain. They fob you off when you’re asking for services and offer very little assistance. I think they’re afraid if they don’t get rid of you straight away they might have to give you something they can’t afford. In any case there is no trust. I don’t feel that social

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services have my best interest at heart. All they care about is saving money. People’s needs aren’t put first.” (Service user comment) “I feel very much left alone.” (Deirdre, S13)

“It feels as if the service is run for the benefit of the staff not the clients, especially since the old service manager retired and everything changed at the beginning of this year. I have no confidence in management.” (Noreen, S01)

“The Mental Health and Social Care Trust has no interest in people with young onset dementia and has never had any interest.” (Francine, S02)

“I was pretty much told directly by the social worker that the reason for giving us an assessment in November last year and then again in April this year was so that they didn’t have to make cuts twice in one year, which I think is outrageous. It certainly doesn’t help us or considers our need for stability, continuity and security.” (Carey, S12)

These responses highlight the stress and anxiety carers are experiencing. This is likely to have a knock-on effect on the people with dementia they care for. In addition, people with dementia feel more at ease with familiar routines, people and places. These can be jeopardised by the changes experienced as a consequence of the RSCO. Therefore, reducing entitlements or funds is likely to have a more adverse affect and lead to distress and the deterioration of symptoms, especially considering that people with dementia are more likely to lack capacity to understand why the changes occur. The interplay of different factors is illustrated by the following response:

“Since the RSCO came in we have had another assessment and the IB has been reduced even further. […] As a result we had to change the carers’ hours around and my dad now can’t go out every day anymore. He himself says that his walks are what keeps him stable and he gets angry and frustrated if he can’t go out. Even though my dad has always been a very gentle man who would never raise his voice or use swear words he now gets very irate with the carers. He’ll sit there ready with his hat on, stick in hand and can’t understand why they can’t go out. He’ll go “Why? Why? Why? Why?” and then start swearing at the carers. When I tried to explain the situation to him, i.e. that we need to spend the money on the most essential things, he said to me: “I get so very lonely here. I love seeing people” The next day he got himself up in the morning and put his clothes over the pull-ups and pyjamas. He wanted to prove to us that he could do it himself, that he could go out by himself. That’s how important it is to him and it’s heartbreaking not to be able to give him that. […] To be honest with you I can’t cope with it all at the moment and feel like running away. It’s difficult. My own health is deteriorating and I worry what would happen to my dad if I couldn’t support him or look after his budget anymore. There isn’t really anyone else who could take this on instead.” (Carey, S12)

Other respondents, too, highlight the need for stability and adequate support and the difficulties associated with recent changes.

“I have noticed that the carers are much more stressed than they used to be. They rush more than before and are in and out in a flash because they’re given

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more work to do and are under more pressure. Then lots of them leave the organisation and they have difficulty recruiting new staff. This can have a big impact on customers, too. In fact, we had lots of problems with the quality of Marie’s care when her usual carer left because then we got lots of different people who didn’t know how things worked, what they needed to do, what Marie was like and so on. We had murder with the carers for months and months. Now she’s got some regular carers again and everything is ticking along nicely but it’s taken us about a year to get there.” (Diane, S05) “I know a number of people who have cash IBs and employ personal assistants (PAs), who have had their budgets reduced since last year. This has a knock-on effect on PAs who last year might have earned £8 per hour and are now down to £7 or £6.50 per hour and/or had their hours reduced. For a number of PAs this means that they aren’t able to continue in this employment anymore, which means that the person receiving care has to find new PAs and has their continuity of care interrupted. This is especially disruptive for people with dementia.” (Professional comment) “It’s also affecting my mum who is very bored. Her behaviour changes because there is no stimulation.” (Nick, S06) “Tina and Tom are frightened that the council will not provide enough money to pay for the level of care Emma currently gets. They are very happy with the current day services and want her to stay there because she likes it, knows everybody there, and needs the routine. That gives Tina peace of mind. It would be horrible if she couldn’t go to the centre anymore and had to go somewhere else or stay at home.” (Tina & Tom, S10)

They also suggest that people with dementia are experiencing higher levels of social isolation as a consequence of entitlements to day services being reduced or day services not being adequate.

“It’s supposed to be respite for me but I know Sam’s miserable there so it isn’t very relaxing for me when he’s gone. I think about him all the time and worry that he’s not having a good time of it. Generally, I think those people who are still quite switched on don’t want to go there. […] We’ve got an IB so we can employ someone to take Sam out instead of going to the Young Onset service but it’s not quite the same because at the centre he can be with a group of people. Indeed the only reason he’s still going is because he’s met people there and become friendly with them. Before he used to love it but now it’s all gone. The atmosphere has gone completely and lots has changed without any consultation or discussion. We just have to put up with it.” (Noreen, S01) “People are receiving less support services, i.e. less visits from support workers, less time at day centres, and so on and that’s where the social aspect comes in again. People become more and more isolated at home which affects their mental health and general wellbeing.” (Focus group participant) “Of course less day centre provision leads to more social isolation, which has knock-on effects on people’s overall health and wellbeing as well as their reliance on services.” (BME organisation, P03)

Significantly professionals pick up on wider issues around day services provision as these comments highlight:

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“An elderly gentleman I support has Alzheimer’s disease and is very socially isolated. I think he would really benefit from attending a day centre and have referred him to social services three times already but he’s always been assessed as not requiring services because under [Fair Access to Care Services] FACS you only fall within the eligibility criteria if you require personal care, which he doesn’t.” (Professional comment) “If a customer is cared for by family carers they will be entitled to more day services provision because this also gives the family carers some respite. However, this means that someone who relies on care workers and is already more socially isolated, will also be entitled to less day service provision and get less social interaction this way, too.” (Professional comment) “Generally speaking the language the Council uses in relation to day services has changed; now the Council talks about ‘community involvement’ rather than ‘social isolation’. I think this is to shift the focus away from statutory service provision to communities filling in the gaps.” (BME organisation, P03) “We've heard that care managers are encouraged not to talk about day centres anymore but 'social inclusion' to steer people away from formal services.” (Professional comment) “I heard on the grapevine that the Directorate for Adults is trying to close down all day service provision by making it harder and harder for people to access it and then arguing that day centres don’t have enough customers to be economically viable.” (Professional comment)

We have outlined above how this can lead to an even greater reduction in available support services as communities and volunteers are unable to meet existing demands. To what extent increased financial pressures, stress and anxiety can affect people’s health and wellbeing is further demonstrated by the following focus group excerpts detailing recent cases advocacy and support workers have dealt with:

“As far as an advocacy organisation goes the RSCO doesn’t affect us directly at all because we don’t provide that type of service but we’re finding that more and more we’re supporting people with issues around care packages because of the various cuts. There are issues with people not getting the level of care that they need or people wanting to go home instead of a care home but can’t because of the financial restrictions and then find themselves in residential care against their wishes. […] People are distressed because they can’t understand why they have something when they come into hospital and then they leave and have less. What is happening is that they come into hospital, then they are re-assessed in preparation for discharge, and that’s where the changes kick in, which might mean a reduction in services. It might make the difference between going home and not going home. It’s that in a nut shell. It causes a lot of distress to people, especially the fact that they’re then going somewhere they’re not familiar with. I believe that if someone needs to move somewhere else they should at least be told from the beginning and prepared for it slowly. And you can look at sheltered flats and get in extra care support to enable someone to stay at home. That must particularly affect people with dementia because they need structure and continuity.” (Focus group participant)

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“I had a recent case where a gentleman went into hospital, was assessed there, found to have a high level of need and was then told he couldn’t go back to his own flat but had to go to a care home. He’s in the early stages of dementia but now has to live in a care home where all other residents are in very advanced stages. He’s got no one to talk to and is very isolated which has had a visible impact on his physical and mental health. Within two weeks of living there you could hardly recognise him.” (Focus group participant)

“There was a case of an old lady with dementia recently who was put on a stroke ward because there was no place anywhere else and then became much more dependent and immobile because staff weren’t always aware that she hadn’t had a stroke and treated her as if she did. As her condition deteriorated social services didn’t want to let her go back to the care home that she was perfectly happy in arguing she needed more substantial nursing care. In the end the situation was resolved because her son worked with the hospital staff to re-able his mum, who was then allowed to return to the care home she’d been living in before. It was a success story in the end but only because her son put up such a fight for her.” (Focus group participant)

In summary, where the RSCO has a psychological impact on people with dementia and their families it tends to

• cause greater stress and anxiety which in turn can affect physical health and wellbeing,

• be exacerbated by little or confusing information being provided and the reduction of information, advice, advocacy and support services,

• lead to carers feeling isolated and hopeless,

• cause distress and aggravation of symptoms due to breaks in routine and greater social isolation.

5. Availability of and access to services In terms of the availability of services, one issue highlighted in the study concerned the changes made to the provision of non-personal care services such as shopping or cleaning, which one respondent fundamentally disagreed with.

“I’m especially concerned about domestic services not being funded anymore. I myself have physical health problems and can’t clean my dad’s house. I’d be happy to do it if I could but I physically can’t. And cleaning can be a big job. Sometimes my dad might have an accident with his pull-ups and will try to clean it up himself but in the process distribute faeces all over the flat. These kinds of things need to be taken into consideration. They’re a part of life for some people and aren’t properly acknowledged or addressed. And generally everybody should have the right to a clean bed and a clean living environment. It’s essential and should be provided by social care.” (Carey, S12)

The demand for domestic services is also highlighted by the following responses:

“I had a phone call from my mothers dementia carer to tell me that she had an accident and didn’t make it to the toilet on time and that the carer wasn’t allowed to clean it up. It was left for me to get home to sort out even though all cleaning materials were readily available.” (Carer comment)

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“We provide a whole spectrum of homecare services including shopping and non-personal care. Already a lot of our customers have contacted us worried they will lose out on those services under the RSCO. We're now thinking of offering those low level services at a cheap price to help out but some people won't be able to afford that either. In any case I don't know how we're supposed to go in and make breakfast if there is no food in the home because we can't do the shopping anymore.” (Professional comment)

These comments emphasise the integral part domestic support can play in meeting a person’s social care needs. The latter might be particularly salient for people relying on incontinence pads as these are restricted in number, which is in itself a major issue and might lead to a greater need for washing and cleaning support.

“My father is incontinent and we have to use his pads sparingly because we are only allocated 2 per night and 2 per day. […] I feel we should be given more. My dad needs at least four a day but sometimes it’s not enough. There might be a little accident or my dad might just drink more. He has a kidney condition that means he needs to take lots of fluids, which I make sure he does.” (Marjorie, S04)

A second issue regarding the availability of services concerned the assessment process, which is seen as arduous, difficult to understand and difficult to navigate successfully:

“Everything takes far too long and much longer than they [the council] say and it’s more stress and worry for us. They’re also quite incompetent at times. […] They’re a bit disorganised.” (Tina & Tom, S10)

“The cost of care has gone up. It is difficult to understand why as no one seems to know what they are talking about.” (Niamh, S09)

The overall picture that emerges suggests that it is difficult for people to get a full assessment in the first place.

“They fob you off when you’re asking for services and offer very little assistance. I thin they’re afraid if they don’t get rid of you straight away they might have to give you something they can’t afford.” (Service user comment) “There is evidence that Older People who have been reassessed recently have had their entitlements to day services cut and sometimes this is done just through a little chat with the care managers rather than a full assessment. Also, a few people have told us that they didn't even get anything in writing to document the changes.” (Professional comment)

Moreover in some cases not all relevant factors were taken into account or key people not included in the assessment process. This sometimes resulted in appeals being necessary. On other occasions it was felt that the assessors needed to be more sensitive to the perspective of the applicant.

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Participant 1: Raising awareness is a massive issue, especially in terms of assessments and how to go about things. Families have to be

included in the process, you can’t just ask the person with dementia and expect to get the full picture.

Participant 2: A lot of money in the system gets wasted by family members and carers not being involved in the assessment process and then the outcome of the assessment having to be appealed and revisited. We come across many cases where the person with dementia said “I’m okay I don’t need anything” but that wasn’t the reality and then the outcome of the assessment has to be appealed.

