Latest Shared Lives news

Cathy Newman of Channel 4 News met a Shared Lives household: https://www.youtube.com/watch?v=wb_DyYvE9zE

We are now processing the responses to an opportunity for health commissioners in England and their partners to express an interest in our £1.75m funding opportunity to develop Shared Lives as a healthcare services in partnership with NHS England. See our reports on Shared Lives and healthcare and on Collaborative Healthcare.

The Shared Lives Incubator social investment programme developed in partnership with Social Finance and Community Catalysts is investing in Shared Lives in three areas.

Chris’s move to our Shared Lives home

Yesterday I published Chris’ own account of his move into a Shared Lives household. Here, Alison, his Shared Lives carer, very kindly shares her story. Alison writes:

Before moving here Chris had lived for 19 years in a small residential home since his teenage years. It was an excellent home where he was well supported and enjoyed a very good relationship with staff and some residents. I wondered how he would adjust to life in a small family home and whether he would miss having a big group of people to keep him company and support him. It was daunting to know that a team of 12 carers was being replaced by just one. Me!

One year on and I can truthfully say that Chris has never looked back. Shared Lives can often change people’s lives suddenly and dramatically for the better, but at other times it makes a less obvious but no less important difference. For Chris I would say it has been a gentle shift from a subtly institutionalised life to one as an ordinary member of an ordinary family doing ordinary things.

He seems to feel a greater sense of freedom – he makes more choices, comes and goes as he pleases and stays at home alone for agreed periods of time. He seeks permission much less and more often tells me what he is going to do instead of asking. He is encouraged to make his own decisions even if I don’t agree with them – this is much harder for me than it is for Chris! We have many conversations about honesty – Chris gets better at telling me the truth rather than just what he thinks I want to hear, and understanding that if I don’t like it then that is my problem and not his!

His social circle has expanded dramatically – he has met Continue reading

My Move to Shared Lives

Chris has very kindly shared his story of moving into a Shared Lives household from residential care. Thanks Chris! Tomorrow, I’ll post Shared Lives carer Alison’s account of the same move. Chris is with the Birmingham Shared Lives Scheme and he writes:

Moving from residential care to Shared Lives

When I lived in residential care I did have independence but other clients came first, I was too independent for them.

When the social worker did my annual review I only needed 23 hours support per day not 24 hours. There was some meetings with the social worker and later an advocate, we talked about good and bad points of residential against Shared Lives. I was worried about moving to a house with just a couple – what if they argued or were too much into each other and I got ignored. But in the end Shared Lives won out as there would be more independent things I could do what I couldn’t do in residential.

First I went to visit a Shared Lives carer twice but at that time he wasn’t ready for a permanent arrangement. Then Andrew who works for Shared Lives told me about Alison, then it was a visit to see if I liked her then a stop overnight. Then a final meeting to set up for moving.  At first I walked the dog sometimes. I sorted out my bedroom, my bus pass, medication and medical treatment. I got to know the area and met Alison’s family and friends.

How is Shared Lives different from residential care?

There are less forms to fill in. I am more independent. 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 how many staff and clients were going. In residential I couldn’t go out to a club without having to do a risk assessment and care plan. Since I moved in I think we have been on 9 trips. I also stay with Sylvia and Carol for respite, they are Shared Lives carers too.

I would say it is more of a family. I do get on with everybody – I get on very good with Pilui (Alison’s husband), I get on with Alison very good, I would say more of a closeness.

In residential I had to take my tablets exactly 8am and 6pm, Continue reading

The Asset-Based Area

I’ve had lots of response to the blog below about the idea of an Asset Based Council, including two suggestions for further points from ABCD expert Cormac Russell:

  • The council willing to relocate authority to citizens.
  • Make neighbourhoods the primary unit of social change.

Donna Hall, CEO at Wigan Council, points out that The Wigan Deal includes all of the suggested points except Time Banking and says, “It really works! 83 percent of citizens agree with The Deal, we have saved over 100 million and we have the happiest Council staff in the UK.” The Deal was flagged for me after we published the Joint VCSE Review, as a strong example of implementing a number of the recommendations.

