We are calling time on our project working with NHS England, seven schemes and local CCGs (clinical commissioning groups) earlier than planned. Many Shared Lives carers support people with health needs already, and the project has resulted in some very positive examples of Shared Lives being used effectively by the NHS for people with conditions like brain injury, and who faced additional complex needs which meant that traditional NHS services were not working.
However it has been difficult to get the NHS to use Shared Lives as a new type of service to the level we hoped it would. We’ve asked independent reviewers to find out how Shared Lives works and hasn’t worked for people with health needs, and potential and current Shared Lives carers, and we will make this available next year.
We would like to say a huge thank you to everyone who’s worked so hard with NHS colleagues to create new ways of helping people with their health. Find out more.
Whilst this specific pilot project has come to an end, we are continuing to work with NHS England so that more people can stay or live with a Shared Lives carer as they manage a long-term health condition or while they recover their health, like Christina, who had breast cancer and used Shared Lives to return home.
In Barnsley, the Shared Lives scheme has been working in partnership with Barnsley CCG and people are beginning to benefit from Shared Lives in ways they haven’t been able to before.
Christina had been in hospital for an operation after a recent diagnosis of breast cancer. She received good news that the operation had been successful. Whilst planning her discharge, it was agreed that she would benefit from a short period of care whilst she recovered. Christina and the gentleman she usually lives with both have a learning disability, but he was going to be on holiday when she was ready to leave the hospital. On leaving hospital her goals were
As Barnsley Shared Lives scheme were one of the “Scaling up Shared Lives in health” sites, they had a partnership arrangement with the hospital and there was NHS funding in place so that Christina could choose to use Shared Lives upon discharge.
She was given exercises to do on a daily basis, every hour or so, to gently stretch her arms. Her Shared Lives carer Jenny supported Christina to do these exercises throughout her stay. As it was important to prepare for going back home, Jenny took Christina to do jobs like putting the bins out together. Keeping things ticking over at Christina’s own home helped her to prepare for going back to her own home after the stay with Jenny.
Christina will require radiotherapy treatment in the future which may potentially leave her with some side effects which might be difficult for her to manage in her own home. Due to the success of the stay with Jenny, there is a further option to refer back in to Shared Lives should the circumstances require this.
This example from Barnsley shows that although Shared Lives is mainly considered to be a model of social care, where Shared Lives carers share family life and support people with personal care and daily living, it can be the right kind of support for people during times of ill health too.
In many cases, the needs of people who are able to access NHS funding are not dissimilar from those who are able to access social care funding. Shared Lives is about so much more than providing the practical support people need during times of ill health; Shared Lives carers and their families are able to provide the emotional support alongside this. For many, this is what makes all the difference during their recovery.
If Shared Lives had not been available, Christina would have had limited options available to her.
Well doe to everyone in Barnsley who has helped to get this pilot off the ground and to the Shared Lives scheme workers and Shared Lives carers who have made new arrangements like this happen.
We know that the rollout of Universal Credit across the country has caused problems for many people in Shared Lives, so we’re pleased to publish a briefing which explores Universal Credit in full. It describes what people who use Shared Lives are actually entitled to, potential pitfalls and problems with the transition to Universal credit.
The document gives a call out for Shared Lives schemes, carers and people being supported to get in touch with their specific experiences of benefits experience, so we can continue to hone our guidance around the issue.
Please use the below guidance and information when encountering problems with Universal Credit and to challenge decisions and rulings of job centres. Pleaseshare the relevant information with Shared Lives carers
Tenancy Agreements for people supported in Shared Lives
Some people have experienced job centre staff saying that people using Shared Lives must have a tenancy agreement in place to apply for Universal Credit, but this isn’t right. Eligibility to receive the housing element of Universal Credit is based around whether an individual is responsible for paying rent. It does not matter whether the individual has a tenancy or a license agreement, as both specify that the individual has a legal responsibility to pay rent.
This is laid out in the Government’s Universal Credit regulations
Schedule 1 (Paragraph 2) defines a rent payment as
2. “Rent payments” are such of the following as are not excluded by paragraph 3
(a) payments of rent;
(b) payments for a licence or other permission to occupy accommodation;
(c) mooring charges payable for a houseboat;
(d) in relation to accommodation which is a caravan or mobile home, payments in respect of the site on which the accommodation stands;
(e) contributions by residents towards maintaining almshouses (and essential services in them) provided by a housing association which is– (i) a registered charity, or (ii) an exempt charity within Schedule 3 to the Charities Act 2011.