(Focus group participants)

“Adult care assessors need to realise that if they start talking about how much the cost of care will be in front of the person who needs it, in many cases they will refuse to accept it due to them being proud and not wanting anyone to pay for their support.” (Carer comment)

“When the assessment was done in hospital she was taking medication that made her very sleepy and less mobile, which is probably why the nurse thought that from now on my mother needed to be hoisted and PEG fed but this is not true as now my mother walks again and eats normally.” (Carer comment)

Furthermore, the system as a whole is seen to be flawed. On one hand it is seen as not transparent. Customers comparing themselves to others often don’t understand the differences in entitlements and budgets. On the other it seems to disadvantage certain customer groups (in certain situations), for instance those not requiring high levels of personal care or those living alone.

“Customers who live with family members/informal carers are often assessed as needing more day services than customers living by themselves because of the knock-on effect on family members/informal carers. While this might be financially more sound it does seem to disadvantage customers living alone.” (Professional comment)

Finally, not all professionals carrying out assessments seem to be adequately trained or completing the process appropriately.

“Social workers and the people who carry out the assessments really do need to have training as I have seen a few times where the same question has been asked 2 or 3 times” (Carer comment) “I find that a lot of people don't even have their assessment letters so it's hard for them to challenge the outcome of an assessment or re-assessment.” (Professional comment)

The following response illustrates a number of these concerns:

“We used to be able to refer an older person to the council for day services. When we try to do that now we are told “We don’t really do that anymore” and that’s the end of the conversation. The same is true when older people ring up the council themselves. Most of the time they wouldn’t get beyond the initial telephone assessment at which stage other areas that the person might need help with aren’t really looked into or picked up on. People then either give up because it seems too difficult to get help, or pay for the service themselves. If

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they’re able to do that, that’s great but not everybody is, and on principle this way of going about things “flies in the face of the Wellbeing agenda”. From our point of view as an organisation we have realised that now we need to really push social workers to ensure they’re giving people a full face-to-face assessment rather than a quick chat over the phone. It’s also important to have family members or other people there at the assessment to support the older person and make sure the social worker is getting an accurate picture. I think sometimes older people can be more easily led and if you just ask the right kind of questions you’ll get the answers you’re looking for – in this case answers that justify not having to provide a service.” (BME organisation, P03)

These limitations of the assessment process are not new, however, the responses indicate that the situation has worsened since the introduction of the RSCO. As a consequence an Older people’s organisation recently sought funding and employed a worker specifically to deal with appeals in an attempt to meet increased demand resulting from the RSCO.

“We have appointed an appeals and advice worker to initially raise awareness of the appeals procedure and take on board the actual appeals […] The funding was only for four months, which finished end of June 2012. Now we have to go back to [the funder…] hoping that they will like it and give us more money to continue on. [We started this] in response to the fact that we effectively saw what was happening with the care packages and we could see that this could have an impact on us because people are likely to ring us if they have an issue and you can only turn around so many times and say “we can’t help you” before people lose faith. We could see the problem on the horizon and thought about how we could counter the problem and have an impact because the way it is at the moment there are not many places where people can actually go. [… We] had to appoint someone to deal with this specifically because we would have had a problem dealing with the additional demand with the resources we already had. We had to get another resource.” (Focus group participant)

It is even more concerning that we have received a high number of comments (8 in total) from different professionals regarding customers being advised not to ask for reassessments even if needs have increased as they are likely to be worse off than before. These responses demonstrate that the impact of the RSCO is widely acknowledged amongst health and social care professionals and generally regarded as detrimental.

“When my customers ask me about making changes to their support package I am reluctant to advise them to go for a reassessment as most of the time service users seem to lose out on services after reassessment. It seems safer not to say anything and hope your turn won't come for a while.” (Professional comment)

“I spoke to a care manager recently regarding a client with dementia who has been asking for a reassessment for some time. The care manager rang me to see if I or someone from the family would be there for the assessment because they were concerned. They told me that the customer had a high level of care, which was likely to be reduced following a reassessment so they were keen to ensure there were people present who knew about the care that was needed and could advocate on behalf of the client.” (Professional comment)

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"I visited a lady yesterday who cares for her father, who has dementia. On my previous visit I had referred her father to social services to arrange some day care. The social worker has visited and has said to her that he does not want to put the case to panel as it will mean a reassessment and if this happens her father may lose some of his existing support. Therefore it would be better if they made the arrangements for day care privately. This is what she plans to do, to pay privately for the day care as she is afraid that he will lose the support he presently has and is needing." (Professional comment)

“We have a customer who sometimes exhibits challenging behaviour, which we thought to address by excluding them from the service for a few days. However, we were pleaded with not to, because had the customer been excluded this would have triggered a re-assessment, which probably would have found there was no longer an entitlement to day care.” (Professional comment)

It is evident that the assessment process and customers’ ability to successfully challenge outcomes are crucial if individual people with dementia and their carers are to access services. However, it is also crucial to listen to them when commissioning services and deciding on entitlements. Two respondents point out that this has not happened before the RSCO was introduced as the consultation was neither accessible nor appropriate for people with dementia and their carers.

“The consultation on the RSCO was flawed, especially when it comes to people living with dementia. A lot of them are not able to contribute to such a consultation without considerable support, which was not given. Also, a lot of people don’t have access to a computer or the internet at home and find it difficult to access it somewhere else because of caring responsibilities.” (Carer comment)

“The council consultation on the cuts to social care was quite bad. I don’t have access to a computer and had to ask someone else to complete it for me. Although I don’t think that it actually mattered what I said. They didn’t listen anyway.” (Carer comment)

In summary, the RSCO limits access to and availability of services through:

• the discontinuation of particular services (domestic services, meals on wheels, etc.),

• a reduction in viable services and existing support arrangements as a consequence of an overall reduction of available business for providers and employment opportunities for workers,

• reframing existing needs in new terms (social isolation = community involvement),

• a flawed and over-stretched assessment process,

• flawed consultation with customers. 6. Quality of services The limitations the RSCO puts on accessing services can also affect the quality of such services.

“In line with the VCS Service Review last year we lost most of the funding for our project, which has led to a drastic reduction in staffing and services offered. We

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can no longer offer community training and only have one two full-time advocate left. This has had a major effect on the communities we serve in the sense that they have less access to information and support, and have to wait longer for services. The advocacy waiting list currently has ca 6 people on it and cases are progressing slowly as most are very complex.” (Older people’s organisation, P02)

The impact on other services seems more subtle and directly related to perceived levels of staff stress. The added stress contributes to service users getting less time with workers and agencies experiencing a higher level of staff turnover and sickness absence.

“I have noticed that the carers are much more stressed than they used to be. They rush more than before and are in and out in a flash because they’re given more work to do and are under more pressure. Then lots of them leave the organisation and they have difficulty recruiting new staff. This can have a big impact on customers, too.” (Diane, S05)

“I’m a care manager and my colleagues and I are all quite stressed and exhausted. You are trying the best you can but it's never good enough because there's always someone else to do something for and you simply don't have the time or resources. Do you think we enjoy telling people their budgets are cut or that they can't have something anymore? I don't and it's difficult to deal with emotionally, especially when you know that someone is going to get worse because of what you're doing. I guess it's no surprise that quite a few of my colleagues are off sick on stress or leaving to go somewhere else. I can still manage but if things get worse I'll also be looking for a different job. If somebody had told me what it would be like when I went to uni, I don't think I would have studied social work. It's a very tough job.” (Professional comment)

Undoubtedly this contributes to customers and other support professionals finding that:

• it is more difficult to engage with Manchester City Council,

• more mistakes are made,

• vital aspects of the care manager’s role (for instance chasing up benefit uptake) are neglected,

• there is a greater reliance on other organisations or services to make up for shortfalls.

Comments included:

“Our social worker is a nice man but hard work. He’ll just say “It’s cut backs, it’s cut backs”. (Marjorie, S04)

“Our social worker left last November and we didn’t get a new one til February. That wasn’t great either, not having anyone who’s responsible for you that you can contact to get things sorted out.” (Tina & Tom, S10)

“I know that some social workers have started referring people to us as an alternative to other services” (Luncheon club, P01)

“In my own experience you are having to chase, chase, chase [the Council] all the time. I think this is because social workers are completely overwhelmed and under too much pressure, and hence don’t have enough time to do everything.

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This might also be the reason for more mistakes being made. Since last year there have been a lot more incidents of missed appointments and meetings. For instance, last week I had an appointment with social workers to talk about a safeguarding concern but when I turned up the social worker in question was working from home that day. In the same week I had a best interest meeting at a sheltered housing scheme to which a psychiatrists and social worker came. Unfortunately, however, the scheme manager was on annual leave so the meeting couldn’t go ahead. Of course everybody makes mistakes but it is noticeable how many seem to be made at the moment. I imagine that’s because of how stressed everybody is. Related to that I have recently become aware that social workers will tell clients that we could do things for them instead as in “Diane could do that for you” or “Ask Diane to sort that out for you” […] again, I think social workers are doing it because they don’t have enough time themselves and are hoping we could help out. Generally speaking the take up of benefits is a real issue [… and] this isn’t followed up by social workers even though it is Council policy to do so. When I bring it up, they’ll say “so-and-so is an experienced social worker and should have followed up on the benefits situation.” but they just don’t, probably because there isn’t enough time.” (Older people’s organisation, P02)

“Another thing we have noticed is that it is getting harder and harder to engage with the Council and get information about ongoing cases, etc. Some care managers are better than others but overall there is very little communication, no updates on open cases, etc. and you have to follow everything through yourself, too, to make sure there’s an outcome at the end. “It’s commonplace now. You don’t expect anything different.” This is probably because they are very busy and overstretched so only the most essential tasks get done. While I empathise with the social workers I need to advocate on behalf of our clients and other elderly people in Manchester.” (BME organisation, P03)

This raises serious concerns about Manchester City Council’s ability to meet its statutory duties to protect vulnerable people and provide services to those with substantial and critical needs, especially coupled with the following concerns about safeguarding procedures.

“Linked to this is my concern about how MCC deal with safeguarding. It seems as if there is either a general inertia or lack of understanding around safeguarding. In any case it is very difficult to get actual decisions being made about safeguarding cases. They go on for months and months on end and it seems as if paper is being shuffled from one side of the desk to another but no actual measures are being taken. There is no obvious end point to safeguarding enquiries or a formal notification of a case being resolved or closed and how or why. Are there no targets for this? How is progress/compliance monitored?” (BME organisation, P03)

In summary, carers and support professionals find that:

• it is more difficult to maintain high quality services,

• there is greater potential for mistakes to be made,

• vital aspects of the care manager’s role (for instance chasing up benefit uptake) can be neglected.

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Findings: Suggestions for minimising the impact of changes Unsurprisingly perhaps some respondents feel that the impact of the RSCO on them cannot be minimised and that the changes need to be reversed. In addition, some point to wider systemic shortcoming and failures that need to be addressed in general.

