Healthwatch Stakeholders Event 6 February2015

Aims of the stakeholder event Our partners understand, support and agree to respond to our

programme for 2015/16 Stakeholders identify where Healthwatch can add value to existing

patient experience and patient engagement programmes and tangible mechanisms for impact

Healthwatch is taken seriously by the statutory sector while also being recognised as independent and community led

Outcomes Stakeholders contribute to the development of the Healthwatch

work programme for 2015/16, identify areas of joint working and build in opportunities within their own organisations to ensure impact.

Named individuals from partner organisations have agreed to work with us on projects and to identify best mechanisms for ensuring impact.

Stakeholders endorse the community intelligence gathering programme and agree to a follow up workshop in August that would review the evidence gathered by the community and develop a joint recommendations report for the CCG, JSNA and Health and Wellbeing Boards and Health Scrutiny.

Organisations have agreed to support the CIB programme either in cash or in kind through supporting the peer researchers training

Stakeholders agree to promote the Healthwatch rating system, to put the widget on their own sites and to promote the widget to their service providers

Outputs Draft work programme with activities for 2015/16 to sent to the

Board next week for comment following input from event Report from the event set out key agreement from stakeholders on

how they will work with us and respond to Healthwatch workstreams and circulated to attendees for agreement

Community Intelligence Bursary (CIB) advertised in the next two weeks

Peer researchers project to be developed with additional input from event

Workshop 1 Barts HealthFacilitators - Dianne Barham and Lindsey Williams

Current Project Idea

1

Proposed patient shadowing project involving patients filming their journey through a care pathway - a visual record of a patients experience focusing on barriers and blockages.

Display the final images in a poster format as well as animated style video. Possibly have a patient focus group and a staff focus group to reflect on the visual feedback and provide their own experience and comments on how they think things could be improved.

Key is being clear about desired impact at the outset. How will it/can it improve services/patient experience. Need to ensure good quality analyses of the results

Outcomes

Improve the clinical journey Improve patient experience and outcomes

Streamlining the service to improve waiting times or quality of care, reduce the number of appointments needed etc.,

Identify emotional barriers and blockages. Where is the tipping point where the overall experience becomes a bad one? Outcome is patients are happy, they understand what’s happening and why, they feel listened to. They have realistic expectations and those expectations are met.

Could feed into: Staff training Co-design of services Patient video to the Barts Board and the CCG Governing Body

Stakeholder Input

CCG Look at how it feeds into patient CQUIN. Ask CCG programme leads for specific areas of focus. Requires good quality analyses and consideration of how it fits into the commissioning process

Barts Needs to inform changes to services. Need to talk to CAGs and directors of nursing. Possibly look at outpatient areas and discharge. Learn from great expectations work.

Health and Wellbeing Board consider how we might develop patient measures for considering whether the system is ‘working well’ for residents.

Healthwatch Trying to identify the tipping points for patients? When does the experience become a bad experience? Where are the emotional barriers and blockages? Are they different for different members of the community?

2

Next Steps Further develop the project in light of today’s feedback with

examples Circulate project proposal to key stakeholders – Barts, CCG, LBTH Barts/CCG to review CQUIN for possible target areas Final project proposal mid March Meeting to align the needs and identify the impact

Current Project Idea

Analysis of patient feedback gathered through regular Royal London outreach sessions informs a focused Enter & View visit programme to service areas of concern

Healthwatch members felt that Barts staff were not welcoming to the Enter and View authorised members and tried to control how the visits were conducted.

Barts has different contractors for different departments so it is difficult to hold them to account e.g. Carillion.

Agreed that the Enter and View Programme might also focus on areas highlighted in the CQUIN Dashboard. Undertake more thematic visits across multiple sites and provide individual as well as thematic reports.

One suggestion was that we visit a range of wards and clinics within an 12 hour period to look at the issue of food and nutrition. Do people have access to adequate food when they need it?

We might also link the Enter and View visits to the video project to investigate key themes further.

Be clear about what we want to achieve from the Enter and View Visits.

Workshop 2 GP AccessFacilitators – Emma Cassells and Beverley Annan

Accurately understanding the issues

Do we understand the bigger picture e.g. Where access is poor, what are the issues behind that? Data we have can be anecdotal and not a true reflection of whole system.

