What would good look like?

When we talk about the shift towards a ‘people-powered’ NHS, we often talk in terms of culture and vision, but avoid suggesting actions which would transfer power to people, whether that power is in the form of money or other system levers. Chapter Two of NHS England’s Five Year Forward View set out how healthcare would become more community-based and people-powered. Whereas other changes involved setting up new kinds of organisation or using money in different ways, Chapter Two was a vision for doing things differently, with less clarity at that time about what new kinds of systems, services and relationships between people and the NHS would make that vision real.

During the last two or three years, we have learned more about what helps and what gets in the way of making the vision real. Shared Lives is one of a small number of new community-based support models which NHS England is directly backing to make the shift. Many of the Sustainability and Transformation Plans (STPs) which every area produced for its local health and care system talked about the need for a more community-based model but I haven’t read one which sets out a process for the transfer of money, knowledge, power or responsibility to local people and their representative organisations.

When that transfer doesn’t happen, nothing really changes. A highly regarded social prescribing programme, which demonstrated that it was enabling people to access new kinds of community support and improved their wellbeing, has just been ended by a CCG which decided it couldn’t afford it in tough times. It worked, but never became regarded as core business. The outcomes it achieved clearly weren’t those valued most by commissioners and the organisations involved did not achieve the status of equal partners with their statutory equivalents.

We need to put what we have learned into the NHS’s plans, and later in the year, the social care Green Paper. I think there are three kinds of change which would be present in an area which was doing people-power well:

1. At least some of the money spent on health and care provision would be paying for people-shaped outcomes such as ‘wellbeing’, as it is defined in the Care Act.
2. An element of the area’s infrastructure and commissioning budget would be paying for infrastructure that reaches, engages and convenes people, supporting them to take decisions at both individual and area level.
3. Some of the oversight, performance and regulatory levers would be in the hands of people, via experts by experience and also their local groups. Current consultative structures would be replaced by well-resourced, trained and accountable forums and groups with teeth.

What would push or pull local health systems towards those three new ways of doing things?

The NHS is already putting some of its money and resources in people’s hands through an ambitious Personal Health Budget target. But this needs to be matched by ensuring every area has a brokerage service to help those people (particularly those least able to choose) to make individual choices and to connect with others who want similar things, to pool budgets and start to commission (design and improve services) rather than just to buy them. The Social Value Act enables commissioners who buy public services to demand that their suppliers give them added ‘social value’, such as using volunteers. The Act’s powers are used in a quarter of councils, but by very few NHS commissioners. This has to change.

It’s not just cash that needs to be put into people’s hands. In a people-powered area, family carers would be able to access medical expertise, training, equipment and emergency back up to sustain their caring roles. Social prescribing programmes can put money and resources into the hands of local community groups and social enterprises which help people to live well. Initiatives like Local Area Coordination and Health Champions create connections between people who use health services and their services and communities.

Some of this won’t happen unless the NHS moves some of the money it spends on infrastructure into people’s hands. Health commissioning is expensive, but currently most of it is ineffective in building community-based care, so some of its resources should be spent instead on people and organisations which can help citizens themselves co-design new models of care. Most local areas have organisations which organise and speak on behalf of the voluntary sector, such as the local Council for Voluntary Services and which represent people’s voices in health and care such as HealthWatch and Learning Disability Partnership Boards. Some have organisations which effectively build a local marketplace of lots of different kinds of charities and social enterprises. A handful build the smallest enterprises. In many areas these different kinds of organisations are fragile and disconnected, with unstable funding. User-led organisations and organisations representing overlooked communities are losing funding. None of these organisations have teeth. A people-powered area would bring those organisations together into a wellbeing hub which would ensure that citizens and their local organisations could help to design and monitor health and care services. It would inform and build a local marketplace of service providers and it could help local peer support groups and be a link between such grassroots initiatives and clinicians and other experts within the system. Commissioners should have to make themselves regularly accountable to the people they serve and a hub would be a way to resource and bring together user-led and self-advocacy organisations to make this happen.

This isn’t just about putting resources into people’s hands and offering them new rights. Rights are only meaningful if those people who engage share responsibility and ownership of the new system. So some of the system accountability must be put in people’s hands. As well as the hub model above, we need a new set of measures of what the NHS and care organisations achieve, which measure wellbeing, not just narrow clinical outcomes like mortality. Some health and care system performance measures could be wholly or partly scored by people who use health and care services and their local groups such as self-advocacy groups for people with learning disabilities and carers’ organisations. Local systems would need to develop, resource and challenge those groups to perform that function, which would help to address the longstanding problem of voice organisations existing on sufferance and scraps of money. They would also need to recruit experts by experience to use in commissioning, monitoring and inspection.

This turned into quite a techy blog. That’s deliberate: if we mean the vision for health and care which is rooted in communities and delivered with and by people themselves, we have to be able to describe the different systems and ways of spending money which would make that vision happen.

Whatever we find out we share

Recently, I had the pleasure of helping to organise a meeting between the Shadow Care Minister, Liz Kendall MP, and members of the Partners in Policymaking network, which is hosted by In Control.

Partners in Policymaking is a series of course for people who use services and family carers. People who have been on the courses have formed a network which now includes around 2000 people. The network only has one paid member of staff, Lynne Elwell, who founded the UK network, having attended a Partners course in the US in the eighties whilst caring for her daughter Nicola. The network remains very devolved and informal. When someone needs some information, “people ask people who ask people”. Graduates of the course form circles of support around people with learning disabilities and in many cases groups which influence policy locally.

