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Quarterly Meeting Notes

29^th June 2011

Venue: Soho Centre for Health and Care

Theme:

Partnerships for better prevention and treatment of Type Two Diabetes for BME Communities

Eddie Chan (Chinese National Healthy Centre & BME Health Forum Chair), welcomed all to the meeting and introduced the first Item.

He also announced that the second half of the meeting will be chaired by Pete Westmore (INWL).

Item 1:

Setting the scene  

Nafsika Thalassis  – BME Health Forum Manager

Nafsika talked about the purpose of today’s meeting. She said it is about finding ways to work together to reduce diabetes and also look at how BME organisations and statutory organisations could form partnerships. She went on to highlight how this is a hard time for BME organisations and also the NHS. BME organisations are looking for opportunities to be commissioned to deliver services and partnerships would be a beneficial way forward for everyone.

Item 2:

Findings from our research with BME diabetic patients

Ronke Jomo-Coco, Black and Minority Ethnic Diabetes Association (BEMDA)

Ronke described her presentation as a synopsis of a consultation on with BME communities around diabetes care in Westminster.

To read the power point presentation press this link.

Q&A

Question: You mentioned encouraging children to translate leaflets and information to their parents as being useful – surely we should be discouraging children from being used to interpret for their parents.

Answer: Yes – I agree in formal settings such as at the GP and in hospitals children should not be interpreting for their parents, but in the home – around the issue of diabetes it is a different issue and it is useful as diabetes is a family affair – and everyone in the home should be aware of the issues.

Question: You mentioned that participants wanted to have more support groups. Can you tell us what is currently available for them?

Answer: Well BEMDA used to run a very much used support group – however since losing our funding we are no longer able to book space to keep this going.

Item 3:

Workshops 1 & 2 (concurrant)

1. What changes are needed to reduce the incidence of Type Two diabetes in BME communities?

[Transcript of flipchart notes including added comment in feedback for this group]

1. • Fitness and diet
   • Behaviour change (sustainable) – change in eating habits
   • Targeting of high risk groups
   • Raising awareness – including family members
   • Raising awareness around testing/ early diagnosis – use of influential people in the community
   • Cooking – healthy eating
   • Training behavioural change theory in community – achievable (Health Champions)

2. What changes are needed to improve outcomes for BME patients with Type Two diabetes?

[Transcript of flipchart notes including added comment in feedback for this group]

• Utilise/ summarise research findings
• Look at issues around screening
• Get a consistency of education between professionals so there is consistency in advice being given for self management
• Not allowing escalation/ crisis point and then increase of cases at A&E (which is also not cost effective if looking in financial terms)
• Better self management advice – empowering patients
• Getting information that is available to be more culturally appropriate
• Integrate care across different services
• More education for patients of what their rights are - more confidence to challenge GPs’ decisions – e.g. questions around change of medication.
• Patient groups – or look at alternatives
• Utilising community organisations to promote screening
• Organise events – to get screening rates higher
• Pay community organisations to do outreach based on numbers that attend – QUIPP agenda
• As stated in BME Health Forum’s recent ‘Good Practice in Access report’ – use cultural brokerage to break barriers. 

Item 4:

INWL PCT’s Diabetes Service User Group, Diabetes Champions & Mentors 

Christine Mead, Senior Public Health Manager – INWL PCT 

Christine spoke about how they are in the middle of putting together a diabetes service user involvement group for K&C and Westminster.

It started with a pilot in Hammersmith & Fulham to get users involved in putting together services and to impact on a broader strategic level.

It has given them a chance to look at the whole picture – to look at experiences patients have with different GPs and also to see who is accessing services and who isn’t.

There is now three times as much education available – most did not know that education in diabetes was available.

A patient charter was created formatted on 2 sides, On the first side there is a description of what you can expect from the service and on the other side is a description/ check list of what you can do for yourself.

These improvements and initiatives have come directly from the users in the group and they would really like to broaden it.

The next meeting is on 13^th July 2011 – it is an open meeting. Things will be discussed will include will be how a service user group can be beneficial or if any other options might be beneficial to discuss what these might be. They hope to get everything running by September.

The group will be directly linked up with the PCTs and hospitals who will report back on why decisions have been made – or not been made.

Diabetes Champions

Christine went on to talk about current funding available to recruit Diabetes champions from the community to help raise awareness of diabetes in the community. They are looking for people from diverse communities and different languages. For those who are interested to become diabetes champions they need to get in touch with Christine by the end of July.

Q&A

Question/ comment: Westway and Paddington development trust run Health Champion schemes – it would be good to get all different health champions together to share info.

