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04 Strategic partner updates May 2015

12 May 2015

Health and Social Care update from our work as Strategic Partner to the Department of Health, NHS England and Public Health England

Disability Rights UK heads up a user-led consortium as one of 22 strategic partners in the voluntary sector. Our name is ‘Win-Win Alliance – disabled people leading change’. This programme is commissioned by our system partners, the Department of Health, NHS England and Public Health England. As strategic partner we are well placed to raise particular challenges facing our members of disabled people’s user-led organisations. We also ensure that information and opportunities to engage with system partners reach our members through this and other updates, forums, meetings and discussions, and we regularly inform about funding opportunities (which you may pursue with or without Disability Rights UK). This month we particularly invite our members’ contributions to a new research & development project on ‘user-driven commissioning. For any comments and/or ideas about how to strengthen ‘disabled people leading change’, please get in touch with Bernd.Sass@disabilityrightsuk.org 

With some support of the Strategic Partnership Programme and an ESRC grant we want to focus on ‘what makes change happen?’ The special thing about this initiative is that it has both development and research elements – so we can help make things better and then study the impact that this is having. If we co-produce projects, can we disabled people have a positive impact on professionals and on what they are doing? How does this happen?

Maybe your DPULO is already involved with the local Clinical Commissioning Group or Adult Social Care department – say on co-producing experience and outcome measures that would be written into provider contracts to determine (to an extent) the payment of these providers. Or peer support is really about to take off from a well resourced and supported basis in your local area?

If you would like to work with us on any such projects in the future or simply showcase what you have done, please get in touch with Bernd Sass at Disability Rights UK bernd.sass@disabilityrightsuk.org . Or call him directly on 07906 521536. 

Further specific news – quite short due to PURDAH restrictions during election campaign 

Our work on Equality and Diversity Council’s subgroup on leadership and workforce – a short note on co-production

DRUK’s Win-Win Alliance is part of the Equality and Diversity Council’s subgroup on leadership and workforce. Here we promote co-production with individual disabled people and DPULOs (‘why and how lived experience matters’) to key national leaders: listen - value - invest.

There is now a common understanding of the need to focus on co-production in the sense of embarking on involvement as a journey beyond one-off consultation meetings. Some of the key (yet still often missing) words are ‘meaningful’ and ‘sustainable’ involvement with ‘impact’. Co-production means breaking through the boundaries between staff and patients to co-deliver agreed health and wellbeing outcomes, and this lever for improvement and equality is most underused. For example, making peer support an integrated element of commissioned care pathways would immediately bring lived experience into the focus as an essential part of workforce and leadership in the NHS. There are also tensions between medical and social aspects in any care pathway, eg clinicians not valuing the importance of patient input into diagnosing and managing a longterm condition which regularly results in misdiagnoses. Patients are also not able to easily feed back information that is medically relevant, such as a change in medication. Local community or care navigator models cannot plug this gap – they are supposed to signpost to other services when in the case of peer support there are mostly none.

There needs to be a wider discussion as to why and how lived experience must be integral to leadership and workforce issues in the NHS and social care as well.

Equality Delivery System 2 (EDS2) – have you had any experiences with this tool to assess equality within the NHS?

As of April 2015, the implementation of EDS2 is mandatory and is a tool for the NHS to use for better health outcomes and to reduce health inequalities. Based on the original Equality Delivery System, EDS2 must cover 9 protected characteristics and other disadvantaged groups. The implementation is a 9 step process with 18 outcomes under 4 goals. NHS aim to have EDS2 implemented by March 2016 and have stated that 92% have already implemented it. The assessment process requires stakeholders to be involved, as opposed to it being internal.

We would like to hear from you if you had any local involvement with the EDS2 (or at least indirectly with the local Joint Strategic Needs Assessment) – we assume there will be only be a very small number of DPULOs or individuals and so it would be even greater to feed your experiences back into a guide we’re coproducing with the Race Equality Foundation, LGB&T Foundation and the Men’s Health Forum. Please get back to bernd.sass@disabilityrightsuk.org or on 07906 521536. 

Supporting People with Learning Disabilities and/or Autism to engage with the Care Quality Commission (CQC)

Together with our partners in the Win-Win Alliance we have been asked by the CQC to promote the standards of care, signal inspections and encourage feedback on experiences of care from people with learning disabilities, their families and carers across all services. It is important to stress that this work is about two-way communications (promoting CQC products AND gathering people’s views and experiences of services). Wherever possible, we want these communications to be long-term – not one off consultations on the internet or during events. There will be a particular focus on learning disability specialist services and community-based social care services. If you know of (or are part of any group) that meets locally or regionally and may be interested in these discussions we very much look forward to hearing from you. Please get in touch with Bernd.Sass@disabilityrightsuk.org or 07906 521536. 

Deprivation of Liberty Safeguards - the Care Quality Commission (CQC) would like to hear about people’s experiences

The Deprivation of Liberty Safeguards are part of the Mental Capacity Act 2005 (MCA), and are used to protect the rights of people who lack the ability (mental capacity) to make certain decisions for themselves.

The Care Quality Commission monitors the operation of the Deprivation of Liberty Safeguards in England and reports on this each year. 

As with previous years, CQC want to understand better the experiences of people who are or have been subject to the Safeguards and their families, to help inform reporting for 2014/15.

CQC are calling for examples for the year 2014/15 which will tell them about the experiences of the person at the centre of the process. They would like to hear about cases where the Deprivation of Liberty Safeguards worked well for the person and cases where they did not work so well. They would also be interested to receive any examples of good and poor practice regarding the use of the Safeguards in care homes or hospitals, including whether and how the relevant person’s perspective was taken into account.

It is also particularly helpful to know:

  • was the person and others concerned with their care, involved in the decision
  • did someone help them to understand the reason for the deprivation of liberty
  • if they were unhappy with the decision did they have a representative to support them to appeal against it
  • was the decision kept under review and the restrictions reduced or removed as soon as possible. 

CQC would like to receive any information during May and June and you can send it to engagementandinvolvement@cqc.org.uk . They would be really grateful if you could share this with other organisations and partners who you feel may be able to help us. Hearing from families, carers and advocates is also enormously helpful – as they can share their experiences of supporting loved ones who have been or continue to be subject to the Safeguards. CQC are also contacting other colleagues including IMCAs around the country.

Launch of  the Youth Select Committee

The British Youth Council is proud to announce the launch of their annual Youth Select Committee - which for 2015 will be an inquiry into youth mental health services. The inquiry will explore issues around awareness, education and services for young people (under 25) and is calling for a wide range of witnesses including young people, campaigners, experts and parliamentarians.

The British Youth Council are encouraging individuals and organisations to submit evidence – please also share this information with other groups and experts you work with.