Latest Shared Lives news

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

Our £1.75m partnership with NHS England has been launched with funding awarded to five areas and their Clinical Commissioning Groups to develop Shared Lives as a form of 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.

Forever

Our annual conference is an opportunity to catch up with over 200 people who live Shared Lives and Homeshare and this year our Chair Richard Jones and I spent an hour talking with members about what life as a Shared Lives carer or local worker was really like for them.

What came across very powerfully is how precious Shared Lives is to those who live it and how fragile it can feel in a time of swingeing (and not always thought-through) budget cuts. One member said, “some people just want to know how much it costs.” They have “unrealistic expectations and think our spare rooms are ‘vacancies’ – if it wasn’t for Shared Lives Plus, the model would be long gone”.

Shared Lives is precious because “it replicates what happens in a family. It’s about disabled and non-disabled people living together and people of all ages. I shared my house with an 18 year old and an 80 year old, but the 80 year old loved being with younger people, so it worked”. Another told me, “My home is there for the person who lives with me, for as long as he wants it to be home – forever if he wants!”

Keeping the model alive and thriving is a fine balance: there has to be process and paperwork in Shared Lives, but it’s “a balance between doing and recording”. Through investing three to six months in recruiting and preparing the right people for the role (rather than resources being tied up in coping with high levels of turnover and disciplinary issues, as happens in some services), and then matching people carefully, people are allowed to make more human decisions about supporting each other: “in the care home the older person who lived with me had to wait until 6pm for her painkillers no matter how bad her pain was. Fear of doing something wrong takes over common sense and it becomes about protecting the service or the staff not the person. In my house she could have it when she needed it – she never asked to take more than the right dose.”

Shared Lives is deeply personal, and as one Shared Lives carer put it, you feel “personally accountable”. That’s a responsibility that everyone I talk to in our sector takes incredibly seriously. One of our jobs at Shared Lives Plus is to help people take on that responsibility safely and sustainably, with all the back that they need if things get tough, so that Shared Lives and Homeshare are there for people to choose forever.

More research needed

We are lucky to be working with some great academics at Kent University’s PSSRU, who are carrying out the first major research into the cost-effectiveness and impact of Shared Lives in recent times. You’ll find summaries of two ongoing pieces of research on our website with Cabinet Office funded evaluations of family carer support and mental health care coming soon. Kent University have also researched outcomes for older people and designed an outcome measuring tool which we’ve made available to all of our member organisations, and which is starting to gather a national dataset of information on the outcomes which people achieve in Shared Lives. A key feature of this tool is that enables people to say whether Shared Lives has a positive, negative or no impact on a number of areas of their lives and wellbeing. I think that being prepared for unintended negative consequences of care and health interventions is a key step towards getting a rounded picture of the contribution that support makes to living a good life. We’re confident that the tool will show the positive impacts that people tell us about constantly, but where there is variation, it will enable us to work with local organisations to improve.

We have just started a conversation with another university about Homeshare, which is also being evaluated by the Social Care Institute for Excellence as part of the £2m Big Lottery and Lloyds Bank Foundation funded national partnership. However, both Shared Lives and Homeshare remain under-researched compared to other sectors. Here are some of the things we’d love to know, or be able to prove, which are not yet being researched:

  1. What are the ‘preventative’ outcomes of Homeshare? How can Homeshare make the most impact upon people being able to live well for longer in their own homes?
  2. The cost-benefit of Shared Lives breaks and day support: most of the research at the moment looks at live-in arrangements, but this is only half of Shared Lives provision.
  3. What motivates Shared Lives carers? Some local organisations have a handful of Shared Lives carers, whilst others have hundreds. Shared Lives schemes appear to experience very small turnover of Shared Lives carers compared to other forms of care. We need to know more about who to reach, how to reach them and what best motivates people to take the huge step of becoming a Shared Lives carers, and to stop. We think we know, but it’s never been ‘properly’ researched.
  4. What impact does Shared Lives have on the rest of the household? We hear lovely stories from the children of Shared Lives carers: it would be great to collect more of their stories and understand their and other family members’ experiences and contributions in more detail.
  5. We know that matches can last a lifetime, but what factors make some matches last decades and what leads to the small number of matches which break down and what happens to people post-Shared Lives? There may be no ‘typical’ length of a Shared Lives arrangement: some people want to use Shared Lives as a stepping stone to their own place and others are looking for somewhere to settle down forever. What goes in to some matches being able to continue even when the individual develops complex health needs: the role of the Shared Lives household but also the local organisation and partner agencies?

