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.
In this fantastic speech from our 2018 conference, Michael Turner, Ambassador describes his vision of equality and diversity - which for him is about "having the chance to go to infinity and beyond no matter who you are."
When Lyn asked me if I would talk about equality and diversity at the conference I asked her:
“What are you going on about?”
She had to tell me what she meant. I still didn’t know what she was going on about, so I asked:
“Is it about us Ambassadors then?”
And she said;
So we talked some more and then she told me:
“Just say what it means to you Michael”
So, that is what I will do. Getting equality is about resilience and never giving up.It is about keeping going till the last minute till you reach your destiny, your mission is completed, or you have won.
Diversity is what makes someone special. Buzz Lightyear from Toy Story struggles to come to terms with who he is. For a long time, he pretends that he is a space ranger so much that he really believes he is a space ranger. Then when he finds out he is ‘Just a toy’ he is sad and ashamed of who he is.
Woody, his friend, has a good quality. Woody’s quality is to help Buzz understand and be proud of who he is. He might not be a space ranger, but he is just as good.
He is more than good. He is someone special. In fact, he is a really cool toy.
We are all different, so supporting us means listening and treating us as individuals not all the same. Like, for me, that means having plenty of notice. I get equality at Shared Lives Plus because of the quality of support I get. This helps me to be more confident to be myself and my qualities get better.
Equality is about having the chance to go to infinity and beyond no matter who you are.
Diversity means we don’t all have to be space rangers to do it.
We are all good.
We are all special.
We are all pretty cool, in our own way.
In this fantastic speech at our 2018 conference, Rita*, a Shared Lives carer, describes her experience of supporting someone who has experienced gender transitions as part of our theme of equality and diversity.
"My name’s Rita, I’m a Shared Lives carer and I live in Kent. I am supported by Bettertogether, the Shared Lives scheme in Newham and Havering, and I support two young adults - Sean* and Josh* who live with me and have given me permission to share some of our experiences with you.
I’d like to share with you examples of what diversity and equality looks like within Shared Lives, in ‘real life'. I’d like you to consider the language we are taught about diversity and equality, and how our attitudes are tested in the real world of Shared Lives care.
Josh is now 20, fostered with me since age eight, and I became a Shared Lives carer when he was 18.
Imagine the scene; a young lad has lived with you since childhood, and is now age 16. You knock and enter his room to find him putting on a lacy black petticoat, you realise it’s yours.
What would your response be?
As you may guess, this happened in my world, four years ago. And often my responses surprise even me. I just said:
“Josh, you know you should ask before borrowing my things……… Supper’s ready”
I closed the door and went back downstairs. We ate and then I asked if he’d like a chat. All the stereotypes came into my mind; transvestite? Cross dresser? Gay? Does he like the feel of lace as part of a sor tof teenage sexual experimentation? Gender identity didn’t even cross my mind.
We chatted and when I asked about his response, he said he didn’t feel at all “awkward”….. but he thought that I did. It transpired he had been secretly wearing a variety of my underwear and clothes for quite a while and had always felt like a girl, since around age 6 yrs. To him my clothes just felt natural.
I will never forget when I said, “that’s ok, if that’s how you feel, I love you as you”. The smile on his face was indescribable - epecially given that he rarely shows emotion.
I asked his permission to seek advice and support him regarding his wish to outwardly portray as female.
Also, a note to self at this time, I have far too many clothes, so many that I didn’t even miss the ones he had stashed away from me!
So thinking about diversity - and I don’t mean Ashley Banjo and the dance group - how do we react to all that we come across in Shared Lives? Think back to the petticoat scenario. I’d like you to notice that I didn’t say to Josh:
“It’s ok with me, I accept your gender choice.”
Society asks us to ‘accept’ people’s differences: "I ‘accept’ your diverse needs, your disability, gender, sexual orientations..."
Personally I feel that this is actually quite patronising to people, who are placed in society as the minority. By the talking of ‘acceptance’ are we not saying that we the majority accept the minority? How condescending of us! Would we say (or think of) Joe Bloggs next door:
"I accept you"?
No! We just do, naturally. That’s how I think of Josh, he just is. In his gender identity journey he became Jenny for a year, back to Josh for a while, then chose to be Jade for about a year.
