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Project achievements

Update from the Win-Win Alliance – disabled people leading change

Disability Rights UK heads up a user-led consortium as one of 22 strategic partners in the ‘health and care voluntary sector strategic partner programme’. Our name is ‘Win-Win Alliance – disabled people leading change’, and the partners in our user-led consortium are Shaping Our Lives and Change.

The programme is commissioned by our system partners, the Department of Health, NHS England and Public Health England with whom we work collaboratively and strategically. Basically, as strategic partner we are well placed to raise particular challenges facing our members of disabled people’s user-led organisations. Our central goal is to support people so they can directly research and influence policies and achieve a lot more everyday for and by themselves.

The Win-Win Alliance is committed to equality and the transition of power to full choice and control by disabled people. Our approach is two-pronged. We identify and mobilise grassroots movements of emerging and established patient groups and user-led organisations. Additionally, we engage with numerous programmes and commissioners to embark on co-production so disabled people and patients have a robust impact on outcomes-based commissioning in NHS and social care. What is the win-win situation? Commissioners tap into in the Lived Experience of disabled people and both co-create improved health outcomes, independent living as well as productivity gains.

We also ensure that information and opportunities to engage with system partners reach our members through updates, forums, meetings and discussions, and we regularly inform about funding opportunities (which you may pursue with or without Disability Rights UK). For any comments and/or ideas about how to strengthen ‘disabled people leading change’, get in touch with Sue.Bott@disabilityrightsuk.org

For 2015-16 the Win-Win Alliance delivers seven projects – this is an update for quarter 2:

1. Improving experience and uptake of Annual Health checks, cancer screening and behaviour change programmes based on peer support and on the terms of (learning) disabled people in deprived neighbourhoods

Initiated project with Macmillan to train up people with experience of cancer services so they can support their peers through Annual Health Checks and cancer screening (direct support to people means there is greater knowledge and confidence and less likelihood of symptoms being explained away). Now seek to mainstream this initiative on back of wider Macmillan EasyRead information programme. 

Shared communication learning with Public Health England, NHS England and Cancer Taskforce for upcoming cancer strategy (16-6) on:

a. GPs and PPGs bringing together groups of people with shared characteristics to foster peer exchange on Annual Health Checks and other health programmes

b. Direct and further reaching peer support prior to and following screening programmes, eg in deprived neighbourhoods 

c. Models to support the above within and outside existing payment profiles for commissioning

2. Co-creating conducive environments for peer-to-peer communities - learning from the disability movement to bring about peer-led communities. This is to consolidate the vast opportunities of peer support for health, social care and beyond

One exemplary finding so far:

- Some disabled people had started their own businesses using peer support models (eg small scale farming; office services) as an extension to their own skills because they had not been able to get work without such a wider framework of support. In this way they were sharing support, working and being paid and gaining valuable work and life skills.

We seek to establish the ‘right to peer support’ at diagnosis and crisis points to be accessed by the GP. We support the Patient Online agenda so people can access their own care records and also write into them. We build the case for peer support through facilitated ‘letting go’ conversations with commissioners and providers. We co-facilitate the Sussex Peer Support Network. We bring peer support into the NHS through co-production with disabled NHS staff groups and the Equality & Diversity Council.

3. Helping to kick-start, make the research and business case for and provide infrastructure support to local disabled people’s user-led organisations (DPULOs)

Created database of self-advocacy groups and ULOs, and this enabled wider engagement between groups and large health and social care services. Part of this is - in a joint project between WWA and CQC – to empower people with learning disabilities to engage more effectively with CQC both as a public facing organisation and during their inspection process.

Scoped out a new user-led organisation for learning disabled people to conduct paid quality-checking roles as part of or outside of user-driven commissioning projects. 

4. User-driven commissioning and integration through patient pull and outwards accountability towards service users   

We launched UDC in 2012, starting in social care. Since then we have transferred the approach to the NHS, and UDC has become a tried and tested approach to support, gather and translate the Lived Experience of people’s pathways into experience and outcome measures for contracting or a fully-fledged procurement exercise.

We do not act as service provider, rather we support disabled people to bring this holistic approach to life with their peers so that whole systems change can be achieved for a local / care area. We currently work with four sites, including a CCG consortium in North Yorkshire, Inclusion Health groups and the IPC site Tower Hamlets (where we support the procurement of the Integrated Personal Budgets support delivery contract). A UDC project on the co-procurement of a five-year CAMHS contract in Birmingham was recently completed.

5. One-stop shop of a) peer-led support combining advice and information on personal budgets, transition to NHS Continuing Care (PHBs) and Care Act rights and b) Care Act guide in a rights-based approach relating in particular to information, advocacy and support planning and covering health and social care

Care Act guide ‘to tell it is how it is’ is in the making as is the new peer support online forum – subject to website re-design at DR UK.  

6. Furthering accessibility (in the broader sense) and implementing the Accessible Information Standard (AIS)

The AIS was approved on 3 July 2015 with great support from our partner CHANGE. AIS (peer) champions developed and delivered ‘better communication’ and AIS training for health and social care professionals. Developed easy read information informing people of their rights under the Standard. Also supporting forthcoming AIS implementation projects.

7. Promoting equalities and reducing health inequalities, supporting national policy and practice through user-/patient-led perspectives across health, social care, work 

Assisted in the development of new subgroup ‘Inclusion Health and Lived Experience’ to the Equality & Diversity Council (of which we are a member). Supported task & finish group on proposed Workforce Disability Equality Standard (WDES) and set out pilot outline for co-delivery and campaign until 2017.