Tony Kirby and Darren Brooks talked about their Shared Life together with MPs at our recent parliamentary reception. Their humour had everyone laughing.
"I'm Tony Kirby, and I’m a Shared Lives carer. I’m here today with my wife Jane, who is also a Shared Lives carer, along with Darren. Darren, who through the Shared Lives scheme has now lived with us for almost a year.
We were first introduced to Shared Lives in 2015 and were immediately impressed by the support and dedication their staff showed. Not only to the people who need their support, but to their team of carers too.
Jane and I joined the team of carers in 2016 and carried out the relevant training needed. We had our concerns, especially if we could cope, as you can’t just clock on and off as a Shared Lives carer. But any of the doubts going through our minds soon diminished, as the Shared Lives team were able to answer all our questions quickly and professionally and put all our doubts to rest, leaving us feeling very confident.
When Darren came to join us last year, he was matched to our skills and ability, and to our environment, for example our family of two teenage daughters who were initially worried about sharing their space and our time together. But Shared Lives is all about sharing and caring, which works both ways, so we had to meet Darren’s needs too. Our job is to care for Darren, but also to help him to become more independent and self-sufficient, so that one day he’ll be able to live independently.
Darren wasn’t very talkative when he first joined us as he had been in a residential home for many years. It's like he's got his personality back now and rediscovered all the things he likes doing - fishing, walking, being outside, instead of stuck in front of a TV.
Just before Christmas last year his cousin came to visit him and was brought to tears. He hadn’t managed to have a conversation with Darren for over sixteen years. He thanked Jane and myself for what we had achieved in such a short period of time, and in no time, Darren was in full contact with most of his immediate family, who were also very appreciative of the work we had achieved. Darren also struggled with his health, but with a fitness program we put in place, this soon changed. He's about to have an operation on his neck soon, but he still won't be as good looking as me when he comes out!
Darren has become part of our integral family, and we take him on holidays and trips away. He fits in well to all our lives, and us to his, and although we must make a few changes to our daily routine to meet some of Darren’s needs, it’s never a problem.
So, we would like to thank Shared Lives and to the team of dedicated staff, for their support and being there for us, as we’re now one big happy family, and would recommend Shared Lives to all.
"I'm Darren and I would like to thank Shared Lives for giving me the opportunity of gaining my life back, after living in a nursing home for many years, following my accident.
I am now living with Tony and Jane and their two girls in a happy family environment. Before I can't really remember anything I did. I really enjoy my life now. I like going for walks now and like finding out new things and places, which I can’t see anything wrong with."
Meg spoke to MPs at our parliamentary reception about her experience of Shared Lives. She wants you to hear her story.
Hello, my name is Meg and I’d like you to take a moment. Think of something you deeply regret.
Think of a time where you’ve behaved inappropriately or something cringey you did when you were drunk…
Now think of those words you’ve cursed in rage when someone cut you up at the junction.
Now imagine if all of these things were:
Now most of us in this room look like trouble, a risk.
Remember, there’s nothing about how you work yourself into the ground five day a week to support your family.
Nothing about you caring for your elderly grandmother.
And there’s nothing about how you tracked down that stranger to return his wallet. Because you’re not a person, you’re a case.
For 13 years of my childhood, I endured severe trauma in all domains. As a result of this, I have spent most of my life in psychiatric hospitals due to my fragile state of mind and the severity of the harm I was inflicting upon myself.
My last hospital admission lasted four and a half years where I worked my hardest in therapy, processed the traumas and came to terms with my past. I found hope and I became strong. It was time to leave hospital but no-one knew where was the best for me to go. I knew I needed to feel part of something and to be genuinely cared for, away from a clinical setting.
After many weeks of searching, I found out about Shared Lives. I took the information to my doctor and she agreed it was perfect. Before long I was matched and placed with my Shared Lives carer named Hayley.
I didn’t know how to live in the community as an adult. I was so scared.
But Hayley taught me how to cook and supported me to shop. She sharpened my road sense and showed me how to get around on public transport by myself. As well as all of this, she stood strong by my side, through my mood swing, my tears and frustration. We got through it. She’s my angel.
It’s been 22 months since I left hospital and moved into Hayley’s care and I have achieved so much.
