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.

Sceptical Trust

This blog first appeared in New Local Government  Network:

I know someone who’s renowned for his scepticism. The only problem is, he’s now so sceptical that he doesn’t feel able to trust anything. People who post videos on YouTube seem to have as much, or little, credibility as professional journalists. After all, journalists can succumb to group think. And who’s paying them, anyway?

The results of blanket scepticism look surprisingly similar to the results of blanket credulity. But in a corruptible world, where fake news looks ever more real and we are weary of being let down, how can we trust each other? Why should we?

I work with people who are temperamentally inclined to trust other people. They open up their own homes and lives to people who they have not known for very long. And sometimes it doesn’t work and they cope with this, but I hear constantly that living this way makes them happy. They are realistic about the people they live with, but often able to see and value them in ways that others cannot. Those who are considered vulnerable – the very young and the old – could be most at risk from this openness, but they are also those who appear to benefit most.

For instance, Homeshare organisations help older people to take an unusual risk: to let someone they have only recently met into their homes. There are police checks, references, interviews, but the core of the model is about helping two people establish trust. Recently I was also talking to two young women whose parents were Shared Lives carers. They had valued the experience so much that both were now involved in Shared Lives as adults, contributing untold amounts to those around them and their communities. If Shared Lives or Homeshare arrangements don’t work out, the local organisation steps in to help, but there is always an element of risk.

The risks of trusting no one, however, are stark. When we start to avoid the risk of trusting others, it can give us a short term sense of safety, but everything we value is corroded. Loneliness not only crushes happiness; it is in the same bracket of health risk as smoking. It is now endemic amongst older people, and even the best health or care service can’t fix it.

I also spend quite a bit of my time with a group of people who generally come quite low down on people’s trust list: politicians. My experience of them is that, whilst I often disagree with them on lots of things and sometimes feel we have very different life experiences and world views, they are generally people who believe they are helping other people. They work ridiculous hours and a lot of what they do is not at all glamorous, but is absolutely necessary in a democracy. They are as flawed as the rest of us, but based on having met quite a few, I am inclined to approach them with an attitude of sceptical trust, because without it we have no democracy worth the name. And of course, because I hope they will approach me and others who work for charities with something like the same attitude.

This seems a strange time to be suggesting that we all trust each other – whether we are Shared Lives carers or politicians – more. As 2017 picks up where 2016 left off, I am not completely confident that I will be able to practice what I preach on this, all of the time. But if you’re willing to try to approach me with something like sceptical trust, most of the time, I will do the same for you.

It is, I think, from small acts of trust that functioning communities, organisations and even nations are built.

“I want to inspire other people to learn to read”

Ursula has been in the news, having been learning how to read through the help of her Shared Lives carer, Lesley, who is part of Shared Lives South West. Ursula is 87. The education system of her childhood had little ambition for Ursula and at school, she would sit at the back of the classroom with a friend that could read, turning the page when she did. One of the reasons Ursula has learned to read is because she loves knitting but was unable to read the knitting patterns. As so often happens in a Shared Lives household, Lesley got to know Ursula well enough to see her capabilities and potential, not just her needs. Rather than Ursula’s support being arranged around a busy shift work pattern, they have the time to spend together to learn at Ursula’s pace, as well as Ursula being supported by Learn Devon. Ursula says she hopes to inspire other people to read from her example.

We see people achieving extraordinary things all the time in Shared Lives arrangements, often in later life. I always have mixed emotions about these stories: inspired that people have rejected a lifetime of assumptions about what they cannot do, but angry thinking about the decades of expensive support services and ranks of experts who were either unable to see the person, or content with a lack of ambition. In the field of psychotherapy, there is research to suggest that the quality of people’s relationships with professionals has at least as much impact upon the outcomes of support as the technical skill of the practitioner. Shared Lives is implicitly built upon this insight: most of the investment is in getting the right people involved as Shared Lives carers and then matching them with people with whom they may be able to form a unique connection. Not every match works out, but when it does, the results can be astounding. Shared Lives carers will often report that it was not a complex intervention which helped someone change, but simply their relationship with a family member or even a pet. We often hear that the Shared Lives carer’s children are the ones who successfully encouraged their new household member to learn a new skill such as riding a bike.