James’ story

With thanks to the Shared Lives scheme and the household involved, below is ‘James’ story, which illustrates that with the right planning, investment and back up, Shared Lives can work for people who have been labelled ‘complex’ or ‘challenging’. We are keen to talk with colleagues involved in the Transforming Care agenda about the potential for Shared Lives as a route out of hospital for people with learning disabilities:

After a lengthy stay in a residential hospital for people with learning disabilities, James was discharged home with depo medication to help to control psychotic episodes. On his return home, James was abused by a family member. As a result, James was taken to a place of safety by the police. He was then given future support and accommodation options which included Shared Lives.

James decided that Shared Lives was a good option for him and was matched with a Shared Lives carer called Phil. Phil already had one person living with him in a Shared Lives arrangement and he also had a lot of experience. He had previously supported adolescents as a foster carer and was experienced in supporting people with ‘challenging behaviour’.

Phil supports James to experience lots of new things, including supported employment, independent travelling, grey hound racing and fishing. James went on holiday with Phil and his family and joined in with all that they did. They enjoyed this break together and it provided them all with respite from day to day life.

Whilst living with his Shared Lives carer, James’ depo medication was assessed and discontinued due to the risk of long-term side effects. His mental health deteriorated and he returned to having periodic psychotic episodes. When James is unwell which has been occasionally, he is readmitted to hospital, sometimes under section.

When James is well he lives happily with Phil. He has a clear support plan, with additional Shared Lives support carer input to enable Phil to take regular breaks. James knows this person well and her support is flexible, depending on James and Phil’s needs at the time. For example, sometimes she moves in so James continues to live at home when Phil goes away, which means minimal disruption to James’ home life. At other times James can go to her home, where she provides day support and overnight respite. James also has regular input from the community learning disability nurse and community psychiatrist.

James’ Shared Lives scheme worker is honest in saying that the Shared Lives arrangement can be challenging at times especially when James’ mental health deteriorates. But with the good support systems in place which are reassuring for James and Phil, both value the family life their share and neither could imagine James living anywhere else.

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.

Always compassion

I chaired the final session of a King’s Fund conference on co-production and the six principles of the Five Year Forward View today. Mark Doughty who developed “life changing” arthritis as a young man and is a senior consultant with the King’s Fund reflected on the difference between the kinds of relationships we take for granted in most of our lives – respectful, compassionate – and the relationships we have within ‘the system’, which can feel far removed from that. Initiatives like the late Dr Kate Granger’s “Hello my name is” campaign and the work of Andy Bradley and Frameworks for Change are attempting to bring the compassion back into what should already be compassion-focused fields of work, but too often aren’t.

Delegates suggested that the gap between the relationships we want and the relationships we have if we work in or are users of health and care services can often come down to time. As resources get tighter, time gets more and more pressured. Stress levels rise and even the common courtesy of remembering to introduce ourselves to people who might need intimate or highly stressful care from us can go by the wayside. Bradley’s work has a strong focus on self-awareness and self-compassion as the building block for compassion for others.

It could be argued that the current cuts to health and care service budgets make creating the time and space required for compassion simply impossible. But even within stressed and faltering public services there is an element of choice about what people at each level within the organisation choose to value and allot time to. Neil Churchill’s presentation on Always Events – practices which are identified jointly by people using services, practitioners and managers as being important to compassionate, effective care – showed that the case for compassion is often also the case for achieving outcomes and creating better value for money.

Deciding what is important and what to spend time on is of course about power. Part of the reason that the Hello My Name Is campaign was – shockingly – needed, is that there is a pervasive history of medical professionals believing in status and deference within the NHS. What felt important to ‘patients’ is not automatically felt to be what is most important to the services which they use and ultimately pay for.