Angela Catley of Community Catalysts flagged the link to: the Enabling State published by the Carnegie Trust http://www.enablingstate.co.uk/resource/a-routemap-to-an-enabling-state/

A number of people asked why not also have an asset-based NHS, which of course I entirely agree with. It would really only be asset-based if it was the whole area and not just one body within an area, but I think that all of those points would apply to the asset-based CCG or NHS Trust. Perhaps another one I’d add to include the health context would be that the area would measure wellbeing and resilience, not just mortality and medical outcomes. I’d be interested to hear NHS colleagues’ views on that. Here are the original suggestions again, with those additions woven in:

The asset-based area (or council, CCG, NHS Trust, Health and Wellbeing Board, New Care Model….):

  1. Has a living map of the area’s resources and works with the whole range of assets: state and private money, social action, community groups and charities, services, private sector and enterprise, buildings and land.
  2. Actively relocates authority to its citizens, seeing its role as enabler and facilitator: equal partnership is the default working mode and all of its staff and those of its partners are trained in asset-based thinking.
  3. Passes ‘the connection test’: challenging all service interventions to build people’s resilience and social connections and investing in models which can demonstrate this added value.
  4. Uses the Social Value Act principles by default in all contracting and grant making.
  5. Builds and sustains social and community enterprise as part of ensuring that it has a wide range of asset-based support models, also building partnerships with local business.
  6. Builds mutualism and shared ownership, including through use of the Localism Act, and increases year on year the proportion of the public service workforce who have current and recent lived experience of using those services.
  7. Thinks in terms of neighbourhoods (not statutory boundaries) and invests in connecting people within an between those neighbourhoods, through models such as Asset-Based Community Development, Local Area Coordination, Circles of Support, Shared Lives, Homeshare and time-banking.
  8. Aims to increase the proportion of its resources invested in prevention and early intervention year on year, whilst insisting that every service intervention is ‘future focused’.
  9. Measures all forms of social action including volunteering and seeks an increase year on year, investing adequately in this rather than seeing volunteering as ‘free’.
  10. Has a unified set of outcomes measures for all services, which measure wellbeing, resilience, independence, peer support and self-care for people using services and their families and carers.

 

 

The asset-based council

There is growing realisation that councils cannot do many of the things that we have been used to them doing. As their budgets are cut, and cut again, many council managers spend a great deal of their time deciding what they cannot do. But in an age of austerity, what do we think that councils can do? We’ve had the ‘co-operative council’. Perhaps it’s time for the asset-based council.

An asset-based council has no customers, only citizens. It has no providers, only partners. It is responsive to need, but looks always for capability and potential. It is confident in the things it can do and the difference its people’s skills and expertise can make, but it has the humility to recognise what it cannot do: fix people or communities.

An asset based council:

  1. Has a living map of the area’s resources and works with the whole range of assets: state and private money, social action, community groups and charities, services, private sector and enterprise, buildings and land.
  2. Sees its role as enabler and facilitator: equal partnership is the default working mode and all of its staff and those of its partners are trained in asset-based thinking.
  3. Passes ‘the connection test’: challenging all service interventions to build people’s resilience and social connections and investing in models which can demonstrate this added value.
  4. Uses the Social Value Act principles by default in all contracting and grant making.
  5. Builds and sustains social and community enterprise as part of ensuring that it has a wide range of asset-based support models.
  6. Builds mutualism and shared ownership, including through use of the Localism Act, and increases year on year the proportion of the public service workforce who have current and recent lived experience of using those services.
  7. Has a community development worker (e.g. a Local Area Coordinator) for each identifiable neighbourhood and invests in connecting people through models such as Circles of Support, Shared Lives and Homeshare.
  8. Aims to increase the proportion of its resources invested in prevention and early intervention year on year, whilst insisting that every service intervention is ‘future focused’.
  9. Measures all forms of social action including volunteering and seeks an increase year on year, investing adequately in this rather than seeing volunteering as ‘free’.
  10. Has an active and growing time bank.