Patient Participation Groups vary in quality- some active and some not so active, different levels of participation contribute to group effectiveness

Change of GP staff- practice managers, receptionists etc.- lack of continuity, understanding on issues at the practice

3

Varying perceptions of GP e.g. family GP- leads to lack of confidence around confidentiality for some people- affecting people going to GP

Lack of network cohesion between GPs- different operating systems may lead to one GP practice having better care than others

Lack of understanding of those with complex needs e.g. people with learning disabilities, LGBT community. People not getting the support that they need- 10 minute appointment not enough to understand, diagnose treatment.

Communication- those who can’t communicate are ignored e.g deaf, those who don’t speak English

Being registered to a GP but not in Tower Hamlets- have people been forced or is it personal choice to go elsewhere

HWTH adding value and avoiding duplication to ensure impact

Amend HWTH data collection forms to gather evidence- more scientific data from the community

Diversity data needed- help with cultural, inclusion issues- help identify where practices are failing and how they are failing

Move out of practice and into community and gather responses that way- need to get out of healthcare settings and into places people frequent often e.g post office, supermarket, launderette

Look at evolving patterns of GP registration- how has it changed in the borough? What is influencing people’s behaviours with their health. - What about those who choose not to access GPs? Those who are not registered- become bigger than not getting an appointment.

Collaborate with GP network- HWTH to participate more in the network. Find out what they are doing, what they need.

Possible data collection function of HWTH- how can HWTH get backing to do this?

Promote HWTH as a feedback vehicle Create links with voluntary/ community sector to get involved with

their discussions on access to influence commissioning. HWTH to think about messages- can we get across a diverse

message on how we can help people get their views across on access/inappropriate care? Empowering the local community.

HWTH, CCG, PPGs come together to discuss needs- work with the voluntary sector to discuss these needs. HWTH to work to broker relationships between GP, VCS and the community

Create common questions to ask on GP services- questions that can be adapted to ask diverse groups- work with voluntary sector on questions we can all ask diverse communities

How can HWTH hold people to account with findings/recommendations?

At least once, twice a year- meeting with HWTH, GP practices, NHS England and third sector- review policies on community diversity, diverse needs. Can use it to identify those practices that are failing or generate ideas to influence both successful and failing GPs.

4

Connect issues more- e.g. lack of access and overuse of A&E CCG to tell us where they need more information- can help to

broker relationship with NHS England if there is robust information- need to look at how that is collected e.g. resident survey- repeated information

Working with GPs at network level to disseminate data- find out what GPs want from the data

Work with VCSO’s on adding GP access questions to their existing questionnaires.

Actions from partners Rainbow Tower Hamlets doing research on LGBT pop- can ask if

people are registered with GP and what borough is the GP in?- send out article on HWTH and our function

CCG to help broker relationship between NHS England and HWTH- again needs more robust data

Resident surveys- working with public health on resident surveys- who owns the data though- HWTH or Public health

Follow up considerations for the Board

Ensure that we are promoting the feedback centre. Encouraging GP practices to put the Healthwatch widget on their website and have access to tablets or computer in the surgery to access information and provide feedback.

Healthwatch to attend all of the GP locality meetings over the next two months. Promote the website and the informatics function. Also to find out what they need.

As part of the Community Intelligence Gathering Bursary programme we look at how HWTH, CCG, GP Networks and PPGs could come together with the voluntary sector to discuss these needs.

Consider a common questionnaire that different VCS organisations to ask their members. Is the GP survey still being conducted.

Workshop 3 Integrated Care Facilitators –Kate Melvin

Current Project Ideas Community Health Services – develop patient outcomes through

patient interviews and focus groups Develop patient engagement group of VCS Voice organisations and

their users to support ongoing Integrated care development and changes to adult social care

Series of Enter & View visits to older peoples services with clear recommendations

5

KEY POINTS

Clearly areas of confusion and different definitions including The difference between the 'integrated care pathway' and

'integrated care' per se Also not clear what is being 'integrated'? Pathways? Services?

Health and social care? Care for particular patients eg those with long term conditions?