Question/ comment: What kind of support will be available for Diabetes champions in terms of professional development and scope for continuing their work?

Answer: Well of course they will be offered training for the role but these are volunteer positions.

Question/ comment: If community engagement is the way forward, yes, volunteering is very important – but there should be scope for paying volunteers in the future for this kind of work.

Question: In your pilot user involvement group were BME patients represented?

Answer: yes, in fact there was quite a fair representation of BME communities in the group.

Question/ comment: Do you think there is a chance that diabetes care to be introduced as an NVQ? And if you are not paying the volunteers as Diabetes Champions it would be good if you could offer some sort of accreditation to help them move into more formal education.

Item 5:

The Integrated Care Pilot

Mark Hindmarsh, Service Manager for Diabetes, Imperial College 

To read the power point presentation press this link.

Q&A

Question: How will this work exactly? Will patients refer themselves to this service?

Answer: They’ll see their GP first and then get told to come back on a specific day where all the services/ professionals will be available to them on the same day and in the same place.

Question: Sometimes GPs are not diagnosing patients for some time - can PCTs make sure that specialists are available at all the surgeries?

Answer: with these integrated services becoming more available it should encourage more awareness and knowledge about diabetes amongst GPs as well.

Question: How will this service work with local organisations?

Answer: This type of service gives us the option to work more locally and to better respond to the needs of local BME communities.

Item 6:

Partnership between a BME organisation and NHS – an example

Eddie Chan, Director – Chinese National Healthy Living Centre 

Eddie started by giving some background information about the Chinese National Healthy Living Centre and the work they do before outlining the development of the specialist Hepatitis B clinic they run in partnership with 56 Dean St and Chelsea & Westminster Hospital NHS Foundation trust.

To read the power point presentation press this link.

Further point raised regarding CNHLC’s capacity to follow up with patients who are diagnosed at the clinic:

When patients get diagnosed with hepatitis at the clinic, a letter gets sent to their GP asking for a referral for vaccination or treatment. CNHLC occasionally get feedback from patients who say that their GP hasn't  referred them and in those cases the organisation follows this up with the particular GP. However, when the patient doesn't get back to the organisation, CNHLC have to assume that the referral has gone through -they don't have the capacity to chase every referral with every GP.

Item 6:

Workshop 3

3. How can we work together to make these improvements? Do the changes in the NHS provide any opportunities for partnership working?

GROUP A

[Transcript of flipchart]

• Accessing BME Groups – Voluntary Action Westminster
• Partnerships are expensive

Partnerships provide preventative care

• Funding is needed

Clear, robust business cases are required

Health Trainers – evidence shown about successful partnerships

• Identify ‘useful groups’

-through networking meetings

• Identify problems groups can tackle
• NHS/ PCT scouting community resources
• Referrals to BME based activities through GPs
• Telephone based services for discussing care plans – not just NHS services
• Patient groups set up for GPs to hear about patients’ needs
• Create communication networks for PCTs to inform patient groups of -
• - collaborative working

• NHS is encouraging partnerships
• Funding is available
• Coming down to community level
• Challenge for community groups to access this funding
• Using community leaders to access hard to reach groups
• Looking at specific health concerns
• Looking at other agencies such as councils – broader partnerships
• Taking into account peripherals – such as childcare needs for patients
• Looking at making partnerships wider and so reduce duplication of services such as health trainers

Actionable

• Health champions/ trainers to meet
• Understanding existing resources, designing strategies including BME groups early on in the process.

GROUP B

[Transcript of flipchart]

• Use evidence from existing work
• Identify the gaps in service provision through working with the voluntary sector
• Target pilot partnerships according to disease risk in communities e.g. Hep B, sickle cell
• Appreciate the stigma and plan accordingly
• Place community groups within the integrated care model
• Help with signposting + holistic support including providing social support. (promotes well-being)
• There is an existing relationship and trust with community groups which helps inclusion and can help with reducing stigma
• Focus on a model which promotes access
• Instead of the statutory sector trying to do the research and duplicating work of community groups = partnership is key
• Integrating community health into community services so that you could be accessing services for any reason: so no stigma

Do the NHS changes provide opportunities?

• Take care to the community
• Be fluent in talking about our outcomes (in terms of support and benefits)
• We must prove/ highlight that working in partnership will help with cost savings
• NHS do not have the resources and expertise to engage with BME groups and partnership work is a more efficient use of resources
• Community groups can help at both prevention and rehabilitation stage
• We must rebuild partnerships with commissioners and commissioning GP consortia
• We should pull together more and share best practice

Information Sharing – end of meeting.