Recently, another Shared Lives carer, Sarah told us about one of the men who lives with her: “One of our housemates has had his art etched on the glass walls of a newly renovated crypt at Rochester Cathedral- and he is soon to embark on his first solo exhibition … aged 70!”

The Budget

The budget includes the promise of £2bn of new money to fund social care over three years. This is a welcome response to the current crisis in social care which is seeing care homes, home care businesses and other crucial forms of support for adults and older people going bust, or suffering unacceptable levels of failure. The gap between what is currently spent on social care and what is needed is more than £1bn, so this will not on its own bring back support for the 1.2m older people who no longer get support (an increase of around half in recent years).

The money is a grant so, according to Richard Humphries at the King’s Fund, is unlikely to be ongoing and is likely to have ‘strings attached’. I have mixed feelings about this. On the one hand, councils, particularly in the poorest areas where cuts have been greatest (according to the cross party Public Accounts Committee), badly need the freedom to prop up existing services which are collapsing under the opposing pressures of budget cuts, increasing numbers of older and disabled people and increasing costs of providing care (not least the hundreds of millions needed to fund the – very welcome – national living wage in this traditionally low-pay sector). But on the other hand, the Better Care Fund experiment showed that well-intentioned but un-ringfenced money put into a stressed system results in little transformation: the crisis subsides and then reappears. Our forthcoming report on the national picture of Shared Lives development will show widening divergence between places investing heavily in Shared Lives because it offers them a sustainable model which fits with people’s lives, and areas apparently unable to invest in anything new.

Already the HSJ is calling for the new grant to be allocated to initiatives which focus on getting older people out of hospital. A narrow focus on what forms of social care will immediately alleviate the current pressures in the NHS will not ultimately achieve its goals. The models which work are those co-designed by social care providers, including the voluntary and social enterprise sector, and the people and families who make most use of services themselves. They are built around goals like wellbeing, independence and resilience. By putting people’s needs (and capabilities) at the centre, rather than services’ needs, they ultimately lead to benefits for the NHS which would not be achieved if benefiting the NHS was the starting point.

The budget also promises a Green Paper which will consider how to put social care on a sustainable footing. It is impossible to answer that pressing question without giving equal consideration to the question of what the money will be spent on in future. This cannot be ‘a more efficient version of what usually do’. It must be a social care system built around serious ambition for the scale and effectiveness of community-based models which have been considered add-ons for too long. As this SCIE paper outlines, it’s time for the models with most chance of success to become core business.

Response to the CLG Select Committee pre budget report on social care

In its Pre-Budget report for their Adult Social Care inquiry today, the Communities and Local Government select committee calls for The Chancellor to bring forward £1.5bn funding from the ‘Better Care Fund’ to plug the hole in social care funding in the year ahead (2017/18). The Better Care Fund is a national funding pot which was intended to be spent on improving adult social care and bringing social care and health together, easing pressure on hospitals and the NHS. It has been announced but is not due to be released until 2019-20, despite the current crisis in social care funding which is seeing care homes and home care businesses closing and worrying signs of quality and safety dropping. The Committee also calls on the Government to commit to closing the funding gap for the rest of the Parliament through to 2020.

We gave written and oral evidence to the Select Committee about the role which innovations like Shared Lives and Homeshare could play in transforming social care. I agree with the committee that the Better Care Fund should be brought forward. But this would be to plug a current gap between what is being spent and what would be needed to achieve anything approaching minimum standards. It would not result in ‘Better Care’, but a slightly eased crisis. For better care, we also need a national vision for social care which has real ambition, which is prepared to take some sensible risks in scaling up the most promising models and significant additional investment. Programmes like Nesta’s Realising the Value and our work with SCIE and PPL on Total Transformation point the way towards a health and social care system which would work and be affordable long term, rather than relying on crisis handouts year after year. We all deserve better than that.