campaign report 2016 - hafal
TRANSCRIPT
CAMPAIGN REPORT
2016
The BIG Carers’ Tea Break Campaign Report
Contents:
Page 1: About the Campaign
Pages 2 – 4: Local Campaign events
Page 5: Feedback from Carers
Page 6: Key Messages from the Campaign
Page 7: Campaign Recommendations
Page 8: Research
Appendix 1: Top priorities identified by Carers
Appendix 2: Nature and Characteristics of living with
a serious mental illness
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The BIG Carers’ Tea Break 2016
About the Campaign Between May and October 2016 the BIG Carers’ Tea Break campaign reached over 20,000 people across Wales, and saw carers of people with mental illness in each of the 22 counties meet up, enjoy afternoon tea, have a chat and provide mutual support to each other.
Hafal along with partners Carers Wales, Crossroads Mid and West Wales, Bipolar UK and Diverse Cymru supported this national campaign where over 1,000 carers also had the opportunity to sample well‐being and pamper activities and receive advice and support on a range of issues including carers’ assessments and the new Social Services and Wellbeing Act.
The campaign had 4 immediate aims:
1. To ensure that the collective voice of carers is heard, and that carers have their say at a local and national level on how mental health services are planned and delivered. Carers, alongside the people they provide care for, are leading experts on what is needed locally and nationally in terms of mental health and related services.
2. To help carers become more empowered so they can play a full part in planning the care and
treatment of the person they care for. Carers know the person they care for better than anyone else, and so it is important that they are directly involved in the planning and delivery of support and services.
3. To better inform carers across Wales by providing a range of information and advice on
benefits, treatments and local services. Carers are experts in caring by experience, and can be most effective when having essential knowledge of those issues that affect the person they care for, and themselves.
4. To highlight the need for carers to be receiving good quality carers’ assessments under the new Social Services and Well‐being Act (and for these assessments to make a real difference), and to provide advice and support to carers about their rights under the legislation.
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The Campaign Launch
The campaign was officially launched on 12 May 2016 at the Millennium Centre in Cardiff by Albert Heaney, the Welsh Government’s Director, Social Services and Integration, and supported by a host of AMs.
Watch the Hafal TV report from our campaign launch event: https://youtu.be/m1lr5lgN-NU
Highlights of the 22 local campaign events
In May there was plenty of singing, pampering and relaxation sessions and local Mayors attending the tea breaks in Neath Port Talbot, Carmarthenshire and Pembrokeshire.
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June saw the campaign move to Ceredigion, and then head north to Anglesey, Flintshire and Conwy – with plenty of continued support from MPs.
A very busy July saw plenty of music, arts and crafts, and continued support from Assembly
Members as it moved to Gwynedd, Denbighshire and Wrexham, before traveling on to the Royal Welsh Show in Powys and then heading south to the Vale of Glamorgan.
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In August the campaign moved to Gwent, with local events held in Monmouthshire, Newport, Blaenau Gwent and Caerphilly, and in September moved to Swansea, Bridgend, Merthyr, RCT and Torfaen. Still plenty of tea to drink and cakes to eat!
The final local campaign event was held in Cardiff on 7 October, and saw a local bake‐off between Kevin Brennan MP and Mark Drakeford AM.
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Feedback from carers
It’s been a great campaign! Here is just a sample of some of the feedback we received from carers attending the events:
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Key messages from the campaign
Carers have consistently told us that they need to have better information on particular types of mental illness, and to have further learning opportunities to develop skills for dealing with a persons’ symptoms and not just to be contacted when a crisis develops
Carers also say they need more information on what services are available in their local area and who they can contact and where to go in an emergency or crisis situation
Carers have told us that they feel they are excluded or ignored by health and social care professionals from the care and treatment provided to their loved one. This is the case for care and treatment services delivered to people within the community and also in hospital where carers say they are not involved enough, particularly when the person cared for is going to be discharged
Carers also tell us that they are not given sufficient information regarding the care and treatment of their loved one, with professionals frequently citing ‘confidentiality’ as the reason. This can make matters worse, preventing carers from understanding and learning important information about the challenges that both they and the person they are caring for face and how best to deal with it
Carers have spoken about the unacceptable standard of inpatient services. Ward environments are frequently experienced as frightening places, and carers feel there is very little happening in hospitals to help aid recovery and meet people’s basic needs
Carers say that as a result of ignoring their concerns the person they care for often deteriorates to an extent that they are in need of a crisis service or are sectioned/admitted to hospital
Carers tell us that their number one priority is the well‐being of the person they care for. However, we have found that this can often be to the detriment of a carers own health and well‐being. Some of the things that carers say would help them include:
More breaks (‘respite’)
Access to psychological therapies for both themselves, the person they care for and for more family type therapy
Better transport facilities to be able to access support services
More help and support to access welfare benefits and information on welfare rights
Many carers have told us that they are unaware of their right to have a carers’ needs assessment. Despite providing unpaid care many people say they do not identify themselves as ‘carers’, and many people are put off by the term ‘assessment’.