Currently he is Josh again -watch this space! Because within Shared Lives he has autonomy and empowerment of choice, including the freedom to change his mind. But struggles and faces prejudice from parents and even self in the need to fit in.
This brings me to equality. In all the training I have had over many years, the standard definition of equality in the workplace is to:
"Treat everyone the same regardless (or irrespective) of race, gender, disability, religion or belief, sexual orientation and age."
For me, to ensure equality you need to be regardful and respective, of everyone, however different they are, because within all of us we have prejudice, we are judgemental and have stereotypical views which are nurtured since birth. If we deny our stereotypical views, change can’t happen. Hands up, I had stereotypical thoughts about the petticoat, (but didn’t show it.)
However, at the beginning when Josh portrayed herself as Jenny, I judged how she should look, behave, even feel like a girl and I voiced these thoughts to her. It was difficult and painful for both of us.
We sought advice at a gender identity clinic and we learnt from them, but mainly, I got immense support from the team at Bettertogether, my Shared Lives scheme in Newham and Havering.
We have been on Josh's journey together, during which he has expressed his feelings about himself through behaviours such as self harm, alcohol, drugs, stealing and seriously pushing other boundaries. That was difficult and painful to support him through too.
Through it all I kept my regard for his disabilities, striving to understand his perspective. In my view, I know instinctively inside he is female. Frustratingly, the gender clinic were quick to judge his “confusion” as being down to his disability, global development delay. They judged his ambivalence as him not having body dysphoria (a criteria for support)and they didn’t recognise his delayed emotional intelligence.
His voice was therefore not taken seriously and somewhat dismissed. The mental health service - the same, they didn’t show any ability to find the ways to communicate with Josh, thus support sessions stopped. It was really frustrating.
What is so great about working with Bettertogether, my Shared Lives scheme, is that Emma, my support officer and Sarah, the manager have a great ability in helping me to sound off, stand back a bit, and reflect. But through it all they believed me and Josh. This relieved my frustrations - they trusted my professionalism. They carried out a Mental Capacity Assessment which confirmed my instincts.
During difficult times with Josh, Sarah Havard, my Shared Lives scheme manager advised:
“You can’t always choose what happens, but you can choose how you react.”
This advice has been so useful for me in many contexts, thank you. When others have failed Josh, when society have judged him, my scheme - Bettertogether, (who may I add have recently been inspected as ‘Outstanding’) have been my go-to rock, my back bone to carry on advocating for Josh. They are my one step removed perspective of what I live 24/7.
To conclude - diversity and equality…whatever ‘label box’ our adults are put into, what’s paramount is that they are human beings and equally part of human kind, let’s not just accept them, let us behold, value, respect and especially learn from them. And on that note, I asked Sean, who’s been with me a year now:
“when explaining our relationship to others, how would he like to refer to me as, your carer or your host?”
His reply was:
Yes I care/support and host but he just wants, and views me to be, his equal. Another human being with whom he shares a home with.
Just a thought: this shows, we are Shared Lives.
*names changed for confidentiality
It was uplifting to see so many of you – Shared Lives carers, scheme members, ambassadors and brilliant guest speakers - at our 2018 conference. On Tuesday 2 and Wednesday 3 October, members from all over the UK travelled to Milton Keynes to share experiences, learn new skills and celebrate the thousands of small daily miracles that make up the world of Shared Lives and Homeshare.
The theme of this year’s conference was equality and diversity, an issue which was woven in to several of the keynote speeches and workshops.
For those of you that couldn't make it, and for those who could who would like to recap - you can find all the resources from conference below!
Chair's report - describing the achievements, activities and status of Shared Lives Plus over the last year. Delivered by Martin Ewing on behalf of Richard Jones.