Key issue is working together thus reducing duplication but different sectors approach it in different ways compounding the confusion

Needs to be patient-led, defining their needs but: Commissioners stress the need of the importance of services

working together, with patients having one point of contact etc but message in the community is that it is being done to save money. Thus whether it is a patient centred service for the welfare of the patient or whether it is designed on the basis of financial/demand management is a key question. Hence need to emphasise to the commissioners that they need to live up to their promises

Patients also do not understand terms such as 'patient centred care' but do need to influence the process and make decisions. This will be become more pertinent when patients are put in the position of making decisions with personal budgets.

HW also needs to increase their profile Generally little awareness of HW in workshop. CCG representative,

for example, was not aware that HW might be able to provide community feedback re children with complex needs

Concern that website is not used sufficiently Awareness that new services (such as that offered by HW) take

some time to 'register' with GPs. CCG could help promote HW to GPs and support the notion that it is independent and patients can go to them. Also an issue about the relationship between GPs and the voluntary sector which still might need some 'work'

HW needs to reach professionals more generally as well as the community

But Remit of HW is huge and small capacity. Concern the HW is only and can only 'skim' the surface HW tends to be dealing more and more with 'complaints' since

PALS is not functioning and needs support in doing this from the community

Some discussion about the role of HW and in particular: HW needs to be represented not only on the CCG Board but also on

the Programme Boards. Issue that the community is only 'engaged' to 'inform rather than contribute to the decision making process. Thus, community engagement remains a 'whitewash'. There was an acknowledgement from the CCG that this is the case since they

6

do not 'think about' the patient voice before the service is commissioned.

It thus remains a contradiction that HW is supposed to have this great function of the patient voice but, in fact, has no real voice at all at the decision making stage. The CCG also still gives the impression that they are not interested in the 'patient voice'

The issue of 'representation' remains problematical not simply in terms of the difficulties of 'lay person' sitting on Boards but also in terms of 'who' and 'what' is being represented. Further, how are patient reps chosen? How did the patient rep at Barts get the job?

HW also needs to be feedback the work that is done in the community eg when feedback from user groups re particular services etc and to work with all their partners. Co-ordination was considered hard, given the different streams of money. HW has and should have a role in 'collating' all the information such as from PPG groups, GP surveys and possibly the GP appraisal forms. There will soon be weekly data made public from the Friends and Family Test

HW should also have access from information (eg both quantitative and qualitative data) stored in Public Health

Key issue., too, is that HW should be wary of duplicating information and should perhaps have a role in elucidating the often quantitative feedback from the above

Qualitative work (eg by Barts) seen as very positive but it remained a point of emphasis that there should be a variety of methodological tools used. Also need different people with different experiences involved in seeking out information. It was also emphasised that since many people/patients don't use/attend 'groups', then HW should stretch beyond this resource

Key role for HW was to 'fill' the gaps in knowledge Key is that HW may need to be more proactive rather than reacting

to information and particularly in terms of being involved in the decision making processes as noted above

Patient voice is needed at all stages of the process - Needs assessments Supporting and informing patients Evaluating and monitoring - measuring impact and reporting back

to patients was seen to be crucial Assessment of impact But key is to set up the steps whereby HW can be 'taken seriously'.

What are these steps?

More specifically:

Understanding of and support for patients who will have personal budgets. It is unclear whether they know where to go for help or whether they know what help is there. They will also need to know what services are available more generally. If, for example, people are only asking for the 'minimum', the programme may look successful but actually it may be they did not know about any other options and so on.

7

Should undertake more Enter and View visits Feeding into commissioning services such as children with complex

needs HW also needs to play a role in 'empowering' patients and

educating to take greater control over their own health to lessen their reliance on services. It may be useful to look at the Patient Activation Measure and explore the feedback. Also need to inform patients about 'process' of care and manage their expectations

But again an emphasis that all work has to come with additional resources including costs

Workshop 4 Mental Health Facilitator – Shamsur Choudhury

Current Project Ideas Older people and mental health – better understanding of social

isolation and developing a broader community response. Co-production of services with service users and the community Physical and mental health. Emphasis on integrated care with social

workers and psychiatrists having better understanding of physical health and social isolation.