It’s a simple approach with the minimum of organisation and bureaucracy, but it’s incredibly powerful.

Network members put some of the transformational power of the network down to the “lightbulb” moments they have experienced in the courses. Lynne says, “Having a child with a learning disability is like falling down the rabbit hole. It’s a system which is impossible to understand. It took months to get a ceiling hoist from health, then more to get the bracket it needed from social services. All we were offered were institutions when I wanted an ordinary life for Nicola.” Another member commented: “We needed a sit-to-stand wheelchair, but the school and care services couldn’t pool their budgets, so they had to buy a standing frame and then fund an extra room at school and 12 people during the day who are hands on all the time. When we needed a toilet, the Disabled Facilities Grant rules meant we had to get a £3,000 one, when we had identified a £400 which we could have sourced ourselves.”

Frustrated with bureaucracy, Lynne originally got involved with advocacy: “At the time a lot of the campaigners were older parents who’d been through lots of battles and disappointments, so they wanted what they knew and what was safe. The courses are about finding the leading edge thinking and bringing it to parents whilst their children are still young.”

A good example of this thinking is postural care. Postural difficulties experienced by people who have used a wheelchair since birth can be due to growing up sitting, rather than to a physical impairment. “Parents can be offered a whole series of major operations, when many of the problems are preventable if you can get the right information. But postural care professionals in the NHS are scarce, so parents have searched out information and “Whatever we find out we share.”

Professionals can find this approach challenging

Ditch ‘prevention’!

This is the last blog in a series inspired by a seminar with social care leaders which looked at the question of citizen and community-led change.

It became clear early on in the discussion that some people had arrived expecting a debate about ‘social capital’ and community development, whilst others had been expecting a debate about early intervention and prevention. Personally, I believe that both of those concepts do, or should, mean much the same thing. Put another way, soon after I agreed to become the ‘co-lead’ on prevention and early intervention for the social care White Paper, I decided that given the choice, I’d drop the language of prevention and early intervention entirely and replace it with the language of well-being, empowerment and citizen-leadership.

Sue Bott of Disability Rights UK reacted to talk of prevention like this: “People who use services don’t want to be divided into the fixable and the not-fixable”. The problem is that prevention is all about people’s problems (will you be a drain on resources?) whereas the things ‘preventative services’ wish to achieve, are best achieved by focusing on people’s gifts, skills and assets.

‘Early intervention’ is just as bad: if the territory of ‘prevention’ is all about tackling isolation, helping people to connect and empowerment, those are outcomes which are just as relevant to the person who has just started to become less mobile in later life, the person with a life-long physical impairment or the person at the end of their life. No one wants to be lonely: whatever else is going on in your life, being lonely is miserable and worse for you than smoking.

So I think it’s time to move on from thinking about how to save money through reducing NHS admissions, which might involve coming up with wheezes which simply transfer the cost to social care, and instead think whole-person and whole-community. People will always need specialist responses and hopefully those responses will continue to become more coordinated, skilled and efficient. But the real gains will come when all services, whether they are used by people with ‘low level’ or ‘high level’ needs, think beyond meeting the present need and towards increasing the likelihood that the individual – and often their community – will be more knowledgeable, networked and confident in future.

If we can get that right, not only will more people be able to live a good life, with fewer trapped in a cycle of dependence and ‘revolving door’ use of crisis services, but savings generated will be more likely to be real, and to the public purse as a whole, not just to one sector or another.

1 in 5 of London’s User Led Organisations to close

I received an unusually high number of responses to my blog on User Led Organisations (ULOs) below. Steve at NDTi kindly shared the link to a report by Inclusion London, called A Matter of Survival, Funding experiences of London’s Deaf and disabled peoples organisations and implications for disability equality.

The findings are stark: 1 in 5 expect to close, most have been cut and most will be cut again this year. The cuts are already having an impact upon those organisations’ ability to both support the (rising number of) individuals who need them, but also on their roles as campaigning and influencing organisations. Most report that communications with their local authorities were deteriorating, with half saying the council’s plans were unclear.

This picture is a long way from the model of ULOs bringing citizen’s voices to the heart of commissioning processes. http://www.inclusionlondon.co.uk/its-a-matter-of-survival

User-led organisations: endangered species?

I do my best to remain optimistic during these too-frequently grim times. One of the determining factors of what the sector achieves on much diminished resources, will be what we continued to believe was possible. Our public finances perhaps haven’t been this bad since about 1948. But in that year our grandparents looked around at the post-war wreckage and decided that a National Health Service was possible.

Of course, those were the days of when big national infrastructures were created from Whitehall (casual observers may be surprised to hear that the current NHS Bill, with its thousand amendments, is an example of ‘bottom up’ change). Social care has been re-shaped to give more control at the level of the council, the community and the individual.

So User-Led Organisations (ULOs) should be a key part of ‘personalising’ social care. After all, they embody the idea of individuals who use services being in control, and their work is often about people having a voice in local decisions, or being able to shape their own care package. They are also typically small and local, forming a bridge between councils and the people who are most affected by their decisions.

So I couldn’t help my heart sinking when, on the same day, I heard about two areas which were planning sweeping cuts to their ULOs. Had those areas completely misunderstood the basics of personalisation? Apparently not: at least one was an area with leaders who are advocates of personalisation. So what was going on?

It’s always risky to comment on local changes from a distance, but my impression is