“I’m not sure what could be done. I just need to get the services back we’ve lost. The current situation is impossible and I can’t cope for much longer.” (Max, S14)

“For us personally it would really help if we could get some day care for my dad because he really needs company and stimulation and we can’t give him enough anymore through the carers.” (Carey, S12)

“More support for carers, more help from social workers, reduction of cost. With regards to the pads I feel we should be given more.” (Marjorie, S04)

“We need more help to give both parents better lives and I don’t want to have to worry about eating into the budget by paying for additional daycare. “ (Nick, S06)

“For me it’s not so much about the recent cuts, it’s more about young onset dementia in general. Things need to change quite a lot across the board although I guess that’s even less likely to happen now.” (Francine, S02) “All social care should be free and paid for through our taxes. Continuing Healthcare is hard to get and needs to be available earlier.” (Denise, S07)

Other respondents feel that the following measures would help:

• Providing clearer information about changes and charges for services

“We can’t tell what we’re being charged for – clearer statements would help.” (Eamon, S03) “I think you always need good information so that should be provided as early as possible so that carers don’t have to worry about what might happen for too long. Caring is a very tough job. It’s relentless. You don’t need the stress of not knowing what’s going to happen on top of that.” (Tim, S11) “For [older people] there needs to be more information to make sure they get what they should and nobody is put in danger.” (Luncheon club, P01)

• Ensuring the continuity of support staff independent of role and organisation

“By keeping the frontline staff, the one’s who have formed relationships. It’s needed for people to see what the frontline staff did and the relationships they had formed before any redundancies were made.” (Denise, S07) “Our social worker left last November and we didn’t get a new one til February. That wasn’t great either, not having anyone who’s responsible for you that you can contact to get things sorted out.” (Tina & Tom, S10)

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• Offering more support in terms of coping with changes, especially for carers

“If there were someone to follow up budgets and assessments that would make it easier. I have health issues myself and there’s so much to do.” (Deirdre, S13)

• Being more creative in care planning and having a more efficient system

“Use budgets wisely and make sure the money goes on your clients rather than silly things like badly organised transport” (Noreen, S01) “Everything takes far too long and much longer than they [the council] say and it’s more stress and worry for us. They’re also quite incompetent at times. One time they were telling us they needed a spare set of keys urgently […] and then they lost it. They’re a bit disorganised.” (Tina & Tom, S10) “The worst thing for me would be if the hours of care Marie gets would be reduced. Because I don’t drive and rely on public transport it is difficult for me to get to Marie’s house even though it isn’t that far away. […] If the council have to make savings in our case it would make more sense to get me transport so that I could do the care rather than paying the care agency.” (Diane, S05)

Professionals strongly echo a need for better information and linked to this a need for more information, advice and advocacy services. They emphasise how funding cuts in this area are a false economy as they will create greater costs, especially in the long-term.

“We need to make sure we are using our resources as best as we can in these difficult economic times. I understand that cuts need to be made but it seems that those things that are the most crucial are being cut first, such as Information & Advocacy Services, services supporting people with complaints or in challenging the Council and NHS, etc. Without these services we can’t protect people adequately and in the current situation people are more and more likely to need protection. With regards to benefits for instance there is very little accessible information out there for people. Where are they supposed to go? To the Department of Work and Pensions? Well, they are cutting stuff and services, too, aren’t they? We cannot continue to cut everything and expect people to just manage without. They simply can’t and it raises real concerns about safeguarding and being able to fulfil your duty of care.” (Older people’s organisation, P02)

“We also need more advocacy and advice services. There is a real gap in specialist advocacy around social care and also a lack of skill locally. This leads to issues often being unresolved. Workers try to take up the issue and progress it as far as they can but then they hit a barrier where they don’t know where to go next or don’t have the necessary skills. However, it isn’t enough just to fund a service that deals with those people who are getting in touch themselves. We also need much more proactive outreach and awareness-raising services. Leaflets work for some people but they don’t work particularly well for our client group so we need to find other ways of getting information to them. This could maybe be done through GPs, or grassroots community outreach and word of mouth. Also, it would help if professionals had the relevant information and could

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make direct referrals themselves. Referring someone to a service is much more effective than giving them a leaflet.” (BME organisation, P03)

“ We need better information, advice and advocacy to make sure people access all available benefits and support services, can challenge statutory service providers if need be and have their right protected. [We also need to] take a long-term strategic approach and don’t make cuts now that are likely to cost you more money down the line.” (Focus group participants)

In addition professionals argue that in the current climate it is more crucial than ever to work in partnership across all sectors but especially within the VCS, although this is viewed as challenging.

“To respond to the very difficult current situation VCS organisations need to work more in partnership and try to see how we can pool our resources to be able to fill the gap the public sector cuts have created. As part of that we need to collectively take MCC to task, for instance, over Manchester being an “age friendly city”. There are many hidden or invisible elderly people out there for whom Manchester isn’t a very friendly place at all.” (BME organisation, P03)

“Now more than ever organisations across the VCS need to work in partnership to maximise their resources and the possible benefits to service users and carers. In that sense the cuts offer us new opportunities and remind us that we have to work more smartly and efficiently. However, I realise that the sector as a whole is already doing a lot for very little and I’m not sure how much more we can be stretched.” (Carers organisation, P05)

Participant 1: There is still a heck of a lot of resistance to the voluntary sector being at the table. “Ah I don’t want to work with you” and all that.

Participant 2: In terms of involvement or service provision? Participant 3: Yes, in every aspect.

(Focus group participants)

Finally, professionals emphasise the need to engage and involve service users in service planning and decision-making and the need to collect meaningful data that allows us to monitor the effects of policy changes or funding reductions.

“The council had to make some very tough decisions last year and we think they’ve done the best they could with what they’ve got. They have listened but couldn’t give everybody what they wanted. It’s important that they continue to talk to their client base and carers and allow that dialogue to inform their decisions. We need real involvement not consultation.” (Carers organisation, P04)

Participant 1: Are you able to look at a centre closing for example and then track

what that does to people? Participant 2: Some of it you can track and some of it is being tracked. For

instance, MCC are making a note of everyone who doesn’t access services anymore because they’ve become more expensive or for other reasons. Over time you’ll be able to see whether these people then come back into the system and with what level of need. […]

Participant 3: I think the Council are probably not the best people to audit this or to track people.

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Participant 2: Yes, I think part of the issue is that some of the data just isn’t available. MCC don’t necessarily tick a box saying “this person has dementia” in their system to go back to afterwards and analyse. From their perspective a person has a need for personal care, for instance, which might result from dementia but it isn’t captured like that. You couldn’t go back and say out of these 50 people we provide personal care to, 30 have dementia. You just don’t know from the system.

Participant 4: That’s why anecdotal evidence is so important. If you can’t produce the factual evidence you need to look at the anecdotal. I say “look that’s what’s happening” and then someone might come along and say “how can we measure that?” We need some measures because at the moment there is nothing. We really need this for dementia for the future.

Participant 1: In the hospital at one stage last year according to our reports we only had 14 people with dementia across the whole trust. Obviously that’s not true. It’s just a consequence of the way we code things. Dementia generally isn’t the primary diagnosis and so it didn’t used to appear anywhere or only very much further down the line. We’ve looked at this and are using different codes now that hopefully capture the situation more truthfully.

(Focus group participants)

“The problem with dementia is that it goes undiagnosed for so long and even when it is diagnosed often people get services not for the dementia itself but for other conditions they’ve developed as a consequence. Therefore, we can’t really say: This is how much dementia costs us. We now how much old age costs us or disability but not dementia. But dementia is a disease and not just a fact of aging so we need to look at it separately.” (Professional comment)

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Findings: Dementia mapping The Manchester Dementia Strategy 2009 to 2012 (Manchester City Council, 2009) reported estimates of 4,589 people with late (> 65 years) and 97 with early onset dementia (< 65 years) living in the City by 2012. These figures were predicted to rise further to a total of 4,746 people with late and 101 people with early onset by 2016, but are judged to be an underestimation. Currently 1760 people with dementia are known to Manchester City Council6 and 1,956 were registered with GP surgeries during 2010/117. Obviously there is a significant overlap between these two groups and they hardly represent the total number of people affected by dementia. In general it is difficult to determine the local prevalence of dementia accurately because the condition is still vastly under diagnosed, especially in the early stages. Attempts are being made to improve this situation both nationally and locally. For instance, Manchester Public Health are currently engaged in a pilot scheme in North scheme aimed at raising awareness of the ‘health’ needs of people with dementia and their carers amongst GPs (see Appendix 6 for further information) and Manchester LINk is looking at ways to improve early diagnosis and intervention. Another problem with determining local prevalence is incomplete reporting. This is the case in several distinct areas. In terms of social care incomplete reporting is a consequence of people being assessed for services based on their needs rather than their conditions. To illustrate this: of the 2,8678 people with dementia that have been known to Manchester City Council since the MiCARE system9 was established in 2008, 2,312 people have had a formal diagnosis recorded on their assessment, 499 have no formal diagnosis but are noted as having dementia as their primary service user sub group, and 45 have dementia detailed within their assessment but dementia is not listed as either their primary or secondary condition. However, Manchester City Council suspects this is an under-representation, as it will not include care home residents who have developed the illness since they moved in for example. It also does not account for those people who have not been referred to a dementia specific service and hence may well be categorised just as an ‘older person’ rather than ‘a person with dementia’, or those that have sufficient financial means to fund their own services and might therefore not be known to the authorities. In addition, MiCARE does not provide summary information as to the reasons people access particular services. This means that while it is possible to

6 1,319 of these have an open care package. 7 Figures for 2011/2012 are due to become available at the end of October 2012. 8 1,107 people with dementia have since passed away in the past three years, which explains the current figure of 1760 people. 9 The Manchester integrated Care and Recording Environment (MiCARE) is an administrative and reporting system used by the Directorate for Adults, Health and Wellbeing for care management purposes.

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determine, for instance, the number of older people attending generic day services, the system does not allow extracting the number of people with dementia receiving day care from the overall figure. The other complicating factor is that Manchester City Council are increasingly providing people with personal budgets, and do not routinely record what they choose to spend them on. This means that while we would be able to tell what amount a person with dementia is allocated to meet their needs, we would not necessarily know how much of this is spent on particular mainstream services. In terms of mental health services, too, poor reporting is an issue, especially in terms of determining dementia-specific expenditure. The information received from Manchester Mental Health and Social Care Trust (see Appendix 5) illustrates that the bulk of services for people with dementia is provided within multi-disciplinary settings dealing with a range of mental health issues in later life. Therefore, while we can calculate the overall cost of mental health services for older people, again, it is impossible to determine the cost of mental health services solely for people with dementia. Despite these issues with establishing accurate local prevalence of and costings for dementia, it is clear from the overview of existing statutory services for this client group (reported in full in Appendix 5) that a percentage of the estimated over 4,000 people with the condition in Manchester do not access any kind of formal service. Of course some of those may be self-funding services from independent or voluntary sector providers and others may be receiving services from VCS organisations that may in turn be funded by statutory providers. However, from the additional mapping of the voluntary and independent sector it is clear that the provision of specialised dementia services outside of the public sector is minimal, and that those services that exist are not adequately supported by public funds. For instance, the Alzheimer’s Society in Manchester, while receiving modest funding from Manchester City Council and NHS Manchester, uses additional funds from other sources such as charitable giving to meet the costs of their current service provision. Finally, some of the people with dementia who currently do not receive a service may simply not require any support at this stage. However, since dementia is a degenerative disease they are likely to require services at some stage. Moreover, the earlier people with dementia can be identified the higher the success rate of low-level interventions focused on enabling people to live independently for longer will be. This is not only desirable in terms of vastly improving the quality of life of people with dementia and their carers, but also in terms of significantly reducing health and social care costs overall. Still, it remains unclear how this demand for low-level support and preventative action can be achieved within the current budget constraints. At least the overview of existing statutory services for people with dementia suggests that there have not been major changes since the introduction of the RSCO. Unfortunately, it was not possible to collect complete figures for reasons outlined above, which limits the analysis. But the available figures from 1st October 2011 when compared to those from 1st May 2012 indicate that the number of current service users, referrals and employees have remained fairly stable overall. There are variations between service types and localities, and it is noticeable that in some cases the make-up of job roles within teams has

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changed. Overall these changes lead to a slight reduction in staff of 4.47 posts as Table 6 illustrates.

Table 4: Changes in staffing structures

Manager

Qualified Nurse

Unqualified Nurse

Occupational Therapist

Social Worker

Admin

Increase 1.00 2.55 4.40 0.00 0.00 1.00

Reduction 2.00 4.95 3.09 0.19 2.19 1.00

Balance -1.00 -2.40 1.31 -0.19 -2.19 0.00

Finally, we notice an increase in case loads overall with 2,471 current service users in October 2011 versus 2,657 in May 2012. Still, with the exception of the Admiral Nurses service in South Manchester statutory providers report no waiting lists for services. In summary, due to incomplete or unavailable date the only conclusions we can draw from our dementia mapping of Manchester are that:

• there are over 4,000 people with dementia in Manchester,

• a significant number of these are not identified and do not receive support services,

• there have been no major changes in statutory service provision since the introduction of the RSCO but small changes include slight variations in staffing and an overall reduction, as well as an increase in overall caseload,

• little public funding is made available to support specialised dementia services provided by VCS organisations.