Feedback on projects ideas

Isolation and Older People:

Nicola Donnelly (LBTH Public Health) said that Public Health are in the process of commissioning a similar project Tackling loneliness and isolation in neighbourhoods for older people. She suggested that Mental Health Task Group members could possibly be involved in this project. The project seeks to activate the local community within neighbourhoods to contribute to the mental wellbeing of local older people at risk of loneliness and isolation. It will actively recruit volunteers and develop support networks, which will be able to perform outreach functions and organise groups. This will be done in conjunction with existing community links within localities.

The starting point for the development of this work will be through training volunteers in Participatory Learning and Action techniques (PLA). This will enable them to explore in their local community people’s experiences of loneliness and isolation. With support they will produce a detailed report of findings that will inform the commissioning of projects in ‘year 2’ to address loneliness in the area.

The anticipated outcomes include up-skilling of the trained volunteers, increased capacity of the community to reduce loneliness, reduced neighbourhood causes of loneliness, and therefore improved mental wellbeing.

8

Bridgette from Tower Hamlets Friends and Neighbours also mentioned that they are doing some work around isolation and loneliness in older people.

Suggested Action: Healthwatch should speak to everyone involved in today’s

discussion to find out what they are doing in regards to isolation and loneliness in older people and work with these organisations in partnership, this should avoid duplication in projects.

Nicola Donnelly to attend the next Mental Health Task Group (25th March 2015) to present project brief of Public Health funded project and get feedback from task group members.

Physical and Mental Health (emphasis on integrated care, social care and psychiatrist)

Jen Watts (Tower Hamlets CCG) mentioned that the CCG have been doing some work around integrated care for mental health service users and this will involve all providers and provisions (i.e. social workers, Psychiatrist), she will send more in-depth details of the work to Shamsur to circulate to the Mental Health Task Group.

Co-production

Providers were interested to attend the Healthwatch Mental Health Task Group co-production workshop that is taking place on the 24th February 2015, 1.30-3.30pm. They see it as a good opportunity to review how everyone should be working together.

Avoiding Duplication

Participants felt that there were a lot potential duplications in projects ideas, they mentioned that everyone needed to communicate properly (better at talking with each other) so everyone is aware of what each other are doing. Participant said the Mental Health Task Group and the Mental Health Partnership Board is a good place for communication; engagement and partnership working.

Where Healthwatch can add value Better awareness (signposting) of mental health services that local

residents can access Working together on Mental Health Awareness Week and Dementia

Awareness Week. (with CCG + Public Health) Community identifying issues (via MHTG) add value and these

issues can be raised at the Mental Health Partnership Board Being involved with CCG Mental Health priority events Enter and View programme should inform commissioners of

public/users view on services they commission (working together to identify where visits can take place) (CCG)

How can we make a difference?9

Disseminate information widely (Sharing information) Asking the right questions Meeting up with mental health commissioners to discuss priority

areas for the upcoming year (Action: Jen to organise a meeting with all CCG mental health leads and Healthwatch )

Working more closely with the Mental Health Partnership Board Community Intelligence information that is manageable, sometimes

there is too much information being circulated. Balance between qualitative and quantitative information,

Commissioners need to know if the issues are more widespread rather than individual centred (more statistical).

Avoid duplication in work Focussing on priority areas of commissioners i.e. referring back to

the 5 year Mental Health Strategy

Community Intelligence Gathering Bursary

Objectives of the Bursary programme The immediate objectives of the bursary programme are to use the

community intelligence gathered to: fill community intelligence gaps in the Joint Strategic Needs

Assessment - a document that outlines the health needs of the Borough and which is used by commissioners across health, social care, housing and children’s services to inform their commissioning plans.

identify community needs and develop solutions to feed into the CCGs commissioning intentions for 2016/17

ensure a community voice within the Health and Wellbeing Strategy refresh process

inform Healthwatch Tower Hamlets ongoing work to influence both commissioning and service improvement

identify issues that the community feels need exploring

It also provides the opportunity for stakeholders to align their core priorities for community intelligence and also to share the information and learning more strategically avoiding duplication.