Section 25 (paragraph 3) of the Act specifies the reasons that people are liable to pay rent. It basically says that to be eligible an applicant must meet three conditions to get the housing element of Universal Credit
So if the individual meets the eligibility criteria for the housing element on Universal Credit and meets the above three conditions, they are entitled to receive the housing element. This is regardless of whether they have a tenancy agreement or a licence agreement.
When Sinead wanted to move out of her parents’ home, the only option offered to her was a residential care home, but at 26 years old, she didn’t want to live with people who were so much older than her.
Mary used to be a learning disability nurse. She had already brought up a large family, adopted two boys, and a chicken coop full of ex-battery cage hens! Her home - and her heart - weren’t quite full up yet though. She had enough room to share and enjoy life with another person. That’s when Mary and Sinead met. The result was two ordinary people coming together to share an extraordinary life. That’s what Arabella Weir, actor of Fast Show and Two Doors Down fame, saw when she visited them to find out what Shared Lives care is about.
Sinead says, “I love it here, I fought to stay here. Ever since I met her, she’s lovely.”
Mary says, “I would recommend anyone to become a Shared Lives carer – and give people a richer life.”
Shared Lives carers open their homes and lives to someone who needs a little care and support to live life to the full.
It sounds ordinary, but Shared Lives care is the highest rated type of social care, inspected by the Care Quality Commission in England, with 96% of schemes rated good or outstanding, and top ratings by the Care Inspectorates in Wales and Scotland.
You could be helping with shopping, continuing rehab after an operation, providing a consistent relationship after a breakdown, or becoming the joint champions at your local bowling alley or pub quiz!
People can face a lot of closed doors in our health and social care system. Shared Lives carers open them. We offer training, but the main thing you need is a big enough heart and a zest for life. Through the highs and lows, Shared Lives carers are there to help people recover and enjoy life together.
If you think you could offer a warm, friendly home and your heart is big enough, talk to your local scheme to find out more.
Shared Lives Plus is a network of companions, supporters, doers, and excellent brew-makers.
We support our members: local Shared Lives schemes and Shared Lives carers, to get on with life in an ordinary home, by making sure national and local governments understand the amazing Shared Lives people can build and create the legal and financial system to make it easier. Find out about our latest wins for Shared Lives carers.
Join our membership to stay up to date with national practice, guidance and support.
We're pleased to share some great news for Shared Lives in Wales, where several Shared Lives carers had their brilliant work recognised, and scooped gold and silver prizes in the Wales Care Awards.
The Wales Care Awards are a celebration of excellence across the Wales care sector. The purpose of the awards is to congratulate those individuals who have demonstrated outstanding excellence within their field. The Awards are an annual event run by Care Forum Wales to showcase best practice across the care sector.
Awards were presented in three categories – gold, silver and bronze – and are an important part of raising the profile of care workers and educating the public about the vital work done by carers across Wales. There are twenty award categories available for nomination, which represent all areas of social care, whether it be older people or specialist services, residential or home care. Nominations were invited for those engaged on a full, part-time or voluntary basis across the social care sector in Wales.
We are delighted that Shared Lives carers from South East Wales and PSS Shared Lives, North Wales won two golds and two silver awards between them.
• Silver for Excelllence in Learning Disability and Mental Health Services was presented to Dei Williams from North Wales
• Elaine and Len Bastin were awarded Gold for Promoting Fulfilled Lives category
• The Peter Clarke Gold Award for Promoting Excellence in Services for Children and Young People was presented to Lynne and Jeffrey Gornicki
• Tim and Christine Masters were awarded the Silver for Excellence in Palliative and End of Life Care.
What a fantastic achievement for all of these winners and a wonderful reflection of the quality of care that is delivered by Shared Lives Carers across Wales. Thank you for putting Shared Lives firmly on the map!
We want to know about your experiences around the issue of self-funding people accessing Shared Lives. Please spare a few minutes to answer some questions - it will help us to expand the offer of Shared Lives to people who pay for their own care all around the UK.
Access to Shared Lives is usually through a referral from a social worker or health provider and comes with a financial assessment and an established pathway to pay for the service.
Under the enormous pressures of austerity, however, many older people are no longer meeting the assessment criteria for care and are having to fund their own care needs. People with a dementia diagnosis are often not offered a paid for service until the dementia is far advanced.
In recent years, as services have been reduced, many people have been forced to self-fund support to increase their quality of life. Family and informal carers may also choose to pay towards care and support for a loved one to supplement the informal support they provide or to provide respite.