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Recommendations
1. Recognise the value of carers and listen to what they say
Each Health Board and local authority should jointly establish a protocol for how health and social care professionals will engage with carers, how they will ensure carers are listened to and their views valued, and how they will ensure carers are as appropriately involved as possible in their loved ones care. These protocols should be included in strategic plans, especially Health Boards’ Integrated Medium Term Plans
2. Employ a Carers Champion in every Health Board in Wales
Each Health Board should deploy mental health ‘Carers Champions’, and consider deploying these posts through the third sector. These posts should provide a direct link between carers, mental health carer groups and health and social care professionals, and help with the provision of specialist information, advice and assistance to carers relating to mental health issues, legislation, where to get further support, etc.
3. Use Care and Treatment Plans to identify carers who may need support
Care coordinators should use the development of Care and Treatment Plans for people using secondary mental health services to identify carers who may be in need of support, in order to assist each local authority meet its duty (under the Social Services and Wellbeing (Wales) Act 2014) to offer assessments to all carers who appear to the authority and who may have needs for support.
4. Make better use of carers assessments
Local authorities should ensure that carers’ assessments, where appropriate, include the need to provide support to help a carer engage and become more involved and informed about their loved ones care. As well as directly addressing a carers health and social care needs, carers’ assessments could also include training, awareness raising, confidence building, etc. as well as information and guidance on how to access financial support and free independent legal advice/independent advocacy, etc.
5. Promote and use advance statements
Health Boards and local authorities should jointly promote the use and benefits of using advance statements or advance directives, where appropriate, for when people with mental health problems become unwell to help clarify the role of a carer, or carers, for if they become unwell. The use of advance directives and advance statements may often be appropriate for safeguarding and promoting the wishes, feelings, interests and health of a loved one. They are likely to have a significant place in the care and treatment of people who fall under the Mental Health Act.
6. Ensure better access to a range of services
Health Boards and local authorities should work together to jointly ensure that carers have access to interventions or services that are relevant to them such as a range of psychological therapies , respite, carer support groups or independent advocacy
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Research Prior to the campaign, Hafal conducted some research to establish the top priorities for carers of people with mental illness. This involved a group of over 30 carers from across Wales spending a day discussing what was important to them, and us listening to their concerns as well as their hopes and aspirations for the future.
During the campaign we conducted a survey (using Survey Monkey) to get the thoughts and views of carers who were not able to attend any of the local campaign events. We have also received extensive feedback during the campaign from staff across Wales who work on a day to day basis with carers. The priorities identified through this research are shown in Appendix 1.
Discussion Paper A discussion paper called: ‘Caring for Mental Health in Wales: Supporting Carers of People with Mental Illness’ was developed and widely circulated during the campaign. The aim of the paper was to help generate discussion about the needs and challenges faced by people who care for someone with a mental illness. Some of the key issues affecting carers of people living with a serious mental illness are detailed in Appendix 2 of this report. A copy of the full discussion paper can be found at:
http://www.hafal.org/wp‐content/uploads/2016/05/Carers‐Discussion‐Paper‐1.pdf
The High Needs Collaborative The High Needs Collaborative is a longstanding alliance of third sector organisations which aim to support the recovery of people with a serious mental illness in Wales, and to support carers. By “serious mental illness” we mean people with schizophrenia, bipolar disorder, or other illnesses which require substantial support.
Traditionally this group of people has been supported by secondary mental health services but increasingly many are supported at primary care level only. The activities of the collaborative are led by people with a serious mental illness and their carers through the governance of each of the organisations and by direct engagement as activists and volunteers in specific campaigns.
Membership of the collaborative varies and in this instance the campaign was supported by Hafal, Bipolar UK, Diverse Cymru, Carers Wales and Crossroads Care Mid and West Wales. Other organisations may join the collaborative in due course.
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Appendix 2
Nature and characteristics of living with a serious mental illness
People living with a serious mental illness (such as Schizophrenia, Bipolar disorder or other type of psychotic illness) are extremely vulnerable, usually have highly complex needs and may often lead chaotic lives.
It is often the carer or the family that sees the impact this has on the person they are caring for on a daily basis, and who will spot the signs that the person may be becoming unwell and in need of early professional support, care and treatment. The symptoms experienced by a person with a serious mental illness may be episodic, which means for much of the time the person may be well.
Mental illness is the only illness whereby a person experiencing it may be detained, and receive compulsory treatment against their will (Mental Health Act 1983 as amended). This can lead to tensions within families and potential disputes and disagreements between the person with a mental illness and their carer or family.
For some people it is this perceived threat, or risk of detention/sectioning under the Mental Health Act, that leads to them behaving differently when they meet with a health and/or social care professional. It is often the carer or family that sees the person how they really are.
There is a specific stigma and discrimination associated with mental illness. This is sometimes exacerbated by the involvement of the police and/or other criminal justice agencies, displays of what other people may consider bizarre and/or threatening behaviour and sometimes there is a link to the overuse or misuse of drugs and/or alcohol.