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Conclusion The responses from our participants as outlined in previous sections very closely mirror what we expected to find, namely that:

1. fewer people with dementia and their carers are eligible for support services and/or have their needs met (both directly and as a consequence of individual budgets not covering the same level of provision as before),

2. those who meet eligibility criteria have to pay higher charges depending on their level of savings,

3. fewer people with dementia receive adequate support to remain independent in the community and hence are forced to move into residential care,

4. more people with dementia and their carers feel lonely, isolated and worried as a result of service cuts,

5. family carers experience higher levels of financial and emotional stress, which could lead to higher levels of neglect and abuse of people with dementia,

6. social care professionals are overstretched and less able to do their jobs effectively adding to concerns about effective safeguarding arrangements,

7. quality of care is decreasing as a consequence of reduced funding and workforces.

While our findings reflect the experience of people with dementia and their carers first and foremost, they also allow us to draw conclusions about the wider impact of the RSCO on other client groups requiring social care support in Manchester. We acknowledge that there are important differences between client groups in terms of specific needs and existing service infrastructure, however, we maintain that there is considerable crossover and that the recommendations made in the following section if implemented will be of equal benefit to other client groups. For instance, we argue that clients from other groups are also likely to experience reductions in their entitlements and individual budgets and a rise in personal contributions to their care leading to financial hardship, anxiety, stress, deterioration and needs not being met. In addition, other client groups, too, are likely to struggle with the loss of alternative provision through the independent or voluntary sector, and the reduction in information, advice and advocacy services. Therefore, this study can inform a wider debate about how people in Manchester and other parts of the country are affected by public funding cuts and how scarce resources should be utilised in times of increasing financial pressures. Most importantly, this study can act as a model for anyone wanting to explore these issues for other client groups or in a different locality. Of course small-scale qualitative research of this kind has inherent limitations and cannot replace the gathering of larger-scale quantitative data needed to determine wider population needs and commissioning priorities. Although it can add to the later a much needed emphasis on individual experience and a necessary recognition of the complexity of interrelated, multi-level cause and effect relationships. As such its contribution must not be disregarded.

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Recommendations Based on the findings discussed above we recommend a number of strategic and practical improvements, most of which fall within the responsibility of statutory service providers (including but not limited to Manchester City Council, NHs Manchester and Manchester Mental Health and Social Care Trust) although some of them require the co-operation of private and voluntary sector agencies as well as partnership-working across health and social care.

1. Safeguarding needs to be everybody’s business. Make safeguarding considerations a key factor in the strategic planning and commissioning of all health and social care services by prioritising safeguarding at the level of the Manchester Health and Wellbeing Board and their Health and Wellbeing Strategy. Review the Adults Safeguarding Strategy for Manchester in light of the findings reported here to ensure safeguarding concerns are addressed, the strategy encompasses public, private and voluntary sector providers, and makes the most of shared training opportunities and existing resources such as the Manchester Voluntary Sector Safeguarding Toolkit10 and the Action on Elder Abuse Advocacy Toolkit.11

2. Policy and funding decisions need to be based on evidence.

Gather quantitative and qualitative data that allows us to measure the impact of policy and funding decisions on different client groups and make sure that case management and administrative systems enable more accurate reporting. Ensure that the outcomes of local health and social care research are available to all interested parties across public, private and voluntary sector boundaries – this could be done by building on existing mechanisms for collecting data from a variety of agencies for the Joint Strategic Needs Assessment (JSNA) or by developing a local research/information hub/database potentially supported by HealthWatch Manchester. Take the findings reported here into account when carrying out Equality Impact Assessments to determine future changes in the provision of health and social care for people with dementia.

3. Investment into information, advice and advocacy support needs to

be increased. Make sure the public can access the information and support they require to successfully navigate the system by paying particular attention to the requirements of seldom heard and vulnerable groups – Digital by Default, while being cost effective, does not meet the needs of all groups and some people including people with dementia need additional support.

10 Available from Manchester Community Central at http://www.manchestercommunitycentral.org/ voluntary-sector-safeguarding-toolkit 11 Available from Action for Elder Abuse at http://www.elderabuse.org.uk/Documents/AEA%20 guide%20-%20Advocacy%20-%20toolkit.pdf

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Increase funding for advice and advocacy services to cope with increased demand under the RSCO – investing resources here will significantly reduce support costs that are certain to arise as a knock-on effect of the RSCO. Ensure independent brokerage support is widely available, accessible, and - for individual budget holders - resourced through the Resource Allocation System. Lobby the Department of Health to take system-wide action on care financing along the lines of recommendations made by the Dilnot Commission (Commission on Funding of Care and Support, 2011) – until the system undergoes major reform clients will be left to suffer uncertainty and unfairness.

4. Service users need to be meaningfully involved12 in decision-making.

Do not design engagement and involvement activities to support decisions that have already been made, but meaningfully involve a significant number of clients, their families and wider stakeholders in the decision-making process from the very start – this will make sure decisions reflect actual local need and preferences, and resources are used wisely Use established methods for collaborative decision-making such as Participatory Budgeting; Work in partnership with other organisations to coordinate engagement and involvement activities in the interest of clients, e.g. run joint consultations aimed at particular client groups rather than individual consultations centred around a particular service; Establish HealthWatch Manchester on solid foundations and provide sufficient resources for it to be a strong, independent service user advocate and an accessible avenue for the public to influence health and social care services

5. Commissioning needs to be geared more significantly towards upstream rather than downstream investment. Use a greater percentage of public funds for prevention and early intervention activities that have a trickle-down effect further on down the line rather than focusing resources predominantly on treatment and support provision – this is proven to be more cost effective and of greater long-term benefit; Develop a long-term strategic vision for integrated health and social care commissioning in Manchester that balances short-term needs for budget reductions with long-term cost projections and service demands – this also needs to take into account the significant contributions of established support staff and protect supportive relationships by ensuring greater flexibility and continuity across roles and organisations; stop-start approaches to commissioning erode this

12 Meaningful involvement in a decision-making process is defined here as involvement that is not focused on achieving a predetermined outcome, is part of the process from the very beginning, and meets the needs of participants in terms of how, when, and where they are to be involved and what supporting resources including training they might require.

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In addition to the above, we have the following practical recommendations for particular organisations: Directorate for Adults, Health & Wellbeing at Manchester City Council

• Improve financial communications and billing information.

• Improve client communication, especially about major changes such as those resulting from the RSCO – this could be done through a client reference or reading group.

• Review the Resource Allocation System to ensure it provides adequate resources for people with dementia, especially in terms of specialised day service provision.

• Address inadequate levels of staffing in care management to safeguard and support clients by preventing high levels of employee burnout, absence, and turnover.

• Provide training to make sure care managers have up-to-date information about general welfare benefits and entitlements and are able to assist clients in identifying available alternative sources of support.

• Review safeguarding procedures to ensure that outcomes of referrals are communicated to referring agencies.

• Review arrangements for incontinence support to ensure clients individual circumstances are taken into account and they are not restricted to a set number of incontinence pads – restricting access to incontinence pads severely limits clients’ dignity.

Manchester Mental Health and Social Care Trust

• Review the Young Onset Dementia Service and carry out an open, unstructured consultation exercise to gage client satisfaction.

Voluntary and Community Sector (VCS) organisations

• Work in partnership with other VCS organisations to maximise your ability to deliver positive outcomes for clients and increase cost effectiveness.

• Join statutory providers in making safeguarding a priority for Manchester.

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References • Alzheimer’s Society (2007). Dementia UK: a report to the Alzheimer’s Society

by King’s College London and London School of Economics. London: Alzheimer’s Society.

• Alzheimer’s Society (2012). Dementia 2012: a national challenge. London: Alzheimer’s Society.

• Carers UK (2012). Carers Scotland calls for radical overhaul of benefits and care system to prevent carers reaching breaking point. Available from http://www.carersuk.org/newsroom-scotland/item/198-carers-scotland-calls-for-radical-overhaul-of-benefits-and-care-system-to-prevent-carers-reaching-breaking-point?qh=YTo1OntpOjA7czo2OiJzdHJlc3MiO2k6MTtzOjg6InN0cmVzc2VzIjtpOjI7czo4OiJzdHJlc3NlZCI7aTozO3M6OToic3RyZXNzZnVsIjtpOjQ7czoxMDoic3RyZXNzZWQnLCI7fQ%3D%3D [accessed on 22 September 2012].

• Chenoweth, B. and Spencer, B. (1986). Dementia: The experience of family caregivers. Gerontologist, 26, 267-72.

• Cohen, L. and Manion, L. (1994). Research methods in education (4th edition). London: Croom Helm.

• Dementia Action Alliance (2012). YouGov polling on public attitudes to cuts to services for people with dementia. Available from http://dementiaaction.org.uk/downloads/file/35/yougov_polling_on_public_attitudes_to_cuts_to_services_for_people_with_dementia [accessed on 22 September 2012].

• Department of Health (2009). Living well with dementia: a national dementia strategy for England. London: Department of Health.

• Department of Health (2011). NHS Operating framework 2012/13. London: Department of Health.

• Department of Health (2012). Dementia campaign launches. Available from http://dementia.dh.gov.uk/dementia-campaign-launches/ [accessed on 22 September 2012].

• Fernandez, J.-L. and Forder, J. (2012). The impact of budget cuts on social care services for older people. Available from http://www2.lse.ac.uk/LSEHealthAndSocialCare/pdf/Fernandez_Forder_PDF.pdf [accessed on 22 September 2012].

• Hastings, A., Bramley, G., Bailey, N. and Watkins, D. (2012). Serving deprived communities in a recession. York: Joseph Rowntree Foundation.

• Haley, W.E., Levine, E.G., Brown, S.L. and Bartolucci, A.A. (1987). Stress appraisal, coping and social support as predictors of adaptational outcome among dementia caregivers. Psychology and Aging, 2, 323- 330.

• Kagan, C., Burton, M. and Siddiquee, A. (2007). Action research. In C. Willig and W. Stainton-Rogers (eds), A handbook of qualitative research in psychology. London: Sage.

• Liquid Personnel (2012). Social Work Survey: impact of public sector spending cuts. Available from http://www.liquidpersonnel.com/home-page/new-social-work-survey/ [accessed on 22 September 2012].

• Mencap (2012). Stuck at home: the impact of day service cuts on people with a learning disability. London: Mencap.

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• National Audit Office (2007). Improving services and support for people with dementia. London: The Stationery Office.

• National Audit Office (2010). Improving dementia services in England: an interim report. London: The Stationery Office.

• NHS Right Care (2011). NHS Atlas of variation in healthcare. London: NHS Right Care.

• Pope, C., Ziebland, S. and Mays, N. (2000). Qualitative research in health care: analysing qualitative data. BMJ, 2000, 320, 114-116.

• Ritchie, J. and Spencer, L. (1994). Qualitative data analysis for applied policy research. In A. Bryman and R.G. Burgess (eds), Analysing qualitative data. London: Routledge.

• Yin, R.K. (1994). Case study research: designing and methods (2nd edition). London: Sage

• Zarit, S., Orr, N. and Zarit, J. (1985).The hidden victims of Alzheimer's disease: families under stress. New York: New York University Press.

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Appendices Appendix 1: Carer case study response form

Dementia Care in Crisis? - Carer Case Study

Please consult our Information Sheet for Participants before completing this case study. If you require further information or would prefer to talk to somebody about your experiences, please contact Valeska on 0161 874 2190 or by email to valeska@theBHA.org.uk. Who is this case study about? Please briefly describe yourself including information about your: - age - sex - where you live (neighbourhood, ward or locality) - ethnicity - the person you care for (their age, sex, where they live, ethnicity, when they were diagnosed,

their level of need, etc.)

