Shared Lives in Moray: David

In the this second guest blog courtesy of Moray Shared Lives in Scotland, the Shared Lives team writes about support for Dave:

Dave has a diagnosis of dementia. David and his wife were told about Shared Lives by their social worker. David has a great sense of humour and enjoys socialising and getting out, so it seemed an ideal choice for both David and also for some respite for his wife.

As his condition deteriorated, another carer came on board to support the family and we incorporated some more day support and also regular overnight respite. He is very car sick, so planning between both carers for hand overs was all important, but after a few weeks, all was settled and going very well.

Dave loves going along to both carers and enjoys the social aspect of going out walking and meeting people in small groups. The Shared Lives Team are now well known locally and often meet up to play pub games or beach boules together. Dave really enjoys being part of his local community and chatting to everyone he meets. He is known for his love of Cullen Skink soup and Indian food! He even has his own dog at one carers home and is responsible for it when they go out walking together.

Dave’s wife is very pleased with the flexible support and has advised that she does not know what they would have done without it. With his condition and the extreme car sickness, staying in a small seaside town is beautiful but very restrictive.

The Shared lives model of care allows the luxury of regular time spent together with a carer, and in turn special support and relationships are possible.

Shared Lives in Moray: Alex

In the this guest blog courtesy of Moray Shared Lives in Scotland, Shared Lives carer Karys talks about supporting Alex:

Alex has dementia and has been using the Shared Lives service once a week since March 2016. However, at the request of his family, Alex recently started attending twice a week as they truly value the service and comment on how stimulated he is when he gets home from his time with me.

alex 4

Part of the success is down to the pairing between Alex and me. I have been able to bring an otherwise quietly spoken, man of few words out of himself. His son John tells me the only time he willingly goes into the shower, is when he tells his Dad that Karys is coming round today.

I try to do different things each week as far as possible, but whatever we do, I take lots of photos. I send the photos on to Alex’s sons, which they value as a tool to jog his memory. Activities range from going to the library, mostly for books on fishing, collecting driftwood on the beach, spending time at the seals, picnics on the beach, adult colouring, visits to garden centres, museums, fishing heritage centres, card making, going out for lunch, to name a few. Alex loves snooker, which turns out to be the only sport he can still follow, so we watch tournaments on TV. However, this week I took Alex out to play pool which he did after a bit of persuasion. He loved it and I think he surprised himself on how capable he was.alex 2

Alex is still physically fit and loves to get out for a walk. For such a quiet man, he loves the social side of getting out and meeting people. One of the things he did that his family can’t quite believe, was to dance with me at the Shared Lives Christmas party. He took a bit of convincing, but enjoyed himself once he was up. Continue reading

The shelter of each other

Our colleagues and members in Northern Ireland hosted an event for commissioners exploring how Shared Lives could be developed as a new form of short breaks, day support and home from hospital care for older people.

We are grateful to Fionnuala McAndrew of the Health and Social Care Board who helped convene and kick off the day and to Mary Hinds, of the Public Health Agency, who summed up beautifully, drawing on an Irish proverb I’ve not heard before: We live in the shelter of each other.

I’d be willing to bet that that rings true for you as much as it does for me. For years now, the ideal living situation through the eyes of long term care and support services has been independent living. It’s not a bad goal, particularly when contrasted with institutional alternatives. But that language doesn’t tend to figure in our own descriptions of what we dream of, unless or until our independence is at risk. When people describe happiness, for most (admittedly not all) of us, it involves having people  we can rely on. In other words, we dream of interdependence, not complete independence.

This can be an uncomfortable idea for long term support services which are wary of ‘creating dependence’. Few of us would want to be dependent on a service. But perhaps it is not so much that becoming dependent is ‘inappropriate’ to support relationships, but that the way we construct support relationships can be an uncomfortable fit with our naturally interdependent nature. People working in social care often find their roles put strict limitations on the definition of ‘care’ and are too rushed and impersonal to feel ‘social’. This incompatibility between the human nature of both people who give and those who receive long term care is at its most stark when the intimacy of personal care is carried out by a succession of strangers.

Shared Lives is not about dependency in the pejorative sense and for some people it is very much a stepping stone to getting their own place. Half of the people using Shared Lives Continue reading

What could be

Finally, social care is being recognised by our political leaders as vital to our nation’s health and wellbeing. All parties now recognise that ordinary people can be called upon to pay vast amounts towards their care, in contrast to our free-at-the-point-of-need NHS. There is public recognition of what social care is, for the first time. But now we need to visualise what it could be.

Our annual State of Shared Lives Sector reports give a glimpse of a possible future. They have consistently shown that Shared Lives is growing in England, and now we have evidence of new growth in all four home nations. They have also highlighted the difference Shared Lives makes to people’s lives. Many people who might otherwise have lived on their own or in a care home are finding a settled home with their chosen Shared Lives household. Meanwhile, a new group of older people and others who live with their families, but need regular overnight or daytime breaks, get those breaks from visiting their chosen Shared Lives carer, often matched with them because they both enjoy the same activities, rather than struggling with the stress and disruption which more institutionalised breaks services can bring. People live well and sometimes achieve the impossible.