When someone living with psychotic illness is unwell they may appear delusional, display signs of paranoia and/or experience hallucinations. The carer usually has most insight into what is happening and may at times be the focus of the delusion as the nearest person.
Often it is left solely to the carer/family to support the individual through this trying and very difficult time. There can be tensions, conflicts and feelings of guilt within families.
Specific concerns of carers of people living with a serious mental illness
What carers want most is a range of high quality and easily accessible mental health services that are widely available for the people they care for. They want to be able to better understand the mental illness of the person they are caring for, and to be supported along the way.
However, carers frequently feel excluded or ignored by health and social care professionals from the care and treatment being provided, and this is even so when a carer or family identify to professionals that the person is exhibiting relapse indicator symptoms. The result of ignoring carers’ and families concerns may see the person deteriorate to an extent that they are in need of a crisis service or are sectioned/admitted to hospital.
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Carers and families tell us that they want to have better information on particular types of mental illness, and to have further learning opportunities to develop skills for dealing with a persons’ symptoms and not just to be contacted when a crisis develops. Many carers talk about the unacceptable standard of inpatient services, and this can lead to increased feelings of guilt, burden and stress for many carers when the person they are caring for is admitted to hospital. Ward environments are frequently experienced as frightening places that do very little to help recovery and where it appears that patient’s basic needs are not being met.
Carers also often talk about how they feel they are not involved enough in the care and treatment of the person they are caring for whilst they are in hospital; again often feeling ignored and excluded. There is often a lack of discussion or communication with a carer or family when a person is going to be discharged from hospital. This includes no communication/discussion on the discharge process itself and any potential consequences or risks involving the discharge from hospital.
Often carers of people living with a serious mental illness are not given information regarding the care and treatment of their loved one with professionals frequently citing ‘confidentiality’ as the reason. This can make matters worse, preventing carers from understanding and learning important information about the challenges that both they are the person they are caring for face and how best to deal with it. The Royal College of Psychiatrists has produced a useful leaflet called, ‘Carers and
confidentiality in mental health’1 which can be found here:
http://www.rcpsych.ac.uk/healthadvice/partnersincarecampaign/carersandconfidentiality.a spx
The opening quote from the leaflet is from a member of Rethink whose son has a serious mental illness, and reflects what many carers have told us; “I need to know what you are trying to achieve for my son and how you are planning to do it. I need to understand the treatment that he is receiving so that I can play my part in his recovery programme. What I do not need to know are the personal details of what takes place between him and the professionals concerned.”
The use of advance directives and advance statements2 may often be appropriate for safeguarding and promoting the wishes, feelings, interests and health of a loved one. They are likely to have a significant place in the care and treatment of people who fall under the Mental Health Act.
1 Carers and confidentiality in mental health: Issues involved in information‐sharing: Part of the Partners in Care campaign, a joint initiative between the Royal College of Psychiatrists and The Princess Royal Trust for Carers
2 Advance directives and advance statements are documents drawn up by individuals when well to express their wishes as to their future care and medical treatment, when they may be unable to express those wishes themselves
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The need for mental health specialist support
Both people living with a serious mental illness and their carers and/or families need specialist care, support and treatment due to the nature and complexity of the illness as well as any potential legal consequences. As discussed earlier in this paper many carers of people living with a serious mental illness are a ‘nearest relative’, and as such have certain rights and powers under the Mental Health Act 1983, e.g. to be consulted, to be able to ask for an assessment, to request that their relative is discharged from hospital, to seek support from an independent advocate, etc.
It is likely that only support workers who work within mental health will develop the knowledge, expertise and have access to resources to provide effective support when complex and difficult issues relating to the carer and the person care for arise. Generic services often emphasise “signposting” to other services rather than providing comprehensive support. Specialist mental health support workers are able to devote more resources and knowledge to help resolve the issues that arise. It is particularly important to ensure that an assessment of a carers needs (carers
assessment3) is completed as early as possible to ensure information, advice, support and assistance is easily available to help prevent the deterioration in their loved one’s condition and help prevent potential admission to hospital. Frequently carers do not get in contact until a situation occurs that involves statutory mental health services. This requires an immediate response which is less likely to be available from a generic carer service because of a lack of detailed knowledge of mental health legislation and policies.
Investment in specialist mental health carer services has a long term (and sometimes short term) economic benefit to health and social services. Specialist mental health carer support services are able to provide support to carers and indirectly to the cared for which can avoid crisis management. For example, where early signs of relapse are detected, third sector staff with mental health experience/knowledge can support a carer to provide a stronger case to statutory services for early intervention that may avoid a costly in‐patient stay.
3 A carer’s assessment is a way of identifying your needs as a carer. It looks at your role as a carer: how being a carer affects you, how much caring you can realistically do (while still allowing you to be involved in other activities outside caring), and any help you may need.
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Contact the High Needs Collaborative c/o:
Hafal Unit B3 Lakeside Technology Park Phoenix Way Llansamlet Swansea SA7 9FE
Tel: 01792 816 600 Email: [email protected]