We can experience the demands of ‘the system’ as all-powerful and inhuman, but in reality there is no ‘system’, there is only us, and what we choose to value and give time to. At present there are, though, more divisions between the different tribes of our public service world than there are shared beliefs around which we can build our public service sector into a unified movement. Our challenge – which is also the challenge of making co-design and co-production into Always Events in all public services – is to insist upon compassion and connection as always more important than anything else we might achieve, and when the pressure, stress and frustration mounts, to model it even as we fight for change.

 

Shared Lives together

It’s Shared Lives week, which this year includes a parliamentary reception hosted by Jonathan Reynolds MP,  Vice Chair of the parliamentary group on Autism at which we will announce the first group of local NHS trusts who will receive match funding and expert support to develop Shared Lives as a health service.

The theme of the week is Shared Lives Together. Lots of our communications this week will focus on what that means for the individuals directly involved in Shared Lives: people who feel now like they have a place in which they belong; households which feel that they have become richer for the experience: “Turns out this fills a gap which we didn’t even know was there”.

I’d also like to say something about the way that Shared Lives not only helps to build strong, resilient households, but can also play a part in strengthening the community around that household. We hear time and again about the friends which the individual living in a Shared Lives household has made, about their roles as volunteers, members of local groups and employees of local businesses. One Shared Lives carer told me that the reason she knew all her neighbours was solely because the young lady who came to live with her had a gift for making friends (the Shared Lives carer’s role often being to help her make good choices about those friendships). Another individual liked to help his neighbours in small ways like putting bins out, which they knew was appreciated from the number of Christmas cards he received each year. Small connections which can make a big difference to how a place feels like to live in.

That link between supporting individuals and community development, feels like it is one which needs to be made more often. Without making that link, you have “community care” which doesn’t enable people to feel part of a community, and community development work which inadvertently excludes people who have support needs and who can sometimes be amongst the most isolated.

Shared Lives is an illustration of how, with the right resources and back up, strong relationships within a household can lead to stronger relationships within the neighbourhood. Shared Lives households don’t just focus inwards but also reach outwards, to make the connections which start to feel like community, and which ultimately, help to build better places for us all to live in.

Outstanding

We were delighted to read in the annual Care Quality Commission report that the Shared Lives sector again is one of the highest performing forms of regulated social care, along with hospices. 92% of Shared Lives services inspected in 2015/16 were rated as “good or outstanding”, which is an increase on last year’s sector-beating results of 85%. Although the number of Shared Lives inspections is relatively small, the sector also has a remarkably high proportion of ‘outstanding’ services. I’d like to pay tribute to everyone involved in Shared Lives who works so hard to create this level of success in an ever more challenging world.

The Shared Lives results were bright spots in a report which also found health and care services overspending on their reduced budgets and which warned that adult social care may have reached the ‘tipping point’ beyond which it becomes unsustainable.

How much can we read into these results? When results are consistently this good, year after year, we feel confident in their accuracy, but of course you can’t put the value of people’s lives or their happiness into inspection ratings. There will always be anomalies between people’s experiences of social care support and what inspectors find when they visit. Some argue that the whole concept of inspection is outdated and it should be possible to judge the quality and safety of services simply by collecting and using the right data. Personally I think that both data collection and inspection have a role, and that both can be improved but that neither will ever be able to tell a complete story.

The CQC has started to attempt to narrow the gap between inspection report and experience by employing experts by experience in some inspections. To me, this is crucial: as people with learning disabilities at the organisation CHANGE have pointed out, the best way to ensure that everyone working with people with learning disabilities (and I think this is true for other groups) value and respect those people, is for all of us working in ‘the system’ to encounter regularly disabled people who are our colleagues and peers, not just our ‘customers’ or ‘clients’.

We are also trying to support the work of Shared Lives schemes and the inspectors, through our support for local services and initiatives such as a Charter which experts by experience (our Shared Lives Ambassadors) have worked on and a quality commitment scheme which will involve schemes talking with local people about what works and what they want to change. On the data side, we are rolling out an outcome measuring tool developed by Kent University which is using a web portal to provide schemes with their local data and us with anonymised national data.

If we can bring together all of these views of our sector: lived experience, inspection and data, then we will be able to say with ever more confidence, that Shared Lives is an outstanding example of social care.