Beginnings and endings

At our annual conference, our Chair Richard Jones and I always hold a discussion session with Shared Lives carers and others, which is an opportunity for people to make sure we have the issues which matter most at the front line on our radar. Here are some of the issues which came up: they give a sense of why Shared Lives is valuable, what makes it unique as a way of supporting adults, and also some of the challenges and the ways in which we do not always value and back up Shared Lives households in the ways we should.

We heard from a Shared Lives carer who supports people with significant mental health problems. The people living with her could easily be living in medical institutions without her support and doubtless her care saves the NHS a fortune. During a late night crisis, she shared the poor response she had received from the local mental health crisis team. I won’t share the details, but the theme was a frustratingly common one: the value of Shared Lives comes from the fact that it occupies a hard to define space somewhere between ordinary family life and a service, at its best, taking the best of both worlds. But too often, the rest of a service system sees someone settled in Shared Lives, breathes a sigh of relief, and disappears. Good Shared Lives schemes offer well-planned out of hours support, but sometimes the response needed in an emergency needs to come from another part of the system, and these teams are not always even aware that Shared Lives exists. We believe that Shared Lives carers should be seen as partners by health and care professionals, with emergency plans in place to ensure that they can get an effective response. This is essential to make Shared Lives fair, safe and sustainable for everyone involved.

We also talked about endings. Shared Lives arrangements can come to an end for all kinds of reasons: the person may have achieved their goal of getting their own place, or their circumstances may change. Things may change unexpectedly in the Shared Lives carer’s household. People live together for decades, sometimes until one of them dies. There is no set retirement age and I meet Shared Lives carers who are now in their 80s. Sometimes, an individual who has lived for many years with a Shared Lives carer who is now ready to retire moves in with their original Shared Lives carer’s adult daughter or son, whom they may have known all their lives. But complete continuity of that kind is not always possible. The Shared Lives carers we heard from felt that the difficult topic of endings is one we need to talk about more.

Endings can sometimes be enforced by social workers who assume that the individual’s goal should be to move into independence. Sometimes this is right, but at others, we see people who were happy in a household they have come to regard as their family home being obliged to live by themselves, sometimes unhappily or worse. Not many of us dream of living alone, so we should be cautious about assuming that is always the right thing for someone with a learning disability or another support need and we should listen to their wishes and goals, without making assumptions about concepts like dependency, which we may not be so quick to apply to our own lives.

At other times, the inevitability of an ending is ignored until it is too late to plan effectively for it. Some Shared Lives carers say that they feel guilty about the idea of ending, even though they are ready to end their active caring role and perhaps need to for health reasons. We have more work to do in this area: ensuring that people living in Shared Lives households feel supported to talk about choices, including endings, and can plan for the changes they dream of as well as the endings they wish will never happen.


Can we escape the invisible asylum?

Since their origins in the Poor Laws, our ideas about helping people have been tangled up with feelings about excluding or punishing them. To become the subject of state support was once to cross a physical threshold: the gates of the workhouse, lunatic asylum or long-stay ‘hospital’ for disabled people. Many of those thresholds have disappeared into folk-memory, but the idea of separating people into those who are citizens of their communities, and those who are wards of the state, remains threaded through our health, care and support services, in ways which have become so familiar they are invisible.

The rules and assumptions of the invisible asylum can be felt in ‘community’ services which feel nothing like community. They start with assessments and means tests which challenge people to prove their level of need, often at the cost of believing in their independence. They are felt in approaches that treat families who have managed on their own for years, as though they are capable only of being ‘difficult’ for the very services which ignored them before they reached crisis point.

This is not to decry the value of our underfunded and undervalued public services. But for our welfare state to survive, we need to be able to see it clearly: the miracles our services can achieve in the operating theatre and their small, devastating failures to see the person underneath the patient’s gown. There was a time when most of us could ignore those failures, hoping that we wouldn’t find ourselves in need of state support, or would need it only for a brief period which we prefer not to think about. But now we live longer lives, with longer periods of ill health, frailty or social isolation. Whether those years – and in many cases decades – in which we need state support will amount to a good life is not solely in the gift of GPs, surgeons or social workers. It depends for most of us on the relationships we have with everyone we rely on: our family and friends, alongside people paid to help us.