I work in a dog grooming salon three times a week. I run a self harm support group in my town. I’ve been on adventures and made new friends. And in January this year, I moved into my own house independently and just receive day time support. Also it has been 14 months two weeks and six days since I last self-harmed.
Shared Lives saved my life.
More people need this chance. We need to see them as people with a future, instead of a risk. Or a case study.
I’m just trying to say that we need to give more people a chance of happiness, like the happiness that Shared Lives gave to me.
Shared Lives matches carers and people with support needs, promoting independence and reducing isolation - but too few people know about the service, the Guardian reports today
When Sarah* came to live with Heather Samuels and her daughter in Manchester, she had been struggling to cope at home after her mother was diagnosed with a terminal illness.
The 28-year-old has Asperger’s and autism. “She didn’t want to leave the house and she didn’t really speak,” says Samuels. “Now she’s becoming much more independent, she walks everywhere and is always out and about.”
Samuels admits it took time and effort to get Sarah used to a new family life, but encouraging her to speak instead of shaking her head, introducing a daily routine, and giving her ownership of chores (such as tidying her room), has helped. The family also took Sarah to Bermuda on holiday with them last year, where she tried new activities including jetskiing. The arrangement is working well - Sarah says she likes “everything” about living with Samuels.
Interested in becoming a Shared Lives carer? Read the full article
Shared Lives Plus are pleased to announce that the NHS will extend free flu vaccines to Shared Lives carers in England. The news comes after Shared Lives Plus showed that Shared Lives carers are supporting thousands of people at risk of flu across the UK and a key part of the health and social care workforce.
Alex Fox, Shared Lives Plus, CEO, said,
“We are delighted that Shared Lives carers have been recognised for their incredible work supporting thousands of people who need extra support to live well. We want all Shared Lives carers to have the opportunity to lead healthy lives and support the wellbeing of everyone who they share their lives and home with. This is just one example of the power of our Membership and our work with the NHS which values the incredible work carers do every day.”
NHS England will confirm the date that Shared Lives carers in England can get a flu jab after GPs and pharmacists have been informed.
We encourage Members in Scotland, Northern Ireland and Wales to use this decision by NHS England to talk with their health authorities, so that Shared Lives carers can protect themselves with the flu jab, as they are a key part of the health and social care workforce.
Alex Morton, NHS, Director of Commissioning explained, “Flu immunisation should be provided to health and social care staff… who are directly involved in the care of vulnerable clients who are at increased risk from exposure to influenza, meaning those in a clinical risk group or aged 65 years and over. We believe that Shared Lives carers, recruited and approved by any of 120 local CQC-registered Shared Lives schemes, would be covered by the extension as they are part of the regulated social care workforce directly involved in providing care to vulnerable patients/clients who are at increased risk.”
He continued, “The announcement of the scheme to vaccinate this population group does not replace existing occupational health schemes or access to the flu vaccination for at risk groups, including those with health conditions or those over 65, some of whom may be Sharing Lives carers.”
D “The harsh reality is that flu can kill and the best way to protect yourself is to get the jab. With more people eligible than ever before and the vaccine available in more locations, people should protect themselves and those around them from flu. Taking a few minutes to get the jab could save your life this winter.”
Flu jabs have been offed to 21 million people. The national drive marks the start of Stay Well This Winter, an initiative from Public Health England and NHS England to help the most vulnerable people prepare for winter and avoid having to visit hospital due to common winter illnesses. Flu is a serious illness in vulnerable people, potentially causing deaths and complications such as pneumonia. We would encourage Shared Lives carers to take up the offer of immunisation to protect themselves, their families and the people they care for.
Shared Lives carers are advised to take ID or a letter from their scheme saying they are approved and if needed, SC_flu_care_orgs_letter_FINAL.pdf
17,000 people who live in, or receive care from Britain’s second largest care home operator, Four Seasons, are today left in doubt about where they live, as the private equity firm Terra Firma pleads with lenders to approve a financial rescue package for it. Four Seasons was saddled with huge debts to its own owners after they bought the care provider in 2012. This £220m debt, loaned at 15%, will earn Terra Firma £660m by 2022. The financial struggles emerged today as part of the Paradise Papers leaks.