This year our annual report for England (as reported in Community Care) paints both an encouraging and concerning picture. In previous years, Shared Lives has grown strongly, despite the cuts which are shrinking all other forms of social care. The net growth has been about 1000 additional people per year. This year, the number of people using Shared Lives in England has grown by around 580, to just under 12,000 people, around half of whom are living with their Shared Lives carer, and the other half are split between short breaks and daytime support. Look at the numbers of people using Shared Lives by region, however, and it is clear that there is a widening gap between those regions which are accelerating and those which have in previous years been stalled, and are now starting to slip back. So the regions which are growing, have added over 1,100 additional people. Half of this growth comes from the North West, with London and the South West splitting most of the rest. There are signs of growth in the North East, which has been one of the smallest regions and where we are working with directors’ association ADASS and the region’s Shared Lives schemes and partners to create a regional hub. The South East and Yorkshire have seen significant reductions, however, after having previously been regions which were using and developing Shared Lives strongly. The East and West Midlands remain essentially unchanged and the East of England, which has been the smallest region for some time, is now falling. Meanwhile, the model is growing in Scotland, Wales and Northern Ireland and we have embarked upon ambitious new programmes in each nation, with strong support from the Wales Government in particular.

With so much news about cuts and the crisis in the NHS, it is easy to believe that the future of public services will just be less of what we have now. But we believe Continue reading

What helps and hinders change?

We recently published a very brief guide to six linked innovations, to show how they can work together to create whole-area change. Here is my Guardian blog. Thanks to Community Catalysts, Local Area Coordination, Community Circles and Helen Sanderson Associates who were the partners with Shared Lives Plus.

The five organisations involved also pulled together this list of what enables and what gets in the way. We’d be interested in your thoughts on these. I’ve mentioned below a couple of areas doing inspiring work on this agenda  – but I’d be interested to hear about others I’ve missed.

Enablers

  • Applying asset based thinking to the whole area: the new ‘core business’ rather than series of ‘pilots’ eg Wigan, Thurrock, Bracknell Forest
  • Strong coproduction infrastructure including ULOs, self-advocacy groups, peer support groups for people with specific conditions
  • Effective roll out of Direct Payments and personal budgets including ISFs, with widely available information, advice and brokerage services which are also accessible to self-funders; minimum red tape approach to spending individual allocations; people supported to pool their individual resources.
  • Multi agency strategic planning with a focus on wellbeing as the primary goal, expressed through cross cutting aims eg reducing loneliness, increasing social connections and resilience, reducing mate and hate crime
  • A culture of shared responsibility, and a shared goal to reduce dependence and customer service culture eg Wigan New Deal
  • Strong VCSE infrastructure which is inclusive of all kinds and sizes of not-for-profits including small community enterprises
  • Funding including social investment for double funding and innovation. Access to local or national innovation funds.
  • Consistent use throughout area of effective measuring tools including ASCOT, POET; use of evidence and data to facilitate conversations with citizens about change.

Barriers

  • Cuts to public service budgets and different approaches to managing those cuts
  • High levels of inequality and lack of inclusion and social integration
  • Strategic goals defined centrally/ top down and overly focused on the financial stability of the acute end of the system, or divided by condition group, rather than focused on outcomes and cross-cutting goals
  • Difficult local politics preventing risk taking and decommissioning what doesn’t work.
  • Lack of commissioning capacity and skills; tendency to commission largest organisations to reduce transaction or unit costs regardless of cost-effectiveness of models.
  • People prevented from making real choices by limited or filtered information about range of support and services; or by unnecessary rules around the use of public funding and personal budgets. Provider lists which exclude new entrants and start-ups.
  • VCSE sector under-developed or dominated by small number of large organisations; VCSE infrastructure organisations unstable or unsuited to current environment.

 

 

 

Person Shaped Support

 

Lesley Dixon is Chief Executive of PSS (Person Shaped Support) which has a long history of social care innovation and is one of the leading independent providers of Shared Lives services. PSS has just published a report on the outcomes and costs of its Shared Lives support, which includes powerful personal stories alongside data which should interest many people working in the sector. Lesley writes:

Social Impact Reporting is a big priority for us. At the end of each year, we make it our business to take a detailed look at what works, what difference our services make, what is cost-effective and ultimately whether we are doing any good for the people we work with.

We recently published our first Social Impact Report for Shared Lives and TRIO,  which looks at the fantastic achievements made by our Shared Lives schemes across the UK; in Merseyside, Wirral, Manchester, Wales and the Midlands. The report includes information on the people we work with, the pathway they follow when they come to the service,  the outcomes we support people to achieve (including case studies) and what our service-users think about the service. It outlines some cost-benefit analysis information, looking at the value of our Shared Lives projects when compared with other, costlier forms of care in the areas we work in, and also looks at some of the innovative work being done with our TRIO project in Wales, the hospital-to-home work we are trialling in some of the schemes, and our work with Shared Lives Plus on the My Shared Life tool.

Perhaps our biggest finding from this report is around the savings our scheme can make to the public sector. We found that Shared Lives is 51% cheaper than residential care and 35% cheaper than supported living. This means that on average, a Shared Lives Placement at PSS would represent an annual saving of £23,491 per person, compared to if they were to be placed in residential care, or an annual saving of £11,922 if they were placed in Supported Living.

Whilst there are some really good findings and inspiring case studies in the report, we know there is more we can do to keep getting better.  We plan to use the My Shared Life tool from Shared Lives Plus to help us manage impact on an ongoing basis, as opposed to a reflective report at the end of each year.  This will help us ‘course correct’ where we know that some of the things we are doing could be more effective or where they aren’t working.  We also really want to embed some measures which can help us demonstrate that what we are doing is high quality (such as some of the NICE Quality Standard measures), as well as some other tools which can help us establish baselines and demonstrate an emotional impact – such as people no longer feeling socially isolated or lonely.

 

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.