So we need models of community support which focus as much on ‘community’ as ‘support’. Working for nearly eight years with the remarkable people involved in Shared Lives and Homeshare has brought into perspective for me the inability of many services to escape the asylums of their origins. I have also witnessed supportive relationships which do not sacrifice the social for the care, which recognise interdependence is as important as independence, and that caring is an emotion before it is an activity.

In my forthcoming book, A new health and care system: escaping the invisible asylum (Policy Press, February 2018) I outline a possible health and care system which would take the ethos and practices of asset-based and community-orientated support models and build a system and a sustainable economics around them. A system which would demand, measure and pay for the goals – wellbeing, resilience, confident households – we all agree we want, but seem to accept we cannot have. The people who currently shape services have proved themselves incapable of designing approaches to achieve those more human goals. They can only be co-designed with the people who make long term use of services, their families and workers. They would offer us more but would only work if we were prepared to have more asked of us in return.

Those services would be organised at a more personal scale, perhaps eventually eschewing the traditional idea of an organisation entirely, so the book focuses as much on what needs scaling down to human size, as on scaling up the innovations of which we need more. It starts with those failures we should see as inexcusable, yet ignore or dismiss, but it is rooted in the belief that we can and do care for each other, and that the only future for our public services is to create spaces in which people with support needs, families and front line workers can have the relationships we would all wish to have.

You can order A new health and care system: escaping the invisible asylum from the Policy Press. To register to attend the launch at Nesta on 28 Feb, which has done so much to support our work, click here. The Northern launch event with Greater Manchester’s Chief Officer Jon Rouse is at MetroPolis on 20th March.

The right support at the right time

This is a guest blog from my colleague Ali Hall who works in our development team building new support for young people in transition to adulthood:

As 2017 draws to a close, I’m three months into my new role with Shared Lives Plus, helping local services develop Shared Lives for young people in transition. It’s been an enriching experience – a bit like walking in to a room full of people who think the same way I do, and quietly realising “So this is where you all are”.

The Care Quality Commission (CQC) recently published a report on mental health services for children and young people which says “The system as a whole is complex and fragmented. Mental health care is funded, commissioned and provided by many different organisations that do not always work together in a joined-up way. As a result, too many children and young people have a poor experience of care and some are unable to access timely and appropriate support.”

This fairly accurately sums up my experience of working with and within health, community and youth services. I’ve found that even where practitioners, including myself, can identify possible mental health concerns for young people, we may not know enough, we may not want to assume, or we may not have the time or the knowledge to adequately help. As CQC say this means we “may not be able to help children and young people access the right support at the right time.”

So, the big question is: who can? This is traditionally where family and close networks come in. But what about those people who haven’t got this kind of framework in place? This is exactly the kind of scenario where community cohesion, common sense and having a go-to person can provide a bridge to services.  It’s also where invested adults with an overview and understanding of that young person can help navigate the system and secure the support they need. Perhaps just as crucial, though, is applying these principles to prevention and recovery for people who have mental health issues of all kinds.

Shared Lives is one of these common-sense approaches.  It’s a model of care where adults and young people aged 16+ who need support and/or accommodation move in with or regularly visit an approved Shared Lives carer, once they have been matched for compatibility. Together, they share family and community life.