Continue reading

Big worries and small acts of kindness

Our message on the EU referendum to Shared Lives Plus members and anyone else changing the world one small step at a time:

The changes which are happening around us can feel huge and abstract, but the anxiety they can cause can be very real. The saddest thing I’ve heard this morning, is parents who are immigrants to this country, going to their child’s head teacher, to ask if their son or daughter is still allowed to attend their local school now. The most inspiring was this message from the CEO of South West Yorkshire Partnership NHS Trust: “To all my staff from the EU – you are as much a part of our team today as you were yesterday, valued & cherished in the NHS.”

We didn’t comment on the EU referendum and I’m sure our members’ views on it were just as divided as the country’s. One of the most disappointing aspects of the various kinds of political debates happening in recent months is that finger pointing and disagreement felt as if it was fast becoming anger and worse. In fact, we all voted knowing that little was certain either way, and doing what we hoped was best.

Perhaps we can do little to influence the huge political changes which are set in train both in this country and in Europe, which are too often driven by forces and ambitions which have little to do with our day to day lives. But life goes on and it is at the human level of day to day living which we can and do make a difference.

So we will do what we always do: walk alongside our members to support them and cheer them on as they share their homes and lives, carrying out the small, life-changing acts of kindness and togetherness which make this such an amazing movement and which help to build communities and a country in which we all belong.

In the coming months, we will be particularly keen to hear from members who face worries or challenges arising from any of the changes yet to happen and we will do everything we can to support you and help you to have your voices heard. In the meantime, thank you to everyone involved in Shared Lives and Homeshare for all that you do to make the UK a friendlier, happier and more inclusive place to live

The Shared Lives Plus team.

Go Shared Lives!

This is a guest blog from Michelle McDaid, a policy manager at the Department of Health, who has often worked behind the scenes to develop policies which help make the Shared Lives model a possibility for more people. Michelle’s blog has also appeared on the Dept Health website:

On a Friday in April I had the privilege to visit a Shared Lives family in Bexley. Through Shared Lives Plus I was put in touch with Bexley Council and the brilliant Catherine Nairn who is the Manager of the Bexley Shared Lives Scheme.

Going out to visit Shared Lives is something I have wanted to do and experience for a very long time. But like lots of things, I kept putting it off. Pressure of work and all that!!  I work in social care policy at the Department of Health. One of the areas we look at is improvement in the quality of care, for both those using it and for the staff who work in it. Over the years I have worked very closely with Alex and Mark at Shared Lives Plus, on Shared Lives issues. But I have to confess that I never took the time to go out and meet a family.

The Department runs something called Connecting. It’s a ‘back-to-the-floor’ scheme to help staff connect to the experiences of patients and people using services. As a ‘policy maker’ it is vital for me to see in action the people who provide and use the adult social care system. I couldn’t do my job without doing so – which is why I jumped at the chance to go out to Bexley.

I visited the council offices first where I met Catherine. I also met Caroline Maclean Head of Service, Complex Care and the Council’s director of adult social care Tom Brown and Mandy Grandini who works alongside Catherine.

We had a long and extremely interesting chat about Shared Lives. I learnt all about the Scheme in Bexley – all about the vetting process – how the Scheme is set up and what the aims of the Council are in this area. It was incredibly uplifting to hear of the resource and support being put in to such an innovative and amazing scheme. I saw the most brilliant short film about a Shared Lives family. I have to say if anybody saw this, then personally I think they would be in no doubt of how this scheme can bring so much support and help to the person being cared for.

After our meeting, Catherine and I set off to meet the Shared Lives family. I have to say I felt slightly concerned about imposing myself on this family but I needn’t have worried. I was met at the door by the Shared Lives carers (who knew I was coming by the way). They were so lovely and friendly and welcomed me into their beautiful home. The couple look after three people with learning disabilities or other support needs. The two people I met were in their mid-fifties or early sixties. One had been living there nearly a year and the other person had been with the family for 16 years.

I met the first person who was a little bit shy at first, but after a short while came down from his room and joined in our conversation. A short while later I met the second person, who had been out volunteering which he does a few times a week. He began telling me Continue reading

It’s still time to Transform Care

We are involved in lots of very promising work at the moment around Transforming Care: the work on which NHS England is leading to get people with learning disabilities and mental health problems or other ‘complex’ or ‘challenging’ needs out of medical institutions and into ordinary homes in the community. The programme is also aiming to reduce significantly the number of people who go into such institutions when they have mental health and other crises.