What impact does the Redefined Social Care Offer have? Please describe the impact the RSCO has on you including information about: - the services and support either you or the person you support used to receive - what has changed since the RSCO has come into effect - how any changes affect you (e.g. financially, emotionally, physically, etc.) - how any changes affect the person living with dementia (e.g. financially, emotionally,

physically, etc.)

What could be done to minimise the impact of RSCO? Please describe ways in which the impact of the RSCO could be minimised for you and/or the person you support.

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Appendix 2: Organisation case study response form

Dementia Care in Crisis? - Organisation Case Study

Please consult our Information Sheet for Participants before completing this case study. If you require further information or would prefer to talk to somebody about your experiences, please contact Valeska on 0161 874 2190 or by email to valeska@theBHA.org.uk. Who is this case study about? Please briefly describe the organisation, service or project this case study is about including: - aims - what it does - how long it has been running - where it operates

What impact does the Redefined Social Care Offer have? Please describe the impact the RSCO has on the organisation, service or project including information about: - what has changed since the RSCO has come into effect - how any changes affect service users or participants

What could be done to minimise the impact of RSCO? Please describe ways in which the impact of the RSCO could be minimised for for the organisation, service or project.

Appendix 3: Mapping response form

Organisation Service or Project

Contact Description Specialised (yes/no)

Locality covered

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Appendix 4: FACS bandings and eligibility criteria for individuals

Critical – when: • life is, or will be, threatened; and/or • significant health problems have developed or will develop; and/or • there is, or will be, little or no choice and control over vital aspects of the

immediate environment; and/or • serious abuse or neglect has occurred or will occur; and/or • there is, or will be, an inability to carry out vital personal care or domestic

routines; and/or • vital involvement in work, education or learning cannot or will not be

sustained; and/or • vital social support systems and relationships cannot or will not be

sustained; and/or • vital family and other social roles and responsibilities cannot or will not be

undertaken

Substantial – when • there is, or will be, only partial choice and control over the immediate

environment; and/or • abuse or neglect has occurred or will occur; and/or • there is, or will be, an inability to carry out the majority of personal care or

domestic routines; and/or • involvement in many aspects of work, education or learning cannot or will

not be sustained; and/or • the majority of social support systems and relationships cannot or will not be

sustained; and/or • the majority of family and other social roles and responsibilities cannot or will

not be undertaken

Moderate – when • there is, or will be, an inability to carry out several personal care or domestic

routines; and/or • involvement in several aspects of work, education or learning cannot or will

not be sustained; and/or • several social support systems and relationships cannot or will not be

sustained; and/or • several family and other social roles and responsibilities cannot or will not be

undertaken

Low – when • there is, or will be, an inability to carry out one or two personal care or

domestic routines; and/or • involvement in one or two aspects of work, education or learning cannot or

will not be sustained; and/or • one or two social support systems and relationships cannot or will not be

sustained; and/or • one or two family and other social roles and responsibilities cannot or will

not be undertaken

Source: Eligibility Criteria Framework, from DH (2010) paragraph 54

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Appendix 5: Information requested and received from statutory service providers13

as of 01/10/11 as of 01/05/12

CMHTs for Older People Provided by MMHSCT

North

North CMHT West Sector The Later Life Community Mental Health Teams (CMHTs) provide assessment, treatment, rehabilitation and support for older people, their carers and families. They are made up of health care professionals and social workers.

The Later Life Community Mental Health Teams (CMHTs) provide assessment, treatment, rehabilitation and support for older people, their carers and families. They are made up of health care professionals and social workers.

Number of active cases/ service users 143 163

Is there a waiting list? No No

Number of referrals in last three months 106 72

Cost (if possible to determine) Not available specific to dementia Not available specific to dementia

available staff (if known)

Team Manager 0.00 Qualified Nurses 7.85 Local Authority Staff 1.86 Unqualified Nurses 3.00 Occupational Therapy 1.80 Admin & Clerical 1.39

Team Manager 1.00 Qualified Nurses 7.45 Local Authority Staff 1.90 Unqualified Nurses 3.00 Occupational Therapy 1.68 Admin & Clerical 1.39

North CMHT East Sector The Later Life Community Mental Health Teams (CMHTs) provide assessment, treatment, rehabilitation and support for older people, their carers and families. They are made up of health care professionals and social workers.

The Later Life Community Mental Health Teams (CMHTs) provide assessment, treatment, rehabilitation and support for older people, their carers and families. They are made up of health care professionals and social workers.

Number of active cases/ service users 120 110

Is there a waiting list? No No

Number of referrals in last three months 71 75

13 This does not include additional information provided in an alternative format by Manchester City Council, which has been reported in the section ‘Findings: Dementia mapping’.

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Cost (if possible to determine) Not available specific to dementia Not available specific to dementia

available staff (if known)

Team Manager 1.00 Qualified Nurses 4.00 Local Authority Staff 2.00 Unqualified Nurses 4.00 Occupational Therapy 1.80 Admin & Clerical 1.00

Team Manager 1.00 Qualified Nurses 5.00 Local Authority Staff 2.00 Unqualified Nurses 4.00 Occupational Therapy 1.80 Admin & Clerical 1.00

Central

Central CMHT Central West The Later Life Community Mental Health Teams (CMHTs) provide assessment, treatment, rehabilitation and support for older people, their carers and families. They are made up of health care professionals and social workers.

The Later Life Community Mental Health Teams (CMHTs) provide assessment, treatment, rehabilitation and support for older people, their carers and families. They are made up of health care professionals and social workers.

Number of active cases/ service users 59 66

Number of referrals in last three months 28 21

Is there a waiting list? No No

Cost (if possible to determine) Not available specific to dementia Not available specific to dementia

available staff (if known)

Team Manager 1.00 Qualified Nurses 4.80 Local Authority Staff 2.00 Unqualified Nurses 4.00 Occupational Therapy 1.00 Physiotherapy 0.80 Admin & Clerical 1.00

Team Manager 1.00 Qualified Nurses 3.60 Local Authority Staff 2.00 Unqualified Nurses 3.00 Occupational Therapy 1.00 Physiotherapy 0.80 Admin & Clerical 1.00

Central CMHT Central East The Later Life Community Mental Health Teams (CMHTs) provide assessment, treatment, rehabilitation and support for older people, their carers and families. They are made up of health care professionals and social workers.

The Later Life Community Mental Health Teams (CMHTs) provide assessment, treatment, rehabilitation and support for older people, their carers and families. They are made up of health care professionals and social workers.

Number of active cases/ service users 72 79

Number of referrals in last three months 30 36

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Is there a waiting list? No No

Cost (if possible to determine) Not available specific to dementia Not available specific to dementia

available staff (if known)

Team Manager 0.80 Qualified Nurses 4.80 Local Authority Staff 2.00 Unqualified Nurses 4.00 Occupational Therapy 0.93 Admin & Clerical 1.53

Team Manager 0.80 Qualified Nurses 4.00 Local Authority Staff 1.81 Unqualified Nurses 4.00 Occupational Therapy 1.00 Admin & Clerical 1.53

South

South – CMHT Hall Lane The Later Life Community Mental Health Teams (CMHTs) provide assessment, treatment, rehabilitation and support for older people, their carers and families. They are made up of health care professionals and social workers.

The Later Life Community Mental Health Teams (CMHTs) provide assessment, treatment, rehabilitation and support for older people, their carers and families. They are made up of health care professionals and social workers.

Number of active cases/ service users 79 77

Is there a waiting list? No No

Number of referrals in last three months 57 65

Cost (if possible to determine) Not available specific to dementia Not available specific to dementia

available staff (if known)

Team Manager 1.00 Qualified Nurses 4.11 Local Authority Staff 2.00 Unqualified Nurses 1.00 Occupational Therapy 1.00 Admin & Clerical 1.00

Team Manager 0.00 Qualified Nurses 4.11 Local Authority Staff 2.00 Unqualified Nurses 1.00 Occupational Therapy 1.00 Admin & Clerical 0.00

South – CMHT The Stables The Later Life Community Mental Health Teams (CMHTs) provide assessment, treatment, rehabilitation and support for older people, their carers and families. They are made up of health care professionals and social workers.

The Later Life Community Mental Health Teams (CMHTs) provide assessment, treatment, rehabilitation and support for older people, their carers and families. They are made up of health care professionals and social workers.

Number of active cases/ service users 55 44

Is there a waiting list? No No

Number of referrals in last three months 55 44

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Cost (if possible to determine) Not available specific to dementia Not available specific to dementia

available staff (if known)

Team Manager 1.00 Qualified Nurses 2.00 Local Authority Staff 2.00 Unqualified Nurses 1.00 Occupational Therapy 1.00 Admin & Clerical 1.00

Team Manager 1.00 Qualified Nurses 2.00 Local Authority Staff 2.00 Unqualified Nurses 1.00 Occupational Therapy 1.00 Admin & Clerical 1.00

Dementia Treatment Clinics Provided by MMHSCT

North – brief description of the service The treatment service is for patients diagnosed with Alzheimer’s or mixed Alzheimer’s and Vascular type dementia who are on acetyl cholinesterase inhibitor ( treatment for dementia). They are seen by either a nurse or clinical psychologist every 6 months for assessment of cognitive function and behaviour. The clinic is open every Monday 9-12.30pm except on Bank Holidays

Number of active cases/ service users 243 248

Is there a waiting list? No No

Number of referrals in last three months 37 3

Cost (if possible to determine) Not available specific to dementia Not available specific to dementia

available staff (if known)

3 Community Mental Health Nurses 1 Assistant Psychologist

Memory Clinics Provided by MMHSCT

North – brief description of the service The Memory Service in North exists within the Community Mental Health Team and offers similar services to those described below for South Manchester.

The Memory Service in North exists within the Community Mental Health Team and offers similar services to those described below for South Manchester.

Number of active cases/ service users N/A As before

Number of referrals in last three months N/A As before

Is there a waiting list? N/A As before

Cost (if possible to determine) N/A As before

South – brief description of the service The Trust's Memory Clinics are specialist services which comprehensively assess and diagnose the

The Trust's Memory Clinics are specialist services which comprehensively assess and diagnose the

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nature of a person's memory difficulties. The Trust has clinics based at Laureate House at Wythenshawe Hospital and Park House at North Manchester General Hospital. The Memory Clinics take referrals primarily from General Practitioners (GPs) and aim to meet the needs of people who are concerned they may have a memory problem. The clinics are staffed by specialist doctors, nurses and psychologists qualified in diagnosing and treating memory problems. The service comprehensively assesses and diagnoses the nature of the person's memory difficulties before reporting to the GP, and advising on further treatment or intervention. Everyone referred to the clinic will be seen initially by a specialist named nurse, ideally in the client's own home. The results of this first assessment will help decide who the client will see next in order to best meet their individual needs and subsequent visits are usually to outpatient offices where they will usually be seen by either a nurse or clinical psychologist and sometimes by a doctor. The Trust memory clinics comprehensively assess and diagnose the nature of a client's memory difficulties.

nature of a person's memory difficulties. The Trust has clinics based at Laureate House at Wythenshawe Hospital and Park House at North Manchester General Hospital. The Memory Clinics take referrals primarily from General Practitioners (GPs) and aim to meet the needs of people who are concerned they may have a memory problem. The clinics are staffed by specialist doctors, nurses and psychologists qualified in diagnosing and treating memory problems. The service comprehensively assesses and diagnoses the nature of the person's memory difficulties before reporting to the GP, and advising on further treatment or intervention. Everyone referred to the clinic will be seen initially by a specialist named nurse, ideally in the client's own home. The results of this first assessment will help decide who the client will see next in order to best meet their individual needs and subsequent visits are usually to outpatient offices where they will usually be seen by either a nurse or clinical psychologist and sometimes by a doctor. The Trust memory clinics comprehensively assess and diagnose the nature of a client's memory difficulties.