The aim is to fund a range of community research projects delivered by local community and voluntary sector organisations for applications valued from £300 to £3000.

Running alongside this will be a research training programme supported by Healthwatch, CCG, LBTH Research and Public Health. Staff will work alongside successful groups and individuals to provide. advice on carrying out qualitative research projects and research design, interviewing techniques in both an individual and group context, transcription, fieldwork practicalities, analysis, report writing, ethics, Safeguarding and research governance

Questions about the process

10

Need to be clear exactly what the research support function will provide within Healthwatch

need to make sure the research is a format that is useable by the commissioners and providers. How will it help the commissioner in their decisions?

does it mean that things that are put up for commissioning are configured in a way that meet the needs of commissioners, how they perceive an issue whereas it might well be that people, individuals, families, the voluntary sector might perceive the solution in a different way?

Gaps Personalisation- what does it mean to people and how does it

influence care planning CCG need breakdown in Equalities data and what happens when

this comes to access Access to non-healthcare services- what else contributes to your

overall community wellbeing? What are the barriers to people being a part of the community

Conversations on why locals don’t know about services- Why and how do people access clinical care/community services- Bring signposting and research together Supporting community imagination to come up with ways to better

their care Gaps in knowledge on why there is no dialogue between diverse

communities on health Frontline staff lack ‘research skills’ to undertake consultation/field

work (i.e. how to carry out interviews, engaging with users to collect feedback etc)

Look into loneliness and isolation in care homes (Nicola Donnelly, LBTH Public Health)

Engaging people with ‘advanced dementia’, using ‘appropriate engaging methods/tools’ to gather their feedback/ experience (Jen Watts, THCCG Mental Health Commissioner)

Why some people DNA from using the Psychology Service (secondary care, ELFT), what are the barriers to accessing this service? And what will make people attend. (Tamsin Black, Consultant Psychologist, ELFT)

What factors stop people from changing their situation? (Tamsin Black, ELFT)

What would make people look at mental health differently (Alex Nelson, Children and Youth Forum)

What are the barriers for the community (specifically people with mental health) to accessing services such as LBTH Public Health funded projects such as My Weight, Tobacco Cessation, Health Trainers (all Healthy Lifestyle programmes) (Nicola Donnelly, LBTH Public Health)

Asking the community what is good for their mental health? And what they would like to do?

Offender mental health (gathering experiences, access issues) (Jen Watts, THCCG Mental Health Commissioner)

11

People with mental health are not getting the right support and also lacking information about services (within certain communities i.e. Bangladeshi), therefore we need to tackle signposting and access issues (Farzana Khanom, Patient Leader)

Social Prescribing needs to be part of the system (integrated) and service users should be involved in the development of the social prescribing model. (Myra Garrett)

In relation to ‘Social Prescribing’, there was a suggestion that staff at health services (such as GP’s) should talk to patients in the waiting area and talk about local services that could support them.

Personalisation- what does it mean to people and how does it influence their care planning

CCG need a breakdown of Equalities data and what happens when this affects how people are accessing care

Access to non-healthcare services- what else contributes to overall community wellbeing? What are the barriers to people being a part of the community and accessing these services?

Why locals don’t know about services- what are service providers putting out to the community

Why and how do to people access clinical care/community services- Gaps in knowledge on why there is no dialogue between diverse

communities on health Hear from the seldom heard (emerging communities) How people access information Develop patient ideas for service improvement Common issues from frontline staff (What are people being asked

and told about services) What commissioners want to know? Gaps in the JSNA Engagement in solutions Respond to commissioning aims LGBT, older people coming up with their own ideas about how to

tackle social isolation. Carers – what support do they want? Communities that are underrepresented, lost communities e.g.

Chinese, Vietnamese. However these groups sometimes are pan-London and visit Tower Hamlets to talk to VCS- look into borough wide geographical research

Balance of younger/older generation feedback 'Hard-to-reach' is an over-used word and may be 'overlooked

groups' is better.

Supporting the Research Programme

Need to be very clear to the VCS exactly what it is you are asking them to do. Brief is not clear at the moment

Be clear about how this fits with the Council's Health Outreach Workers working on the older people and isolation work? Also Health Trainers?