But it is the small signs, like the canary in the coalmine, that we need to listen to. Last week, Bield Housing, a high quality care provider, made the decision to withdraw from running residential care homes across Scotland, on the basis that this is no longer a viable financial business due to falling funding from local authorities.
The decision by Bield, although small by comparison, is the more profound. When a high quality provider walks away from an industry saying it is uneconomic, then our national leaders need to listen.
These two very different examples show, more clearly than ever, that we need new ways of caring in order to provide the dignity and care to our older family members.
There are options.
Using Shared Lives, older people can live in their own home and communities for longer. Their paid Shared Lives carer supports them to continue to live the life they know, their friendships, their families and their communities. Delaying the move into residential care leads to better lives for older people and their relatives who know their elderly parent is cared for by someone they have got to know and trust.
Alternatively using Homeshare, older people are matched with someone who needs a place to live and wants to share some of their time. The curses of loneliness and housing dealt with simultaneously.
There are always other ways to do things, let's not allow the greed of private equity and the collapse of an industry to destroy the lives of our parents.
Shared Lives Plus CE0, Alex Fox describes ten features of an ‘asset-based area’ necessary for developing strong communities and sustainable public services. This will be of interest to council, clinical commissioning group commissioners and wider public professionals.
This new Think Local, Act Personal resource started as a blog post. Thanks to the TLAP team and its Building Community Capacity network, along with inspiration from local areas such as Wigan it has now become a how-to guide giving ten pointers towards becoming an Asset-Based Area.
In an age of austerity, increasing attention is paid to what councils and the NHS cannot do, making it vital to gain some clarity on what the organisations and people of each area can do. Every area and its citizens can achieve more when they combine their expertise, time, creativity and resources. Decades of practice and research shows that this happens when:
• Everyone shares an asset-based mindset: looking first for what individuals, families and communities can, or could do, with the right support, rather than focusing exclusively on needs and problems.
• Services and organisations are co-produced with the people whose lives they touch. This means that everyone involved identifies priorities, co-designs services and systems, and works together wherever possible to co-deliver the work that takes place.
Every area already has at least some organisations, professionals and local people who take those approaches, but for them to have a wider and deeper impact, whole systems and areas need to be aligned around an asset-based approach.
Many asset-based practitioners argue that people can lead that change only when acting as local citizens, not when acting in professional or service leadership roles. An asset-based public body does not have ‘customers’ (whose only responsibility is to pay taxes), rather it views everyone, including people with long term support needs, as citizens, with rights and responsibilities. Rather than ‘providers’, asset-based areas have partners, who share responsibility for system design and the best use of resources. An asset-based area is responsive to need, but always looks for capability and potential. It is confident in the things it can do, and the difference its people’s skills and expertise make, but it has the humility to recognise its limitations, namely to fix people or communities.
There are a wide range of asset-based models upon which to draw. Effective and sustainable models tend to:
• Draw on an evidence base and identified model that can be co-produced with local people, for example refer to NICE Guidance.9
• Build local capacity and expertise, rather than relying on outside support.
Most approaches start by mapping an area’s assets. Approaches to this include asset mapping and appreciative enquiry. The NHS Integrated Personalised Commissioning programme10 has published a relevant guide. Where possible, asset maps should be ‘open source’, with a wide range of local people able to update and use them. Co-production approaches include those outlined by Think Local Act Personal11 and Coalition for Collaborative Care.12 Support models which draw (to varying degrees) on asset-based thinking include:
• Asset-based approaches to community development e.g. ABCD; 13 Asset-based consulting.14
• Approaches that support people to become active contributing citizens, and to find non service solutions whatever their life experience or impairment e.g. Local Area Coordination.15
• Community enterprise development e.g. Community Catalysts.16
• Circles of support e.g. Community Circles;17 Circles Network.18
• Shared Lives: Local Shared Lives organisations. 19
• Homeshare: Local Homeshare organisations can be found here.20
• Time-banking: Time Banks.21
• Time credits e.g. Spice.22
• Dementia-friendly communities.23
• Co-produced social prescribing approaches.
• Wellbeing teams24
• Leadership for Empowered and Healthy Communities programme25 which supports leaders to grow and nurture capacity in communities to improve health and wellbeing
This is not an exhaustive list. Ultimately, all services can be offered in ways which aim to help people:
• To build and maintain family and social connections and relationships.