Number of active cases/ service users 1222 1361

Number of referrals in last three months 230 293

Is there a waiting list? No No

Cost (if possible to determine)

available staff (if known)

Service Manager 1.00 Qualified Nurses 2.00

Service Manager 1.00 Qualified Nurses 1.00

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Psychology 1.00 Admin & Clerical 1.00

Psychology 1.00 Admin & Clerical 2.00

Young Onset Dementia Service Provided by MMHSCT MMHSCT

brief description of the service Provides assessment, treatment, care co-ordination and support to people under 65 with a primary diagnosis of dementia whose needs are complex and their carers

Provides assessment, treatment, care co-ordination and support to people under 65 with a primary diagnosis of dementia whose needs are complex and their carers

Number of active cases/ service users 28 30

Number of referrals in last three months 2 4

Is there a waiting list? No No

Cost (if possible to determine)

available staff (if known)

Team Manager 1.00 Qualified Nurses 2.20 Local Authority Staff 2.00 Unqualified Nurses 2.75 Admin & Clerical 0.80

Team Manager 1.00 Qualified Nurses 1.67 Unqualified Nurses 5.75 Admin & Clerical 0.80

Day Care Provided by MMHSCT MMHSCT

Bridges Day Unit – brief description of the service

Bridges Day Unit caters for older adults, with functional mental health needs such as those diagnosed with depression, anxiety, bipolar disorder or schizophrenia. The service offers both individual support (from an assigned Key Worker) and group therapies. The team consists of a manager, three registered mental health nurses and two clinical support workers and also maintain close working links with others involved with the client's care. Bridges Day unit offers a range of groups such as:

• Relaxation

• Arts and crafts

• Tai Chi

• Activity groups

Bridges Day Unit caters for older adults, with functional mental health needs such as those diagnosed with depression, anxiety, bipolar disorder or schizophrenia. The service offers both individual support (from an assigned Key Worker) and group therapies. The team consists of a manager, three registered mental health nurses and two clinical support workers and also maintain close working links with others involved with the client's care. Bridges Day unit offers a range of groups such as:

• Relaxation

• Arts and crafts

• Tai Chi

54

• Chair based exercises

• Creative writing

• Client forum A range of closed groups may also be offered, depending on the service users needs. These can include:

• Anxiety management

• Walking group

• Men's and women's groups

• Depression management Clients generally attend the Unit for at least two days a week, usually for a minimum of six to eight weeks, although this can vary according to need. During the first six to eight weeks the service user will be invited along to a Review Meeting with the consultant psychiatrist and other professionals. A carer or member of the service user's family can also attend these meetings. The Unit works to prepare service users for a successful discharge within their agreed recovery plan and this could include initial visits to community services and an invitation to attend at the Unit's drop-in service.

• Activity groups

• Chair based exercises

• Creative writing

• Client forum A range of closed groups may also be offered, depending on the service users needs. These can include:

• Anxiety management

• Walking group

• Men's and women's groups

• Depression management Clients generally attend the Unit for at least two days a week, usually for a minimum of six to eight weeks, although this can vary according to need. During the first six to eight weeks the service user will be invited along to a Review Meeting with the consultant psychiatrist and other professionals. A carer or member of the service user's family can also attend these meetings. The Unit works to prepare service users for a successful discharge within their agreed recovery plan and this could include initial visits to community services and an invitation to attend at the Unit's drop-in service.

Number of active cases/ service users 9 10

Average day care entitlement (in hours)

Number of referrals in last three months 9 5

Is there a waiting list? No No

Cost (if possible to determine) Not available specific to dementia Not available specific to dementia

available staff (if known)

Team Manager 1.00 Qualified Nurse 3.69 Unqualified Nurses 2.00

Team Manager 1.00 Qualified Nurses 3.00 Unqualified Nurses 2.00

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Phoenix Assessment Unit – brief description of the service

The Phoenix Assessment Unit is based at the Mine head Resource Centre in Withington, South Manchester. It is a multi-disciplinary service that provides assessment and treatment for people over the age of 65 with either time limited disorders or serious and enduring mental health problems. However, there may be occasions when services are provided for people under 65 if their illness makes this appropriate. The Unit is linked to the Community Mental Health Teams based at the Stables and the CMHT in Hall lane and in-patient services on Cavendish Ward to provide a comprehensive service to patients and their carers. The Unit offers assessment and treatment for Older Adults with severe and enduring mental health needs, working to monitor mental health, prevent recurrent relapse, aid early discharge from hospital. The service is committed to using the recovery model (step up, step down model) to maximise service users' independence and quality of life. The Phoenix Assessment Unit provides a safe, friendly and supportive environment which encourages independence and rehabilitation of social skills and health promotion for service users in line with local and national policy. The Unit also provides support for carers, making information as accessible as possible. Service users are referred to the Unit either by their Community Psychiatric Nurse (CPN) or Consultant Psychiatrist for a for a six to eight week assessment period. An initial Care Programme Approach meeting is then arranged to discuss a treatment plan with the service user, their carer, and members of the multi-disciplinary team. All service users go through a comprehensive assessment and are offered choices as

The Phoenix Assessment Unit is based at the Mine head Resource Centre in Withington, South Manchester. It is a multi-disciplinary service that provides assessment and treatment for people over the age of 65 with either time limited disorders or serious and enduring mental health problems. However, there may be occasions when services are provided for people under 65 if their illness makes this appropriate. The Unit is linked to the Community Mental Health Teams based at the Stables and the CMHT in Hall lane and in-patient services on Cavendish Ward to provide a comprehensive service to patients and their carers. The Unit offers assessment and treatment for Older Adults with severe and enduring mental health needs, working to monitor mental health, prevent recurrent relapse, aid early discharge from hospital. The service is committed to using the recovery model (step up - step down model) to maximise service users' independence and quality of life. The Phoenix Assessment Unit provides a safe, friendly and supportive environment which encourages independence and rehabilitation of social skills and health promotion for service users in line with local and national policy. The Unit also provides support for carers, making information as accessible as possible. Service users are referred to the Unit either by their Community Psychiatric Nurse (CPN) or Consultant Psychiatrist for a for a six to eight week assessment period. An initial Care Programme Approach meeting is then arranged to discuss a treatment plan with the service user, their carer, and members of the multi-disciplinary team. All

56

to their future care. They are then allocated a specific member of staff to be their care coordinator/associate nurse who will discuss their needs with them and work out a personalised plan of care. Staff are encouraged to help the Client to identify their own goals and work with them to achieve these goals as part of the recovery model. Following a period of assessment the necessary care arrangements are made to prepare clients for discharge and they are encouraged to access the various services and groups within their local community. Transport and free lunch is provided for all service users.

service users go through a comprehensive assessment and are offered choices as to their future care. They are then allocated a specific member of staff to be their care coordinator/associate nurse who will discuss their needs with them and work out a personalised plan of care. Staff are encouraged to help the Client to identify their own goals and work with them to achieve these goals as part of the recovery model. Following a period of assessment the necessary care arrangements are made to prepare clients for discharge and they are encouraged to access the various services and groups within their local community. Transport and free lunch is provided for all service users.

Provided by MMHSCT MMHSCT

Number of active cases/ service users 33 35

Average day care entitlement (in hours)

Number of referrals in last three months 9 10

Is there a waiting list? No No

Cost (if possible to determine) Not available specific to dementia Not available specific to dementia

available staff (if known)

Team Manager 1.00 Qualified Nurses 3.14 Unqualified Nurses 3.39

Team Manager 1.00 Qualified Nurses 4.14 Unqualified Nurses 3.36

Hall Lane – brief description of the service Day care for older people is the provision of activities, events and support aimed at promoting independence and social inclusion. There are 25 places Monday to Friday and 10 on Saturday. They are targeted at older people with mental health issues, including dementia.

Provided by Manchester City Council

Number of active cases/ service users There are 37 people on the register, attending for from 1 to 4 days a week.

Average length of stay (in days)

57

Number of referrals in last three months

Is there a waiting list?

Cost (if possible to determine) £314,556 p.a. (gross figure covering day care and assessment beds)

available staff (if known)

Miles Plating Day Centre – brief description

Day care for older people with mental health issues, social inclusion, activities, care provision, transport and lunch included

Day care for older people, social inclusion, activities, care provision, transport and lunch included

Provided by Age Concern Manchester, jointly funded by MCC & NHS

Age Concern Manchester, jointly funded by MCC & NHS

Number of services users 79 service users of which 39 with diagnosed dementia, 11 with possible dementia, 15 with depression, 9 with other mental health issues

86 service users of which 45 have dementia

Average entitlement (in hours) 9.30am – 3pm 9.30am – 3pm

Number of referrals in last 3 months 11 20

Is there a waiting list no no

Cost The total value of Age Concern contracts with Manchester City Council is £404,862 pa.

Available staff 10 staff in total; 5 support workers, 2 senior support worker, Admin Assistant; Day centre assistant manager, Care services manager

10 staff in total; 5 support workers, 2senior support worker, Admin Assistant; Day centre assistant manager, Care services manager

Gorton Day Centre – brief description Day care for older people with mental health issues, social inclusion, activities, care provision, transport and lunch included

Day care for older people, social inclusion, activities, care provision, transport and lunch included

Provided by Age Concern Manchester, jointly funded by MCC & NHS

Age Concern Manchester, jointly funded by MCC & NHS

Number of services users 54 service users of which 17 with diagnosed dementia, 7 with possible dementia, 8 with depression,

Average entitlement (in hours) 9.30am – 3pm 9.30am – 3pm

Number of referrals in last 3 months

Is there a waiting list no no

Cost The total value of Age Concern contracts with Manchester City Council is £404,862 pa.

Available staff

Crossacres Day Centre – brief description Day care for older people, social inclusion, activities, care provision, transport and lunch included Not specifically for people with dementia or mental health issues

Day care for older people, social inclusion, activities, care provision, transport and lunch included Not specifically for people with dementia

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Provided by Age Concern Manchester Age Concern Manchester

Number of services users 79 service users of which 52 have dementia 70 service users of which 43 have dementia

Average entitlement (in hours) 9.30am – 3pm 9.30am – 3pm

Number of referrals in last 3 months 10 13

Is there a waiting list? no no

Cost £20.60 per day if funded £20 per day private cost £20.60 per day if funded £20 per day private cost

Available staff 7 staff in total; 4 support workers, 1 senior support worker, day centre manager, care services manager

7 staff in total; 4 support workers, 1 senior support worker, day centre manager, care services manager

Assessment/Respite Beds Hall Lane – brief description of the service 10 available beds, solely for assessment purposes not respite

Provided by Manchester City Council

Number of active cases/ service users 247 for all of 2011/12

Average length of stay (in days) 11.5

Number of referrals in last three months 56 [NB: not sure which period this relates to]

Is there a waiting list? No

Cost (if possible to determine) £314,556 p.a. (gross figure covering day care and assessment beds)

available staff (if known) 9 fulltime, 4 jobshare, 9 apprentices

Care Concepts – brief description of the service

10 beds for respite and assessment, sometimes used by NHS who reimburse costs to MCC, nearly always occupied

Provided by Manchester City Council

Number of active cases/ service users

Average length of stay (in days)

Number of referrals in last three months

Is there a waiting list?

Cost (if possible to determine)

available staff (if known)

Admiral Nurses

Provided by MMHSCT MMHSCT

Brief description of the service 3 nurses across the City. One nurse in each locality, north, central, south. Admiral Nurses provide support to family carers of people with dementia. Support is either on a one to one basis at home or in a variety of groups which deliver education and emotional support to help people

As previous

59

with dementia and family carers understand the illness and cope better. The nurses also support people through dementia café drop ins , which are aimed at providing people with peer support, advice from the nurse and reduce social isolation.

Number of active cases/ service users 290 320

Number of referrals in last three months 104 75

Is there a waiting list? (If yes, how many people are on it and what is the average waiting time?)

Yes, in south Manchester, waiting time approx 8 – 10 weeks.