Rita, Shared Lives carer keynote speech on supporting a person experiencing gender transitions
"I've now got my own house and garden - I never thought I would have and it makes me happy" - James Rosbrough, Ambassador
"If someone says to me 'you can't go there Nick' I say 'then help me find a way'" Nick Sayers, Ambassador
“We are all pretty cool in our own way - equality means treating us as individuals and not just the same.” - Michael Turner, Ambassador
Barriers to change: what stops schemes expanding and innovating - exploring what stops us developing new services, including: a round-up of how we might expand and why, presentations from Shared Lives schemes who have expanded to introduce innovative services on what works and what doesn’t, an exploration of the role Shared Lives carers can play, exercises on how barriers might be overcome, including possible perceptions and misperceptions.
Building your reputation - a guide to thinking strategically when planning out communications campaigns for Shared Lives schemes, with a good practice case study from Tameside Shared Lives, whose Shared Lives carer recruitment campaign won a national marketing award. Delivered by Phoebe Rowell and Michael Kazich, Shared Lives Plus communications team, and Adam Lomas, Assistant Team Manager at Tameside Shared Lives
Domestic abuse and Shared Lives - providing a comprehensive background to the issue of domestic abuse in the UK, with statistics from SafeLives, the UK's foremost domestic abuse charity, and an insight into how Shared Lives could support people who have experienced domestic abuse. Delivered by Natalie Blagrove, Shared Lives Plus development officer for domestic abuse and senior adviser at SafeLives knowledge hub.
Employment status of Shared Lives carers and Shared Lives agreements - reporting on the specialist advice Shared Lives Plus sought in order to provide a legal clarification on the employment status of Shared Lives carers and to re-write the existing Shared Lives model agreements. The workshop also explored the link between day to day working practice in Shared Lives schemes and employment status.
Engaging with Self-funders - Looking at barriers and challenges for schemes to support people who pay for themselves, including potential funding pathways. This workshop considered resources and changes in marketing to promote Shared Lives to self-funders, and ways to engage with family and unpaid carers who may be financially supporting people to use Shared Lives. Delivered by Sue Eley, Development manager for England, Shared Lives Plus.
Managing finances in Shared Lives - helping to understand all matters financial for Shared Lives carers and schemes, including hw to manage the benefits of a person in Shared Lives and everyday finances for Shared Lives carers, appointeeships, financial abuse and banking for people who use Shared Lives.
Shared Lives for mental health - drawing on success stories and good practice in the world of Shared Lives supporting people with mental ill health. Delivered by Shared Lives Plus development officers Jenny Evans, (Intermediate Care, ) Ali Hall, (transitions) and Jane Allen (Socially Excluded Adults.)
My wellbeing matters - a guide to maintaining your personal wellbeing, with tips for practising self-care and increasing your emotional resilience -for everyone! Delivered by Emma Cheetham and Rachael Radford, Shared Lives Plus development officers for Shared Lives in health, and Meg Lewis, Shared Lives champion with lievd experience.
Top Tips for recruiting Shared Lives carers - reviewing existing Shared Lives carer recruitment strategies, considering tools and ideas that have been used across the UK to and helping to develop action plans for your scheme. Delivered by Development officers Denise Nygate (care leavers) and Lesley Stevenson (Scotland.)
Safeguarding in Shared Lives - exploring issues around safeguarding in Shared Lives, drawing on legal guidance, the Human Rights Act and real life case studies. Delivered by Emma Clarke and Jenni Kirkham, Shared Lives Plus development team, and Michael Turner, Shared Lives Plus ambassador.
Transforming Care: Shared Lives and complex needs - explores the Transforming Care agenda and the role Shared Lives can play with scenarios mapping out what a positive patient journey from hospital to Shared Lives would look like, and describes how Shared Lives Plus can support local schemes and their CCGs to work together to develop Shared Lives for people with health needs.
Social Media in Shared Lives - A look at social media in the context of Shared Lives – the good, the bad and how it can be used safely and effectively by people involved in Shared Lives arrangements. Delivered by Mark Gallagher, senior support and quality officer, Shared Lives Plus.
How to set up a Shared Lives scheme for the 21st century - thinking about ways in which Shared Lives carers, people who use Shared Lives and their families can themselves develop sustainable Shared Lives services using a Community Interest Company model and consider the things you need to think about throughout this process.
Young people in transition and care leavers - an overview for anyone working with young people and care leavers aged 16-25, presented by Ali Hall, Development officer for young people in transition and Denise Nygate, Development Officer for care leavers