Voluntary sector can provide training- community research training. Social Action for Health, Tower Hamlets Volunteer Centre (Alex

12

Nelson) can provide training on Facilitation and Listening (this will cost)

Nurun can give contacts for Chinese communities CCG can help set the agenda, what needs are required ask CCG

programme leads. Can help organise resources e.g. a room for meetings, work to be carried out. Ellie

Commitment from CCG and others to listen as well as steer LBTH (Rafia) – identify what we can learn from the Patient Leaders

Programme Barts (Martin) – take back the thinking to Ian Basnett the public

health lead at Barts. Think about how it might fit into their research remit.

Help facilitate a steering group for community groups working on projects- service providers, commissioners, third sector

Foster other relationship e.g. work with QMUL- training of voluntary sector in research and it can help with validation of findings

Ensuring Impact

Need to be explicit first about what the grant is designed to do- will lead to a clearer impact.

Ensuring Commissioners and providers are involved from the outset, this will ensure buy in from all parties (Joint partnership working)

Meeting Commissioning priority areas Need for a repository of patient experience and engagement –

learning and building on what we already know. Complaints, PALS, Voiceability

Encouraging partnership working across successful organisations- looking at intersectional identity.

Being realistic about outcomes from point of initiation Information collected and presented should be a combination of

quantitative and qualitative. I.e. saying x percentage of people gave a particular viewpoint

Encourage a balance between robust data and anecdotal to back up it up.

Produce a public document (Concise, bullet points) that mentions projects and recommendations (actions for commissioners and what they will do), the aim is to hold people to account

Bring information to the Mental Health Partnership Board Help community organisations bring signposting and research

together Supporting community imagination to come up with ways to better

their care look at areas of commonality in communities but still able to look

into specific needs in diverse communities Seldom heard community groups- help them structure their work-

might be in a position where they don’t have as much support as other organisations

Identify the skills of community groups- see where there is limited capacity to carry out work. Help them improve and they can

13

structure what HWTH wants and how we want the work to be carried out.

Have a template that all community groups can use to carry out work- must be flexible to capture specific needs/issues

Breakdown of language barriers- different ways of groups communicating with each other- impact on costs of language barriers e.g. people not getting the access to care that they need, lack of interpreter services affecting healthcare access

HWTH need to be able to manage community groups expectations- recipient also has to be able to manage HWTH expectations.

Solutions or feedback has to be community based Celebrate those groups that are doing work Use participatory action research, appreciative enquiry depends on the quality of the data collected because if the CCG

find that that useful, it will have an impact but if it is something already in their knowledge, it will not have any impact

This will involve working together and the importance of different sectors working together - not replicating work and the exchange and sharing of information is important.

Need to look at short-term, medium-term and long-term impacts but, in addition, may be about outcomes and not simply impact. Something that we come to know about but not necessarily able to do anything about it. At least there will then be an awareness of it - hence potential impact

There needs to be 'buy-in' and commitment from all the relevant parties. Thus, need immediate contact between the local authority and HW to put the necessary structures in motion to facilitate this.

Any research and intelligence and information gathered should be at the CCG by the September of the preceding year before actual commissioning because of the way the commissioning cycle works in order to have an impact. And to ensure that it goes to the 'right' part of the CCG. This will mean the work must be finished by the end of August but this will need to be discussed.

Important that the information reaches the right place at the right time e.g. CCG 'programme boards' and the council. There are of course too many silos in the council.

Hopefully, too, building up the research in itself can go some way towards not just impact but more fundamentally there are some issues in the Council that they have wanted to tackle but they know they don't have the research base to do it properly and so they try and do it within the Council and that takes a long time - a good example is 'loneliness', we have individual surveys done by Tower Hamlets Homes for example, but they don't have a Tower Hamlets wide bit or research on 'loneliness' and 'isolation'. In addition, the Council waits for the research to be done and then often misses it when it has been done! Hope that in building a research capacity, it will mean things that are on the mind of the Council can be carried out.

14

Planned to undertake and evaluation of the programme to look at its 'impact', whether it has been useful, how it has 'worked' for the VCS, how it could be further built upon and so on.

15