As previous

Cost (if possible to determine) £189,000 As previous

available staff (if known)

Team Manager 1.00 Qualified Nurses 2.00 Admin & Clerical 0.54

Team Manager 1.00 Qualified Nurses 2.00 Admin & Clerical 0.53

Inpatient Beds Provided by MMHSCT

North Cedar Ward Provides assessment, treatment and care for older

people with organic and functional mental illness. Provides assessment, treatment and care for older people with organic and functional mental illness.

Number of available beds

Number of occupied beds

Average monthly occupancy rate for people with dementia

Is there a waiting list?

Number of referrals in last three months

Cost (if possible to determine)

available staff (if known)

Ward Manager 1.00 Qualified Nurses 11.76 Unqualified Nurses 18.24 Occupational Therapy 2.00 Admin & Clerical 1.00

Ward Manager 0.00 Qualified Nurses 12.31 Unqualified Nurses 17.24 Occupational Therapy 2.00 Admin & Clerical 1.00

Maple Ward Provides assessment, treatment and care for older people with organic and functional mental illness.

Provides assessment, treatment and care for older people with organic and functional mental illness.

Number of available beds

60

Number of occupied beds

Average monthly occupancy rate for people with dementia

Is there a waiting list?

Cost (if possible to determine)

available staff (if known)

Ward Manager 1.00 Qualified Nurses 12.80 Unqualified Nurses 17.20 Occupational Therapy 2.00 Admin & Clerical 1.00

Ward Manager 1.00 Qualified Nurses 11.13 Unqualified Nurses 18.60 Occupational Therapy 2.00 Admin & Clerical 1.00

Cavendish Ward Provides assessment, treatment and care for older people with organic and functional mental illness.

Provides assessment, treatment and care for older people with organic and functional mental illness.

Number of available beds 20

Number of occupied beds 20

Average monthly occupancy rate for people with dementia

Approx’ 70%

Is there a waiting list? (If yes, how many people are on it and what is the average waiting time?)

No… beds used as required (or patients admitted to one of our sister wards – October or Cedar.

Number of referrals in last three months Admissions = 9

Cost (if possible to determine) ?

available staff (if known)

Ward Manager 1.00 Qualified Nurses 12.38 Unqualified Nurses 18.72 Occupational Therapy 1.00

Ward Manager 1.00 Qualified Nurses 12.38 Unqualified Nurses 17.66 Occupational Therapy 1.00

Age Concern Holmfield – brief description of the service

Residential care for up to 27 people provided at our residential home in Didsbury, Manchester

Residential care for up to 27 people provided at our residential home in Didsbury, Manchester

Provided by Age Concern Manchester Age Concern Manchester

Number of active cases/ service users 27 26

Average length of stay 1.2 years 1.2 yrs

Number of referrals in last three months 1 6

Is there a waiting list? No No

Cost (if possible to determine) 435.00 per week £435.00 per week

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Appendix 6: Additional Dementia Mapping

Organisation Service or Project

Contact Description Specialised (yes/no)

Locality covered

Making Space Monet Lodge Andy Devares 0161 438 1750 Andy.Devares@makingspace.co.uk

Monet Lodge is a 20 bedded independent hospital for people with dementia and challenging behaviour funded entirely by Manchester NHS (Continuing Health Care).

yes City-wide

People First Housing

Dementia Support Service

People First Dementia Support at People First Housing on 0161 235 6900

Free support available to people aged 55 plus living in Manchester who are exhibiting signs of dementia, memory loss or confusion. The service provides support in a range of areas including prompting upkeep and management of the home, claiming benefits, access to care and other local services and assistance with medical appointments.

yes City-wide

Shore Green Irwell Valley Housing Association

Sophie Elkin 0161 437 9720 sophie.elkin@irwellvalleyha.co.uk

Shore Green is a specialist housing unit for people diagnosed with memory loss. We offer 10 specially designed self-contained flats, with an on-site housing support team and a 24 hour care team.

yes City-wide

CiC Group Eachstep Michelle Philips 0161 7956 641

Eachstep in Blackley is a new centre which offers residential, day, home and respite care. By providing a holistic package of support we are able to support people with dementia each step of the way both in their own homes and in the specialist centre. The home care service is available across Greater Manchester for people who have dementia and provides services such as personal care, domestic and social support. Day care services include a large space which can accommodate 25 people at a time, and provide the opportunity to socialise with others as well as taking part in a number of activities. This is available 8:30am – 6pm. Residential and nursing care services provide 12 beds with a specialist team who promote independence, safety and wellbeing. Residential and nursing patients also have access to a range of other facilities such as hair salon, gym and library. The respite service has 12 places available for short term stays, which allows for carers to take a break or to help the patient recover

yes North Manchester & City-wide

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from illness or injury.

CareConcepts n/a Lyndsay Boulton 0161 437 3337 lyndsay@careconcepts.co.uk

CareConcepts provide an outreach team delivering care in the community, a daycare centre, respite & assessment unit, residential unit and long term nursing care.

yes South Manchester

Manchester Carers Forum

Dementia Care Support Services

Jackie Moran0161 819 2226

Support for Carers of people with dementia. The Forum works with a group of volunteers who have direct experience and understanding of caring for someone with dementia, and who offer support to Carers of people with dementia.

yes City-wide

Central Manchester Foundation NHS Trust

Dementia Steering Group

Nicola Johnson 0161 901 7167 Nicola.Johnson@cmft.nhs.uk

The group has developed from the General Hospital Care group that the Manchester Older Peoples Network (from MACC) has worked with since 2005. The purpose of the group is to improve and develop care, raise standards and services provided to patients in the hospital with dementia. There is a Dementia Committee in the Trust and the Steering group supports the Committee in delivering the Dementia Strategy by improving standards of care. The Steering group is a working group which develops, co-ordinates and implements programmes of work in the hospital to improve standards of care and deliver effective patient pathways. The group membership includes the Consultant Physician for Care of the Elderly, the Head of Nursing, the Dementia Project Nurse, and representatives from Adult Community Services, the Safeguarding team, the Mental Health Unit, the Patient Partnership Team and other staff members of the hospital. The lay representative is supported by MACC and is a member of the Manchester LINk

yes Central Manchester

Manchester Public Health

Improving the physical health of people with dementia and their carers

Douglas Inchbold, Public Health Development Manager on 0161 861 2543 or Alpa Raja, Public Health Development Advisor on 0161 861 2545

The Dementia Programme began in 2009 and aims to reduce health inequalities by improving service users (those with dementia and their carers) physical health and wellbeing. The Programme has strategic links to existing health improvement initiatives in the City to ensure and encourage that the needs of this population group are considered in all aspects of public health strategy. The Programme links to practical schemes that deliver health improvement to ensure appropriate inclusion of the needs of people

yes North Manchester

63

living with dementia in the community. Examples would be activity schemes, healthy eating schemes, exercise sessions, nutrition services, smoking cessation services etc. The Project offers Health Checks to people with dementia and their carers. Raising awareness of the ‘health’ needs of this population is an important part of the programme of work. The Programme is managed by Public Health Development and the Manchester Mental Health and Social Care Trust and is supported by a multi-agency advisory group.

Pennine Acute NHS Foundation Trust

Angela Wood0161 604 5880angela.wood@pat.nhs.uk

Pennine Acute Hospitals is on the Greater Manchester Steering Group chaired by NHSGM, and sits on the steering group of AQUA’s Dementia Improvement Community working closely with them to implement best practice. We have a Trust steering group, made up of clinicians and managers from all sites, and have just agreed a dementia strategy. Also, dementia specific training has commenced across the Trust, and feedback has been positive.

yes North Manchester

University Hospitals of South Manchester NHS Foundation Trust

Julie Todd 0161 291 2029 julie.todd@uhsm.nhs.uk

At UHSM we are currently looking at national requirements and scoping where we are now in order to identify key priorities and next steps. There is an Operational Board in place that reports into a Strategy Group. The Deputy Chief Nurse chairs the Operational Group in partnership with our lead clinicians who have a special interest in dementia. The Dementia Agenda forms a key part of the Adult Safeguarding agenda and a Dementia Workshop is planned for the end of September where an ‘expert’ has been invited to talk. All the above support the CQUIN agenda.

yes South Manchester

University Hospitals of South Manchester NHS Foundation Trust

Nursing Home Team

Debra Gosling 0161 946 8258/8259 debra.gosling@uhsm.nhs.uk

The nursing home service in south Manchester has a dual role. It proactively reviews all registered nursing home residents in the 9 nursing homes in south Manchester. These reviews are planned in advance and include holistic reviews including medication, diagnoses, care planning. They also involve families in discussion around anticipatory care planning. The team attempts to either prevent hospital admission or reduce bed days. The team liaises closely with other health care professional and social services to ensure all residents are signposted to appropriate service. The work also has a reactive element during Monday to Friday working hours. All urgent visit requests are telephoned to the administrative staff and are booked in for urgent visits on the same

no South Manchester

64

day.

Social & Support Groups

Organisation Service or Project

Contact Description Specialised (yes/no)

Locality covered

The Alzheimer's Society

n/a Sue Clarke0161 342 0797sue.clarke@alzheimers.org.uk

The Manchester branch offers a Befriending Service to people being discharged from hospital, a Dementia Support Service, a Carers Information and Support Programme, and general information and support. In addition the team organises Carers Support Group meeting in South Manchester.

yes City-wide

Manchester Mental Health and Social Care Trust

Admiral Nurse Dementia Cafes

Susan Ashcroft-Simpson 07811 349 328 sue.ashcroft-simpson@mhsc.nhs.uk

The Admiral Nurses organise and support a number of Dementia Cafes across the City such as the Central Manchester Alz Fresco Café, The North Manchester Alz Café, the Hearts, Minds & Voices Social Club, the Didsbury Memories Café, and the Wythenshawe POPPin Cafe. The cafes are sociable meeting places for people with dementia and their family and friends.

yes City-wide

The Alzheimer's Society & Debdale Eco Centre

The Growing Club

Sally Ferris 0161 342 0797 sally.ferris@alzheimers.org.uk

It’s an informal group made up of people who are already interested in growing things or who would like to learn and have a go. You can do as much or as little as you feel able and there will be plenty of time to chat and enjoy each other’s company. All equipment is provided and help is at hand if needed. The Club is run by Debdale Eco Centre and supported by the Alzheimer’s Society Dementia Support Worker

yes City-wide

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Library Theatre Storybox Project

Lowri Evans 0161 200 1558 lowri@librarytheatre.com

The Storybox Project is a creative storytelling project for older people with dementia and Alzheimer's, run by Library Theatre and funded by Paul Hamlyn Foundation for the next three years. It is our aim to work with older people all over Manchester in a variety of settings, from all backgrounds with a range of needs.

yes City-wide

n/a Melody Memories

Rev Bob Day 0161 428 7001

Melody Memories is a friendly chat and singing group with pianist, enjoying songs and memories from years ago taking place 2-4pm at The Amani Centre, Moss Lane West,M16 7DG on every 2nd monday of the month

yes Central Manchester

The Fed & Making Space, Bury

Dementia Café

Alison Lightfoot 0161 772 4800 alison.l@thefed.org.uk

THE FED (Federation of Jewish Services) and Making Space, Bury, have launched a Dementia Cafe at the community centre at HEATHLANDS VILLAGE in Prestwich. The cafe welcomes anyone who has dementia, as well as family members or friends. It is open to the Jewish and wider community and we provide an opportunity for friendly, mutual support. We meet on the last Thursday of the month, 2.00pm - 4.00 pm.

yes North Manchester

Luncheon Clubs

Organisation Service or Project

Contact Description Specialised (yes/no)

