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."
Simon Stevens, Chief Executive of NHS England, hailed Alex Fox, CEO, Shared Lives Plus' new book 'a wake up call' for health and social care services. Launched on Wednesday 28 January at innovation foundation Nesta, over 70 people overcame blizzard conditions to hear Halima Khan, Executive Director in conversation with Alex Fox and Simon Stevens. 'A new health and social care system: escaping the invisible asylum' says that values behind Shared Lives and Homeshare "are still shockingly radical, but feel entirely natural".
Stevens, said the book is a provocation for the kind of services that currently exist, as well as carefully demonstrating the practical ways that health and social care can be more human in future.
'A new health and social care system: escaping the invisible asylum' looks at our public services through the lens of more human ways of supporting people such as Shared Lives, now used by thousands of UK people. It brings into visibility the ways in which we inadvertently squander the potential of people with long-term support needs and the creativity and caring capacity of families and front-line workers. It shows that the beliefs, rules and economics of our public services are entrenching the wrong approaches.
How do we find sustainable and human ways to care for people with long-term needs? Why are public service approaches so often found to be letting down disabled and older people and creating toxic environments in which well-motivated people feel under pressure to do the wrong thing?
Drawing on the ethos, practices and economics of new and emerging approaches, the book goes on to propose a new model for public services to replace the ‘invisible asylum.’ It argues that our new care and health system will be focused on achieving and maintaining wellbeing, rather than on reacting to crisis or attempting to ‘fix’ people. It will connect people and be prepared to measure its harm as well as the good it does. It will need to ask more of us as well as offering more. Responsibilities, resources, and risks will be more fairly and transparently shared between citizens, families and services. The book offers steps which all of us could take to achieve this vision.
Watch the launch through the recorded live stream
Order your copy of A new health and care system: escaping the invisible asylum. It was published on 28 February 2018 by Policy Press and launched at Nesta in London and at a seminar at Manchester Metropolitan University’s MetroPolis
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.
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.
Our latest guest blog is from another one of our Ambassadors, Michael. In the past Michael was a part of a Shared Lives arrangement, he now lives independently. Michael’s blog is about his journey to living independently with help and support from Shared Lives along the way.
“In September 2011 I moved from fostering to Shared Lives, I lived with a Shared Lives carer 24/7 until 17th May 2012.
It was good because it helped me learn how to become independent. On the 17th May 2012, I moved from my Shared Lives arrangement into supported living, but I continued to use Shared Lives for day support
One Shared Lives carer that supported me was called Sharon. She supported me a few times a week to help me get out and about. We went to the Coronation street tour 3 times, Disney on Ice, shopping and the cinema. We had fun and many lovely times, Sharon even helped me with household tasks, like buying things for my home and supported me until October 2015. Shared Lives carer, Sharon was the best worker I've had since my mentor in 2007/08. I still miss her but everything I’ve done and learned with Sharon will stay with me.
I’ve had a few other Shared Lives carers in that time that didn’t always work out- but when I moved on 22 April 2015, I met Syvania. She supported me for 9 and a half hours and Sharon was also supporting me for 8 hours, Select Support Partnership were with me for 9 hours a week. I have many lovely memories with Syvania, she helped me to stop drinking fizzy pop and drink healthy fruit juice instead, and I only have fizzy pop when I’m having a mocktail or cocktail now.
My Shared Lives carers have been like a mum to me, they have patience to teach me new skills, they’ve helped to teach me to cook and clean up.
People who don’t know about Shared Lives could learn from Shared Lives carers, they help to improve people’s life skills, go out on trips and holidays, and get you involved with community groups.
Shared Lives carers have helped me out with emotional support, given me someone to talk to, be healthier and I’ve been supported well. Everything I’ve learned with Shared Lives will help me in the future.
Shared Lives has helped me to be more organised, which means I worry less, everything is in order which means I’m less anxious now. I know how to do shopping lists, Shared Lives carers told me to check what I’ve got in before I go shopping, so I don’t buy the same stuff. I look out for offers and shop in the healthy isle. They’ve taught and showed me how to manage my money. “
Michael lives independently now and gets support from another agency but is still a part of the Shared Lives family as one of our Ambassadors.
For further information about becoming a Shared Lives carer, a member or using Shared Lives services, phone the office on 01512273499.
Shared Lives has been overwhelmed by responses to our request for Christmas memories and moments, over the years.
This year we wanted to celebrate Christmas with a look back at how Shared Lives carers and the people they open their life, home and family too, celebrate the festive season.
We have been inundated with heart-warming, fun and meaningful memories from Shared Lives carers and schemes.
This year’s Christmas theme is to showcase the relationships developed through Shared Lives- and what it means to the people who use our services.
We also wanted to show everyone what a Christmas with Shared Lives is all about- as many of our Shared Lives carers may not use social media.
