At our co-production workshop in Bristol on 23 September 2015 I referred to disabled people who bring whole systems change into the NHS – after recovering from deep crises and taking every opportunity to remodel our own lives. What is this special gift, why is it so valuable and hard to get hold of by the NHS, social care and partners?
Patient and Public Voice – what’s in it for us?
Perhaps it’s a good thing that personalisation/co-production now features in so many more project plans and strategies than ever before. However, we are far from reaching the full potential of person-centred care which would be truly owned and driven by disabled people. The key forums in health and social care – like the recent EXPO in Manchester – still largely focus on a medical lense of ‘long-term conditions’ or safeguarding rather than ‘disability’ or ‘disabled people’ – is this because the latter suggests there is a lot more to doing ‘with’ rather than to people and this should be avoided at all cost?
Disabled people are experts in mastering crises from birth or from diagnosis and then manage change every day. At first glance, we may think we experience a different kind of crisis in health and social care as far as funding models are concerned. But what is there to learn from disabled people when it comes to the new models of delivery in Better Care Fund, Vanguard and IPC sites? How can we foster ownership and make services and support more directly answerable to people? Peer support has been a natural response in the disability movement, yet how it works and what it needs is still not understood and incorporated by the centre. Undoubtedly, if people are supported and some resources go with them, they will tap far more into their own support networks while opting for less intensive care, support and treatment options. To this end, statutory systems need to build a lot more on how people lead their own holistic lives – with and irrespective of any long-term condition.
There’s also great potential to create collective spaces, plugging the gaps between individual ‘choice’ and wider determinants of health inequalities affecting groups, by people banding together to form peer-led commissioning organisations for example. How can we have a health and social care system that largely excludes those with lived experience from service planning and delivery when most would be very happy to explore and then pass on their most valuable insights?
There’s a lot of confusion with the increasing ‘voice work’ that is going on – what is happening with all the voice that is being gathered? Some professionals produce fancy ‘you said – we did’ tables which often just mask inaction. In some local areas peer support is popular but largely used as a means to promote self-management so people can be discharged better. And at the earliest possible point disabled people then have their ‘patient activation’ measured: “great, you smile more – tick – off you go!” Essentially, this approach builds on people as change targets: something is done to people who are seen as inflexible when compared to dynamic professionals. Even if any such action may lead to good (health) outcomes in the short term, this applies to individuals only and there would be no aim for co-production to improve whole systems with disabled people acting as change agents or sponsors.
We’ve found lots of ways to help professionals and providers ‘let go’ of ‘their’ service users and move towards genuine co-production – if system partners such as local CCGs and Adult Social Care departments, NHS England, Department of Health and Public Health England support us. Staff training (on the NHS Constitution or even on patients’ journeys) could be delivered by patients. Disabled people could lead on new, refreshed pathways and promote them to the wider local public – such creative swapping of roles and breaking down boundaries would make NHS Citizen the tangible social movement that it claims to be. A ‘right to peer support’ at diagnosis and crisis points would change the landscape of services and support immediately. We’ve also developed models to support providers to help service users kick-start their own user-led organisations (ULOs) with a role in quality-checking for example – or in the case of housing providers, a ULO’s role could be that of a handyperson’s service to repair and maintain the buildings people live in themselves.
Disability Rights UK pushing user-driven commissioning in several sites
At the heart of all this is our programme on user-driven commissioning which we started in 2012 and for which we now establish new project sites – we are very happy that we will be able to use an ESRC grant (through partnering with the University of Bristol) to study the impact disabled people can have on NHS and social care systems and processes.
User-driven commissioning is a tried and tested approach to support, gather and translate lived experience of people’s pathways into experience and outcome measures for contracting. A previous example related to the co-procurement of a five-year Children and Adolescents Mental Health Services (CAMHS contract.
Typically, the development stage for user-driven commissioning starts with an upfront commitment by the commissioner, eg making 20% the defined stake for a new Lived Experience group to exercise in a forthcoming procurement round. We then bring together a group of local disabled people/patients with lived experience of a certain care area or also across care areas, eg Personal Health Budget Holders in the context of the Integrated Personal Commissioning programme. With a range of games and team-building exercises, the lived experience group will be facilitated to open up to each other and explore and share life stories. People will then move on to map out risk and protective factors in feeling good about themselves. They will then go on to explore the range of existing services and support – also taking into account and building on what their peers may have fed back in the past. After that people will set out a vision of what a landscape of ideal services and support would look like. Depending on the purpose agreed with the statutory body beforehand, the group will then take a more specific focus, eg on experience and outcome measures (to be translated into metrics) or co-procurement as a distinct stage in the commissioning cycle.
The project sites will come to an end once a tangible impact has been achieved. This can take the form of a refreshed service specification with clear indicators written into provider contracts and informing new payment profiles. The impact can also be a whole new landscape of services and support after a fully-fledged procurement exercise, steered by the lived experience group exercising a defined stake of say 20% in the decision-making on the winning bidder(s), following defined ITT questions put to them.