So far the various post-Winterbourne View scandal workstreams have been a great (ie bottomlessly depressing) example of what can happen when the full might of government and the wider system suddenly throws some of its best leaders, hundreds of millions of pounds and countless staff hours at a problem, backed up by all the pressure of targets and ambitious timescales: a target setting industry springs up, there are huge amounts of activity, much of it happening under almost intolerable stress, but the best spin you could possibly put on the results of several years of this is a gentle decline in the numbers of people in ATU. Some people have left, whilst others have taken their places. Where there is a bed, it will be filled. Collectively, we did lots of perfectly sensible things, but missed several essential things, without which real change could not happen.

Most importantly, ‘we’ – people working in leadership roles in the sector – turned out not be the right people to be making change: we didn’t have the courage or imagination to cede our leadership roles and power to people with learning disabilities and their families because there was neither the time nor resources to do so in our important and urgent work. Except that it turns out there was all the time in the world, because here we are five years later pretty much still on the starting line, and all the money we needed, because we have spent millions. People with learning disabilities and their families would, I believe, have led us slowly and haltingly in the right direction, with results no worse and potentially a whole lot better.

I’m optimistic that the work we are now doing with NHS England will get real results. We have had really strong interest from CCGs who are expressing an interest in the NHSE funding to demonstrate and scale up Shared Lives as a health intervention, not just for people with learning disabilities but lots of other groups as well such as people with mental health problems and older people leaving hospital. We are also developing an alliance contracting model in which we hope Shared Lives provider organisations and other like-minded providers with different models will work together, with the involvement of advocacy and self-advocacy organisations, to put a different offer in place. And we are a strategic partner in the IPC programme, with funding to support the IPC areas to think differently about providing personalised health care in general and Shared Lives specifically.

We’re doing this work because one of the intractable problems at the moment is that pared-down commissioning teams can see that new models might be better, but don’t have the capacity, expertise or relationships to develop them. Providers with good models can’t develop new models without a commissioner helping to define what is needed and in a position to purchase it. Commissioners are reluctant to block purchase care in any case: they are aware they are supposed to be helping individuals to make very individual choices. But without new models of care to choose, individual choice remains theoretical, so we have the worst of both worlds: neither old-style commissioning using its buying power to demand and invest in a better model, nor a functioning marketplace in which personal budget holders can find providers with something they want.

Our work will bring Shared Lives as a new model of care to many more people, but Shared Lives of course cannot be the only solution, and making it available doesn’t on its own shift the current power imbalances. Without changes at a deeper level, I worry that care will remain untransformed for too many people. Here are four changes it is not too late to make:

  1. We need a contracting model which pays for outcomes not time, which any commissioner and provider can use. Where care is paid for by the hour, the incentive for providers is to maintain, not reduce, extremely high levels of support, even where people no longer need it and the ‘care’ is now getting the way. Our alliance contract model will attempt to build this kind of contracting model and our outcome measuring tool will be one way in which those outcomes can be measured, but models of that kind need to pushed out right across the system.
  2. We need to build marketplaces in which people who are receiving care and their advocates can share limited information with suitably vetted providers, so that providers can start making offers to people who have a personal budget or Personal Health Budget, with the support of brokers. This will require investment but save more money than it costs.
  3. We need to build proper scrutiny into the system, led by people and families. Rather than the patchy system of Learning Disability Partnership Boards which work only when commissioners choose to engage with them, but are essentially an optional extra, commissioners and clinicians who are currently unaccountable must be obliged to report regularly on progress to a group led by self-advocacy and families’ organisations. This will focus their minds and make failure and stasis less of an option.
  4. We need ways to move resources from the state system into support for people who live in the community or with their families, to avoid the current cliff edge where a family in crisis can be told “there’s’ no money” one day, only for thousands of pounds a week to be found the day after the family collapses, to pay for institutional care. One way to do this would be for commissioners to be obliged, whenever funding is identified for emergency or medical care, to offer that money first to the existing provider, or to family carers, for them to draw up an alternative spending propose to sustain family or community care. Another would be for individuals to be able to share in savings made when a medical care package is replaced by community care, to build up a contingency fund to spend when in crisis.

Continue reading