• To build their confidence, knowledge and resilience.
There are a number of ongoing debates around asset-based approaches. Definitions of ‘community’ range from being place-based to seeing communities of interest as more important. Communities and community development work can struggle to be inclusive of all groups, particularly minority groups and communities, and people with stigmatised health conditions.
Some asset-based thinking is very sceptical of the ability of organisations, particularly large organisations, to behave in a genuinely assetbased way and there are concerns that the language could be selectively appropriated to justify funding reductions for traditional services. Asset-based approaches require a significant investment of time and resources and whilst they may result in reduced demand for state services, they cannot be introduced successfully with that aim. Whilst it is vital that decision makers buy-in to asset-based thinking, ultimately it will be the buy-in and leadership of local people upon which success depends.
Maggie who uses Shared Lives services recently asked her Shared Lives carer to write in to us and share her story. We hope you enjoy reading Maggie's story and looking at her pictures. This story is a great example of the positive impact Shared Lives can have on people's lives who have support needs and are looking to become a part of and living in a family enviroment instead of traditional forms of care.
“Hello, my name is Maggie and I have been living in Shared Lives for two years. I have really enjoyed my time being in a family and have made lots of new friends. I have also loved learning new skills, and trying out new things. This is the first time I have rode a horse and it was absolutely brilliant. I now go to eazyfit and the Odell centre, I also go to discos to see my friends. What I do love about Droitwich, is the band in the park in the summer. I have learnt how to cook with the help of my Shared Lives carers, Jackie and Kevin, and I enjoy preparing meals. Another bonus to living in Shared Lives is that I have been enjoying trips out and holidays. I have been to Lanzarote and this year we went to Portugal. Other places I have visited have been Blackpool, Coronation Street, BGT, Ironbridge, SS Great Britain to name a few. It is brilliant to live as part of a family and share our lives.”
Today, Shared Lives carers met Rebecca Evans, the Minister for Social Services and Public Health to launch the annual Shared Lives Cymru State of the Nation Report 2017.
In Shared Lives, an older person can get support in a Shared Lives carer’s home, while they recover from ill-health, or after hospital treatment, or for a short-break when a family carer needs support.
This year’s report calls on social and health care commissioners to look at how they can offer Shared Lives support to older people, and those with dementia, because all too often older people are missing out on this valuable alternative to residential care.
Shared Lives carers are trained and regulated. They are matched with the older person, who needs care, so they can form a real relationship based on shared interests and experience. Having a home from home in their own community often helps an older person recover their confidence and regain independence. Once they have formed a friendship their Shared Lives carer will be there to help them cope with any health crisis in the future.
Shared Lives Chief Executive, Alex Fox, said: “Commissioners need to think more imaginatively about the services they offer, if we are to transform care in the way Welsh Government has set out in the Social Services and Well-being Act.
Shared Lives support helps older people, who often suffer more because they are isolated and alone, form a real relationship that can support them to manage even chronic health problems.”
The minister has given Shared Lives tremendous support in their campaign to bring Shared Lives services to older people and those living with dementia. She said: “Leading an independent and fulfilled life is very important to an individual’s health and well-being. Shared Lives enable some of the most vulnerable people in our society to stay in their communities and benefit from a supportive family home environment.
“We supported Shared Lives Cymru new initiative through the Intermediate Care Fund to extend their valuable support to older people, including those with dementia. By offering respite care in a home environment, older people will be able to be discharged from hospital more quickly and be supported as they regain their independence, or even avoid hospital admission altogether."
The Welsh Government awarded a further £242,460 under the Sustainable Social Services Third Sector grant from 2016-2019 to support this work to enable older people needing support to stay with a trained and regulated Shared Lives family, close to their own home and in their community.
“I would like to thank Shared Lives for the great work they do and especially the carers who open up their homes to make a positive difference to vulnerable people’s lives every day.”
Traditionally Shared Lives services have been used by adults with learning disabilities to support them to live full lives in the heart of their communities. Although not well-known Shared Lives schemes offer services across Wales.
You can read the full Shared Lives Cymru State of the Nation Report 2017 here.