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).’
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.
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!
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 an age of austerity, a great deal of time is necessarily spent on identifying what councils and the NHS can no longer do. But that makes it vital that we are also clear on what they can do. An asset-based public body 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.
Despite cuts, we can and must create asset-based areas. The asset-based area:
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.
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.
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.
Uses the Social Value Act principles by default in all contracting and grant making.
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.
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.
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.
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’.
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’.
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.