Until recently it was difficult for Shared Lives to support self-funders due to tax laws, but in November 2017 a significant update to tax law was announced which ensures that Shared Lives carers can continue to claim tax relief when they support people who pay for their own care.
There is little understanding of how self-funders can access Shared Lives, particularly those schemes that are operated by local authorities. Shared Lives Plus are looking at how to open up Shared Lives to Self-funders and develop pathways for self-funders wishing to use Shared Lives. As a first step we are interested to find out more about how schemes are offering support to people who self-fund their care.
Definition of Self funder:
A self-funder is a person who pays the full cost of their care and support from their own financial resources.
People may self-fund their care and support because:
1) They have not approached public authorities and made their own arrangements for their care and support.
2) They have been assessed by the Local Authority and do not meet the threshold for publicly funded assistance.
3) They have been assessed by the Local Authority as being eligible forcare and support services but have savings or assets above the self-funding threshold set by the government currently, £23,250.
“Social Tourism” is an initiative that seeks to support vulnerable or disadvantaged groups of people to be able to experience breaks away, new activities, and different cultures.
This week in Wales, we at Shared Lives Plus were excited to attend the launch of the Short Breaks and Social Tourism Practice and Research Network in Porthcawl. The Network was launched by Huw Irranca Davies, Minister for Children Older People and Social Care in Wales.
Hosted by the Wales School for Social Care Research and Linc Care, it was a full programme which included presentations from organisations who already provide various forms of social tourism across Wales. During the day we heard from a number of presenters, including STEER, MIRUS, Trinity and Carers Wales who shared the state of caring in Wales statistics with the network. (83% of carers had not had a week off in over a year, 70% suffered mental health)
Social Tourism has been shown to lead to increases in self-esteem, mental health, family relations, social engagement and participation in education and employment. Access to these benefits should be universal, and we were happy to contribute to discussions on a number of issues relating to rethinking social tourism and other forms of respite.
We were asked for responses to questions and key themes from this launch, which will be fed into the four nations knowledge exchange program. Watch this space!
"Health services need to trust in the good reputation Shared Lives has in social care and look at Shared Lives as a positive option for people. We recommend professionals to pick up the phone and talk to the Shared Lives scheme about any potential referrals; these conversations can prove really valuable."
We have been working with schemes all over the UK to explore and develop Shared Lives as a way of helping people who no longer need to be in hospital recover in a safe, comfortable and non-clinical environment. Shared Lives as intermediate care can be a great option for people who are ready to leave hospital, but not quite well enough to go home yet. It can also relieve pressure on our NHS by freeing up space in hospitals.
We are two years into this project, which began in 2016 with funding from The Dunhill Medical Trust and Department of Health Innovation, Excellence and Strategic Development (IESD.) We are pleased to share an update on the progress of this work, which has shown that "Shared Lives can work well for people being discharged from hospital, especially where traditional services would be unsuitable."
Nick Sayers, Ambassador shared what equality and diversity mean to him, at our 2018 conference, with his own poem that he performed in the morning plenary.
"I am an Ambassador, a worker and a volunteer. Being an Ambassador means I sometimes give talks with Alex who is the boss of Shared Lives Plus. Being an Ambassador and being a boss are different jobs but they are both important. I am happy to be different from Alex. We are different but we are equal. He is Alex and I am me. And this is my poem about equality.
I have never wanted to be anyone else
I am far too happy being me
All the things I can do.
If someone says to me
“ You can’t go there Nick”
I just reply
“Then help me find a way”
because I want to
and they do
and I can be
That’s Equality for me."
In this speech from our 2018 conference, James Rosborough, Ambassador explains the effect that being in Shared Lives has had on his independence and his ability to pursue his goals and dreams.
"My names is James.
I have been living in a Shared Lives arrangement with Andy and his family for nearly eight years. Before this I lived in a specialist home for over 20 years.
I now like the freedom I have, to do the things that I enjoy, when I want to do them, just like most other people. I can choose to go out, without telling anyone, and meet friends in my favourite café. I can do most things for myself, but can I get help when I need it. People are not doing things for me all the time and this makes me happy.
I now have my own house and garden, something I never thought would happen to me. I can choose to go to Karate, order a pizza or go to the pub, with or without Andy.
I like feeling a part of things, being a Shared Lives Ambassador, giving talks to help people know more about epilepsy, working with Local Social and visiting lots of new places. I like helping people and they let me do it now. People listen to my opinions and ideas, although I am not always right, this also makes me happy.
Epilepsy does not now stop me from doing anything and my health has improved since being in Shared Lives.
I am very, very proud to be a Shared Lives Ambassador.