One Shared Lives carer, Loraine Muir, sent me her greatest Christmas moment with Leslie, who she has known for 13 years.
“I am Lori, a Shared Lives Carer in Horsham with the West Sussex Scheme. In that capacity I have known Leslie, a sixty year old gentleman, for thirteen years. Last year following a significant bereavement I thought it would be a positive experience for us both to visit Longleat Festival of Light with my Daughter and Grandchildren.
We stayed nearby the night before so we could make the most of the day. It was everything I had hoped for and more. From seeing all the magnificent animals to the boat ride, it was immensely enjoyable for our three generation group. However, as Leslie loves birds the daytime highlights was feeding the colourful Lorikeets, and the Parrot show, which made him laugh out loud.
As it grew dark and the lights were turned on the atmosphere became completely magical. We walked around the visual displays in awe and wonder. The many photographs taken were put in an album for Leslie and he proudly took it with him to show to his friends. It was a very special and uplifting occasion for us all but it was particularly heart-warming to see how much Leslie enjoyed himself.”
We would like to thank Loraine for sharing one of her and Leslie's favourite festive moments, and everyone else who has sent theirs in to us. Merry Christmas from everyone at Shared Lives, please continue to send in all your best Christmas memories and pictures spent with Shared Lives!
As the challenges of austerity continue after the Autumn Statement was announced- with social care seemingly taking a back seat to other priorities, there has never been a more appropriate time to demonstrate what the Shared Lives care model can achieve.
The Shared Lives care model is a personalised form of care that focuses on developing people’s independence and capabilities. People that live with learning disabilities, long-term illnesses, mental health problems and dementia. This is achieved through setting up a ‘shared life’ arrangement were people who have trained to become a Shared Lives carer invite someone who uses Shared Lives services into their home. They make the person feel like they belong and they are surrounded by friends- in a family environment. The focus of the arrangement is based around the goals of every individual, what they want and need from life, the support and integration into their local communities- in a family environment that will support and encourage them to live the best quality of life possible.
Rose spent over 20 years living in a residential placement before moving to live with a Shared Lives carer, in April 2016. Rose has a complex and profound learning disability, very limited verbal communication and is in some ways a very vulnerable young woman. Historically, Rose was labelled ‘challenging’. It was clear she needed several Shared Lives carers for different support needs.
Rose now lives with Maxine, and has support from four other Shared Lives carers who provide day support and overnight ‘breaks’ for Maxine, who is a Shared Lives carer is Derby.
Rose loves horse-riding, swimming, going for a coffee and socialising. Going to church has been a big feature in her life.
It was the smile that won Maxine over and, for several months now, Rose has had possibly the most settled and community-based support of her life.
Heather is one of the Shared Lives carers who supports Rose in the day. She says, “My friend is a child minder and she lives over the road. When Rose comes on a Tuesday and Friday, Susan always pops over for an hour and Rose loves to spend time with the children… Rose absolutely loves children...”
Introductions continued for around 6 months, an afternoon, a full day, and then two days a week. These were maintained when Rose went from hospital to a respite provider- it was too soon to attempt a move straight to Maxine’s. Rose eventually had an overnight at Maxine’s and this went really well. Training and countless meetings for the Shared Lives carers, including Rose’s mum and family were arranged and everything went very well.
After a few problems and difficulties in their initial meeting, they both began to build a relationship and Maxine gained Rose’s trust. At present, they have a great connection and understanding of one another, and Rose is now able to share her everyday life and activities with Maxine which was unimaginable two years ago.
Another Shared Lives carer, Julie, says: “It’s the highlight of my week. I really look forward to Rose coming here. I just get so much from it, so much in return.”
Monica takes Rose horse-riding and this is her favourite time of her week. Monica also supports a gentleman long term. He and Rose have made a really valuable and genuine friendship. “They both love spending time together. It’s simply two people who have really clicked and enjoy each other’s company.”
Maxine has included Rose in all aspects of her life….Truly shared her life: “My mum loves coming round and seeing Rose... Rose has made a big impact on the others at Church and is warmly welcomed each week and included in everything… Rose brings a richness to my life, has a real sense of humour and real character…”
Rose has now been at Maxine’s for almost one year. There have been ‘incidents’ and challenges, but everyone involved in Rose’s life agrees that this has been a real success. Rose is leading a ‘normal’ life in her community, with people in her life who care and take an active interest in her life, expand, develop and create fresh experience and opportunities. Rose’s social circle has grown significantly and will continue to do so.
Some arrangements can be challenging but not impossible. Shared Lives Worker, Dean Davis and Ordinary Lives Team Social Worker, Naomi Fearon, have worked very hard ‘thinking outside the box’ to make this arrangement work for Rose so successfully.