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.

Feeling important

“Feeling important is awesome. I want everyone to feel important.” Nick, one of our Ambassadors opened our annual conference alongside the incoming President of ADASS, Margaret Willcox as co-chairs and instantly had the whole room of Shared Lives and Homeshare colleagues and participants engaged. He was talking about the experience of working with Shared Lives Plus as an Ambassador, doing work which makes a difference, as well as about the feeling of belonging and mattering that is at the heart of all good Shared Lives.

At the annual social services conference the week before, I’d enjoyed, as I do each year, catching up with a huge number of colleagues, making new links and learning about some of the most interesting initiatives around the country (not to mention being rubbish in the annual quiz). But a question from a parent of a disabled daughter stuck with me: “I’ve been looking at all these sessions and discussions and wondering where I will find my daughter in them?” The conference did include a small number of sessions led by people with lived experience including the launch of a new model of ‘coproduction’ from the group of people with lived experience at the heart of the Think Local, Act Personal partnership and an inspiring fringe event with DanceSyndrome and Community Catalysts. But in too many of the main sessions there was a yawning gap between the discussion’s topic and participants and the people whose lives were being discussed. When you put a lot of ‘important’ people together, it can be easy to lose sight of what and who is really important. As Nick told us at our event, it’s great feeling important but that feeling should be for everyone.

Our conference now attracts Shared Lives carers and people using Shared Lives, as well as one or two family members and there are sessions which are designed particularly with them in mind, but I suspect that they will at times have felt that gap in some of the discussions at our event too. Involving people who use Shared Lives and Shared Lives carers as speakers, co-chairs and part of the support team has made a huge difference and hopefully prevents us from straying too far from what we are all supposed to be about, but we know we have further to go. Now that our conference has a Homeshare strand for the first time, we are also starting to think about how people who live in Homeshare households can be a part of future events.

Coproduction, as experts like Clenton Farquharson will tell you, is a journey. If you think you’ve arrived, you’ve probably just stopped. At our event, I was immensely proud of the work that we do, of our team and the membership network of which we are a part. It’s rare I think to be at an event for 200+ which feels both nationally important and ‘like family’ as one participant put it, not to mention smoothly run by our amazing office team. But it’s important I think to keep asking ourselves: where are the people who we are talking about in these discussions? If they are in the room, leading those discussions, having helped to design them, the answer to that question is much more likely to be clear to everyone.

Getting off the merry go round

Here’s a blog I wrote in my role as a Trustee of the Social Care Institute for Excellence (SCIE)

Coproduction is a clunky piece of jargon for an important concept. There are lots of good definitions out there. Personally, the way I think of coproduction is that it is about everyone who is involved in a service or organisation, including those who use it and their families, making decisions together as equals, and then working together as equals to make those decisions happen. A truly co-produced service is co-designed with full involvement of people who use it and families from the blank sheet of paper stage, it employs people with current or recent lived experience in paid delivery and leadership roles and there are elected representatives of those people on its board.

There is lots which is co-produced about the sector in which I work, but at Shared Lives Plus, we felt and still feel that we have a lot further to go.

Shared Lives is a family-based way of providing people with learning disabilities, mental health problems and other support needs with the care and support they need in ordinary households. People are carefully matched with approved Shared Lives carers and when both parties feel there is a good match, they share home and family life, with 7,000 people living with their chosen Shared Lives carer as part of the household and 6,000 regularly visiting their Shared Lives carer for short breaks or day support.

So each Shared Lives arrangement is co-produced by the individuals and families involved. What people decide to do with their time together and how they live their lives is based on a care plan, but worked out day to day by the individual and their Shared Lives carer. Like any family life, it involves negotiation and give and take. Chris says: “I go to more places than before, like we just went to Brighton – I couldn’t do that before, there would be a lot more people involved and a lot of planning. Our trip to Rome would have taken much longer to plan for example. In residential I couldn’t go out to a club without having to do a risk assessment and care plan. I feel happy living here. A lot happy. I have independence but also care when I need it.”

We felt though, that the highly co-produced nature of individual arrangements was not reflected in our work to support the sector at a national level. So we are supporting and encouraging Shared Lives schemes to build independent local groups of people involved in Shared Lives who can help make local decisions and, inspired by the work of CHANGE, we have employed seven (very) part time Ambassadors, all of whom have current or recent experience of using Shared Lives. The Ambassadors speak publicly about Shared Lives. They are drafting a Charter setting out what good Shared Lives looks like, which we will be encouraging all local schemes to adapt and adopt with local people. They are also taking part in reviews of Shared Lives schemes.

The biggest impact we have felt as a team is Continue reading

Using time banking to change services

This guest blog is by Jude from Time Banking organisation Spice. Contact details – and details of their conference – below. Spice are using time credits to bring reciprocity and partnership – co-production in the jargon – to all kinds of communities and services. I’m a big fan and the examples below should inspire any service. So thanks to Jude, who writes:

Over recent months it has felt like hardly a day has gone by without another story about social care hitting the headlines – few of them positive. Staff on zero-hours contracts, 15 minute care visits, high profile care failures – the list goes on. It’s hard to deny that these are challenging times for the sector, and for the people who work in it. There is a broad recognition and agreement that changes are needed to overcome these challenges – but what’s actually happening in services?

One example of introducing new ways of working is the programme Spice has been developing with Look Ahead Care and Support over the past two years. We are training support workers in 18 services to design and embed the principles of coproduction in their services for people with mental illness or learning disabilities, in both residential and floating support settings. This is being done through learning sessions on coproduction and then in turn implementing Time Credits programmes in each service enabling users and staff to collaborate on how the Credits are earned and spent. A Time Credit is a physical note that is earned for an hour’s contribution to a service or community and can be spent on an hour of activity such as an art class or museum visit.

Our – and Look Ahead’s – ambition is for Time Credits to help transform the way that users of services are involved in decision making and how the service is run, particularly in decisions about their day to day life and support . Time Credits are already incentivising many more service users to get more involved in their service, with participation in service user meetings rising from 2 to 15 in one service over 4 months, and a wide range of new activities starting up based around people’s interests resulting in over 500 hours given to services HSC3and peers and almost 200 hours spent in services and across London. People are earning credits for activities ranging from gardening and activity group setup to DJing at events, arranging social outings and setting up a peer-led women’s support group. Spending has included trips to the Tower of London, Museum of London and going climbing as well as accessing a range of new internal activities.  

Alongside the outcomes for service users Continue reading