Locality covered

n/a Haven of Peace Luncheon Club

0161 224 3576 African-Caribbean meals service available Tuesdays. Vegetarian and Fish diets catered for. Other diets on request. Days and times: Tuesdays 12.30 - 1.30 pm. Cost: £2.70

no Central & South Manchester

n/a Egerton Court Luncheon Club

Kathleen Duxbury 0161 881 0895 kathleen.duxbury@harvesthousing.org.uk

Anyone over 55 and resident in Manchester can go to a luncheon club. It's a good way to get out of the house and spend time with other people having a chat and something good to eat. Days and times: Monday - Friday 12 noon - 1:15 pm. Cost: £2.70 for a meal, including dessert and a drink

no Central Manchester

66

n/a St Paul's Church Luncheon Club

no info Anyone over 55 and resident in Manchester can go to a luncheon club. It's a good way to get out of the house and spend time with other people having a chat and something good to eat. Days and times: Monday - Friday 12 noon - 1:15 pm. Cost: £2.70 for a meal, including dessert and a drink

no North Manchester

n/a Victoria Square Luncheon Club

0161 236 5298 Anyone over 55 and resident in Manchester can go to a luncheon club. It's a good way to get out of the house and spend time with other people having a chat and something good to eat. Days and times: Monday - Friday 12 noon - 1:15 pm. Cost: £2.70 for a meal, including dessert and a drink

no North Manchester

n/a Crumpsall Green Luncheon Club

no info Anyone over 55 and resident in Manchester can go to a luncheon club. It's a good way to get out of the house and spend time with other people having a chat and something good to eat. Days and times: Monday - Friday 12 noon - 1:15 pm. Cost: £2.70 for a meal, including dessert and a drink

no North Manchester

n/a Northolt Court Luncheon Club

0161 223 7048 Anyone over 55 and resident in Manchester can go to a luncheon club. It's a good way to get out of the house and spend time with other people having a chat and something good to eat. Days and times: Monday - Friday 12 noon - 1:15 pm. Cost: £2.70 for a meal, including dessert and a drink

no North Manchester

n/a Hall Lane Luncheon Club

Teresa Grogan0161 945 7609

Anyone over 55 and resident in Manchester can go to a luncheon club. It's a good way to get out of the house and spend time with other people having a chat and something good to eat. Days and times: Monday - Friday 12 noon - 1:15 pm. Cost: £2.70 for a meal, including dessert and a drink

no South Manchester

67

n/a Alfred Morris Court Luncheon Club

0161 902 0865 Anyone over 55 and resident in Manchester can go to a luncheon club. It's a good way to get out of the house and spend time with other people having a chat and something good to eat. Days and times: Monday - Friday 12 noon - 1:15 pm. Cost: £2.70 for a meal, including dessert and a drink

no South Manchester

Food Providers

Organisation Service or Project

Contact Description Specialised (yes/no)

Locality covered

Flow Food n/a 0161 330 0411 sales@flowfood.co.uk

Provision and delivery of frozen meals to customers in their own home. Meals can also be delivered to care homes, luncheon clubs, day care centres in multi portion format. Flow Food offer a wide range of European, vegetarian, ethnic, main courses and desserts and food which caters to religious observance and other dietary needs. Deliveries are made on Wednesdays to the Manchester area.

no City-wide

Wiltshire Farm Foods

n/a 0800 146 330Manchester@wiltshirefarmfoods.co.uk

Wiltshire Farm Foods offer tasty, wholesome frozen meals and desserts, brimming with traditional flavours, delivered to your door (or kitchen!) by our caring, friendly and dependable delivery drivers. There's plenty in our range to suit all tastes and pockets, and they can all be easily heated in a oven or microwave at a time to suit you. Wiltshire Farm Foods prides itself on its personal and reliable service. Our customers are our top priority and we appreciate those things that are most important to you. Our reputation is based on three principles - Care, Trust and Quality. From the moment you place an order on our advanced and easy-to-use website , receive a delivery from our helpful drivers or tuck into a piping hot dinner you'll wonder how you ever did without us! At Wiltshire Farm Foods we pride ourselves on delivering a service you can trust, not just fantastic food. Once you place your order you'll receive an email confirming your delivery date. All our delivery drivers are carefully selected so you can have a regular, friendly face you can rely on.

no City-wide

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Homecare Providers

Organisation Service or Project

Contact Description Specialised (yes/no)

Locality covered

Age Concern Homecare (Central)

Pam Capper 0161 223 6062 pam.capper@silverservice.org.uk

Home Care service offered primarily to older people, this includes all aspects of personal care , sitting services to provide respite for regular carers,companionship, laundry and domestic help. We are also able to provide services to younger adults with long term medical conditions or learning disabilities. Our services are provided in a flexible way that promotes independence and choice for the individual.

no Central Manchester

Age Concern Homecare (North)

Pam Bryan 0161 205 3851 pam.bryan@silverservice.org.uk

Home Care service offered primarily to older people, this includes all aspects of personal care , sitting services to provide respite for regular carers,companionship, laundry and domestic help. We are also able to provide services to younger adults with long term medical conditions or learning disabilities. Our services are provided in a flexible way that promotes independence and choice for the individual.

no North Manchester

Age Concern Homecare (South)

Gillian Barton 0161 437 0717 gillian.barton@silverservice.org.uk

Home Care service offered primarily to older people, this includes all aspects of personal care , sitting services to provide respite for regular carers,companionship, laundry and domestic help. We are also able to provide services to younger adults with long term medical conditions or learning disabilities. Our services are provided in a flexible way that promotes independence and choice for the individual.

no South Manchester

69

Apex Nursing & Care Services

n/a 0845 600 3041 info@apexhealthandsocialcare.co.uk

Apex Nursing & Care Services Ltd provides Nursing, Care and Support staff to a wide range of client bases, including hospitals, nursing and residential homes, and to people in their own home with a variety of needs. Apex operates a genuine 24 hour call centre, and coupled with our large available pool of staff, enable us to react quickly to short-notice and emergency care requests. When you make contact with us, we will assess your requirements, and meet them accordingly - we have a track record in setting up unique care packages, perfectly tailored to service users' needs. For Care Leavers and young people at risk of offending or re-offending, People with alcohol problems, People with mental health problems, People with physical disabilities, People with sensory disabilities, Refugees and asylum seekers, Drug users, People with dementia, Lesbians, gay men, bisexuals and transgendered people, Women, Men, People with learning disabilities, Carers, People with a long-term health condition, Offenders and ex-offenders, Older people

no City-wide

Chrysalis Homecare

n/a Jayne Hanson 0161 835 3588 Jayne.Hanson@ChrysaliscommunityCare.co.uk

Providers of home care services to adults in their homes. For people with alcohol problems, People with mental health problems, People with physical disabilities, People with sensory disabilities, Drug users, People with dementia, People with learning disabilities, Carers, People with a long-term health condition, Older people

no Central & North Manchester

Harbex Nursing Care

n/a 0161 764 7711 info@harbexnursing.co.uk

Pro-active provider of nursing care and support services including home care, to both the private and public health sector within Manchester, Trafford and Stockport. For people with physical disabilities, People with dementia, People with learning disabilities, Older people.

no City-wide

Homecare Support n/a Ann-Marie McIntyre 0161 942 9496 dan.masters@homecaresupport.co.uk

Providers of homecare. People this is for: People with physical disabilities, People with sensory disabilities, People with dementia, People with a long-term health condition, Older people

no South Manchester

70

Inspirit Care n/a Joanne Warren 0161 947 2700 joanne.warren@inspiritcare.co.uk

Manchester Care was set up in 1991 as a not-for profit organisation and registered charity. This means that all of the money we receive in payment is put back into the company to improve services. We deliver Home Care services and manage care homes within the Manchester area. In addition to long term care we also provide short-term care, day care, respite care, tailored intermediate care and help within supported housing schemes. Over the years we have built up a reputation for responding to peoples individual needs. Manchester Care are recognised as a leading provider of social care and are committed to providing the highest quality care and support.

no City-wide

Manchester Asian Care

n/a Nusret Ahmed 0161 241 5150 nusret.ahmed@fast-uk.org

Manchester Asian Care Limited (MAC) is a not for profit community organisation that provides a comprehensive range of culturally appropriate domiciliary care support (including personal care) services specifically (but not exclusively) for Asian people in Manchester. The organisation's aim is to deliver a new model of domiciliary care based on a framework which focuses on key areas that most affect the quality of life of individuals, in order to give more control, independence and choice to Service Users. The company prides itself on an ability to provide services that are flexible, comprehensive and reflective of the cultural, linguistic and religious needs of our service users. MAC aims to provide home support services to people of all ages and disabilities, who for a variety of reasons are unable to adequately care for themselves and their homes. For people with mild mental health problems, moderate mental health problems, physical disabilities and people with dementia. Languages: Urdu and Punjabi

no City-wide

71

North Domestic Care

n/a 0161 688 5888 07534 141 632 northdomesticcare@hotmail.co.uk

The complete home help service with friendly and caring staff who endeavor to accommodate all of your domestic needs, companionship, cooking, cleaning, shopping, laundry, spring cleans, house moves and much more. For People with physical disabilities, People with sensory disabilities, People with dementia, People with learning disabilities, People with a long-term health condition, Older people

no North Manchester

Royal Mencap Manchester Home and Community Support Service

Lyndsey Hanson 01706 714540 0808 808 1111 manchester.referral@mencap.org.uk

Home Care and Community Support Services for people with a Learning disability, mental health issue or dementia living in North and South Manchester. The service will assist people that have been assessed as having a learning disability, mental health need or dementia and live in their own home and meet the Fair Access to Care (FACs) criteria.

no North & South Manchester

Care Homes

Organisation Service or Project

Contact Description Specialised (yes/no)

Locality covered

Avery Healthcare Acacia Lodge

Anne Gardner 0161 688 1890 acacialodge@averyhealthcare.co.uk

Residential and dementia care home yes City-wide

Equilibrium Healthcare

Moston Grange

0161 219 1300 admin@mg.equilibriumhealthcare.co.uk

Care home with nursing. Care type and number of places: Dementia (63 places), dementia - over 65 years of age (1 place), People with dementia

yes no info

Chataway Nursing Home

n/a Penny Maughan 0161 205 5546 chatawaycare@btconnect.com

Here at Chataway Nursing Home we accommodate 26 residents with a variety of mental health issues and, subsequent support needs. Our age range is diverse with residents aged from early 30's up to 80 years of age. Clearly, we are acutely aware that our pastoral approach to supporting a programme of activities to those residents affected by dementia may be limited. We currently have 2 residents affected.

no North Manchester

72

The Seymore n/a 0161 220 8688 theseymourhome@yahoo.co.uk

Residential care home. Care type and number of places: Dementia (8 places) Old age, not falling within any other category (18 places), People with dementia, Older people

no North Manchester

Reachout Care Court

n/a Jacqueline Gallagher 0161 795 0317

Care home wth nursing. Day Care provision is also available. Care type and number of places: People with dementia, Older people, Old age, not falling within any other category (32 places)

no North Manchester

Victoria Nursing Home

n/a 0161 224 0302 victorianursing@btconnect.com

Care home with nursing. Care type and number of places: Dementia (21 places), mental health, excluding learning disability or dementia (21 places) Total capacity - 21 places, People with mental health problems, People with dementia

no no info

Bupa Ringway Mews Nursing Home

0161 491 4887 maginns@bupa.com

Care home with nursing. People with dementia, Older people, Care type and number of places: Dementia - over 65 years of age (30 places), old age, not falling within any other category (120 places) Total capacity 150 places

no no info

Bupa Gorton Parks Nursing Home

0161 220 9243 reevesm@bupa.com

Care home with nursing. Care type and number of places: Dementia - over 65 years of age (90 places) old age, not falling within any other category (43 places), physical disability (15 places), People with physical disabilities, People with dementia, Older people

no no info

Nada Residential and Nursing Home

n/a Tanya Grenade

0161 720 7728 nadanursinghome@yahoo

.co.uk

Care home with nursing. Care type and number of places: Dementia - over 65 years of age, mental health, excluding learning disability or dementia - over 65 years of age Total capacity - 28 places, People with mental health problems, People with dementia, Older people

no no info

Conifers Nursing Home

n/a 0161 881 2514 Care home with nursing. Care type and number of places: Dementia (5 places) old age, not falling within any other category (21 places), People with dementia, Older people

no no info