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.
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.
Catherine, who lives with her Shared Lives carer Liz in Wales, told her moving story at our recent event at the Wales Government in Cardiff, hosted by Julie Morgan who is AM for Cardiff North and joined by Rebecca Evans, the Minister for Social Services and Public Health. The event launched the work of my colleagues Babs and Lois who are developing Shared Lives in Wales for older people and as a health service, amongst other exciting work. Catherine told us first about the mother and baby service which she experienced as a new Mum aged 18 and then the support she received through Shared Lives via the Gwynedd Adult Placement scheme.
My OLD life
My name is Catherine and I am 27 years old. I am here to tell you how my life has changed over the past 9 years…
The story starts when I was in a mother and baby placement when I was 18 years old.
The plan was that the placement would support me to learn new skills to enable me to live independently and be better equipped to look after my Son.
THIS DID NOT HAPPEN. The Family that I was living with made me feel that I was not a good mother, nor was I able to take care of myself. They used to write things about me every day but did not tell me what they were writing. I lost all my confidence I also lost a lot of Weight. I went down to six stones while I was living there. I was not supported to use the washing machine, tumble dryer, learn to cook; they didn’t take me shopping so when I went to the shops I would just waste my money. I asked for help, they told me that they are not there to help me they are there to report back to social services about how I was doing. I felt so low that I didn’t take any pride in myself. I was also suffering from Depression. I had an appointee looking after my money so I didn’t know how much money I had. I felt that they had taken over my life. I was told that I didn’t need an advocate so I didn’t have anyone to support me at this very difficult time in my life. I was not treated as part of the family.
I felt that they saw the learning disability and not the person that just needed a little help.
I feel that the lack of support I received contributed to my son being taken away from me and adopted.
When it was time for me to move on I was asked if I wanted to go to an adult placement. I was a bit worried that it would be just the same, as I didn’t know what an adult placement would be like.
My NEW life
When I first came to live in an adult placement I didn’t know how to take care of myself. I had no friends. I didn’t have a job. Liz sat down with me and we made a plan together. Liz asked me what things I would like her to help me with. This made me feel happy as I felt that someone was asking me what I wanted. We made a wish list. Liz supported me to learn how to do things. I took control of my money so no longer needed an appointee, I just need some support from Liz now. I learnt how Continue reading →
I’ve never read the wonderfully titled Last Quango in Halifax blog before by Rob Mitchell (@RobMitch92) but I will be from now on. The story of ‘Elsie’ is the most telling (and saddest) illustration I’ve read of what we get so wrong in our highly selective view of which risks matter and what we should do about them. Thanks Rob. https://lastquangoinhalifax.wordpress.com/2016/09/24/someone-to-safeguard/
This is a guest blog from our Executive Director of Support and Development Anna McEwen who writes:
Yesterday I visited Paula and Ian who live in Beckton, London. It was like going to visit old friends as I’ve known them for many years in different roles.
Ian moved in to live with Paula and her family in 2000 and Paula has gone through many incarnations of regulation including registering as a small care home before joining Newham Shared Lives scheme when it was established in 2009. When Ian first moved in, after his former foster mother died, Paula’s children were both under 5 – now her daughter is a student nurse and her son has just begun a scholarship playing basketball in America.
It was wonderful to see them both, but this time the purpose of my visit was to hear from Ian’s health journey of the last year.
It was June 2015 when Ian began to feel unwell, he had a high temperature and wasn’t eating – something that is really unusual for him. So, Paula took him to the GP who initially thought it was a viral infection. When he got no better, Paula took Ian back to the GP who sent him for blood tests. Still no improvement and Paula knew something was badly wrong by now, Ian was tired, lethargic and his temperature kept spiking. The next time he went back to the GP he was fast tracked to hospital where he underwent tests in A&E before being admitted. He ended up staying in hospital for one week during which time he had an endoscopy operation to unblock a bile duct. Paula spent all day every day in hospital with Ian who told me it was a bit scary being in hospital. Paula was there from 9am until 8:30pm each day so that Ian knew that he just had to sleep for the night and then she’d be back there for him.
Once the operation had been done, Ian initially felt much better and they both had a sense of relief. Unfortunately, they were then told the news that the tissue removed in the operation and sent for biopsy was cancerous.
For the next couple of months, Ian went through a number of tests and scans and was then referred to a specialist at the Royal London hospital. Paula talks about the consultant being a wonderful man who always took the time to talk to Ian, explain things to help Ian understand and then performed the major operation to remove Ian’s gall bladder and tip of the pancreas. Again Paula spent each day in the hospital with Ian throughout the 10 days he stayed there. He was initially very weak after the 5 hour operation and spent time in intensive care, but the hospital put in extra support for Ian in those early days.
Ian was also visited and blessed in hospital by Father Bob, from Ian’s local catholic church, who has been supporting Ian and other disabled people to visit Lourdes each summer for the last 15 years.
I really enjoyed reading this story from Shared Lives South West which has just received a very positive inspection from CQC. We think that one of the ways in which Shared Lives is different from other approaches is that it allows people who have previously been seen only as ‘in need’ and ‘vulnerable’, to contribute to a household and their community, as well as receiving the support they need.
Nick’s journey- from being cared for to being a carer!
Nicholas Richards is 26 years old and has suffered from an anxiety disorder from an early age when he developed a school phobia and, as a result, he missed all formal education after the age of 11. This was not picked up by social services as the family moved to Spain and by the time they returned he had been out of the state system for several years. At the condition’s height he was reclusive for about four years, living with his father and barely leaving the house or his bedroom.
In this time he lost or never developed a lot of simple, fundamental social skills and communication and found being around people close to impossible. He experienced paranoia and phobias about people and being outside.
In September of 2010 he was referred to a doctor by a family member and began the process of rehabilitation with a match to a Shared Lives South West carer in Dawlish. During this time he has worked incredibly hard and, with nurturing support from his carers, he has turned his life around….
Read the full story here: http://sharedlivessw.org.uk/nicks-journey-from-being-cared-for-to-being-a-carer/
The PSSRU team at Kent University have published their research into Shared Lives for older people, which you can find in Working with Older People, here.
Whilst the study was fairly small (150 people), the results were overwhelmingly positive. They say,
‘Shared Lives would appear a good “fit” with the on-going personalisation agenda .… Most of the respondents cited support from Shared Lives as the reason they felt more independent, due in part to being able to exercise choice and control in a home environment. A surprising number of respondents also specifically highlighted the positive impact Shared Lives had on their mental health and emotional well-being which was exclusively linked to the supportive relationship they had with the Shared Lives carer.’
Being matched with a consistent Shared Lives carer with whom they could have a long term relationship (either visiting regularly for short breaks or living with their chosen Shared Lives carer as part of the household) this increased opportunities for social contact, with “never feeling lonely” explicitly mentioned as a benefit. People regularly described this as life changing: For one participant, Shared Lives means “to have company around me, friends are my life.”
Whilst it was important to people to be able to take part in activities, it was equally important that they were doing them with people they had chosen and now knew well. The authors quote research that shows, ‘Well-being in later life is less about what older people do, but rather of who with and how they feel about them (Litwin and Shiovitz-Ezra, 2006).’
People in the study said:
‘Every day I have activities to go to. Without the support of the family I live with I wouldn’t be able to do this. (female, 68 years old, long-term placement).’
‘Because I have difficulty walking am house bound and the weekly outings give me an opportunity to be in the outside world again. (male, 83 years old, day support).’