People make friends, get involved in clubs and activities, volunteer for causes and go on holidays. Feeling settled, valued and developing a new sense of belonging improve young people’s mental health – those intangible senses we have of being connected to others, of Continue reading

There for when things get tough

Alison Cooper, Shared Lives carer, blogs about why she supports people with mental ill health through Shared Lives. This blog was originally her speech to MPs and leaders in the health and social care sector at our parliamentary reception last week, kindly hosted by the Rt Hon. Alistair Burt MP, with speeches from our Ambassadors Michael and Dipan, Liz Kendall MP, ADASS President Margaret Willcox and Cllr Richard Kemp. Alison writes:

My life has been incredibly rewarding since becoming a Shared Lives carer, four years ago. For over 30 years I worked with adults with learning disabilities and people with mental health conditions. I have been able to see lives changed and people move into more independent ways of living.

alison and jonathan

We have always had an open house; I started sharing my home by supporting young foreign exchange students, before finding out about Somerset Shared Lives Scheme. I heard so much positive feedback about how vulnerable adults have the opportunity to live with and be part of families and be active within their communities. It seemed an ideal way to combine my skills and my home to potentially change someone’s life!

To become a Shared Lives carer I had to go through a robust process of application and induction. They took references, did security checks, checked my home. Somerset Shared Lives, my local scheme supported me at all stages and I built a professional relationship with my worker. Shared Lives carers work very closely with the Scheme and Shared Lives Plus who offer guidance and training where I needed it.

The first person who stayed with us needed lots of support. She would self-harm, attempt suicide and needed a considerable amount of emotional support due to an attachment disorder. Most of her life she had experienced rejection and instability. We were able to offer her a stable and loving home. As part of the matching process we were introduced to each other over a series of meetings, before she moved in.

Now I’m not going to tell you a story of how wonderful it all was and that everything was rosy, because it was one of the hardest times in my life. Not only for me, but for my family. It was challenging and exhausting, but with the support of the scheme and other professionals we gave her a time of stability, where she quickly became an important part of our family and community. She stayed with us for six months, before she moved on to a new home and since this we have stayed in contact with her and occasionally meet up for coffee.

So for someone with a mental health condition and attachment disorder I would say that’s not bad going is it?

Today (at the parliamentary reception), I am accompanied by Jonathon, who has been living with us for over two years. He has built really positive relationships with our family and now has an active week with his voluntary work and memberships to clubs and organisations. Johnathon’s main goal was to have some independence back in his life, so very shortly Jonathon will be moving into an annexe within our home so that he can have a more independence. Jonathon is a valued member of our family and community, making positive changes to his life and others.

The reason I am here today is to share with you the passion I feel for the work that I do and that so much can be achieved. Shared Lives is about supporting people to become a part of families and communities and with this comes, independence, self-worth and respect.

So! When you’re walking down the street next time and you see the unkempt person walking around that looks slightly odd, smelly and isolated from the world, take a moment to think that could be you, a family member a friend and all just because there was no one there for you when things get tough and you cannot cope with your world and others around you. That’s what Shared Lives are they are there for when things get tough.

We need to raise awareness of the benefits that Shared Lives creates and the positive work that is undertaken by many Shared Lives carers across the country. The work we do is life changing and rewarding for ourselves and for the people who come to live in our homes; their families too.

At a time when Local Authorities are struggling to provide services for vulnerable adults, due to rising costs, why is no one looking at Shared Lives, singing its praises, shouting about it? It’s quality, affordable care for vulnerable people. Councils and social workers, discharge nurses and commissioners need to use more of Shared Lives.

Stroke survivor Brian gets ready to move on

This story from Shared Lives South West shows how Shared Lives is providing great health care as well as social care. The story can be found here. It’s a great contrast with the story about room renting which hit the headlines last week – see my previous blog. We are working with NHS England and 7 local NHS CCGs to develop new health care options. Here is an extract from the full story with thanks to Shared Lives South West, who continue to inspire us all:

If you rewind a year, Brian Lee’s future looked bleak. While out walking in local woods he had a stroke and ended up in intensive care and endured a four-month hospital stay.
His health deteriorated further while in hospital as he also suffered two minor heart attacks and Brian was extremely weak.

The medical trauma left him with complete memory loss and his mobility was severely compromised- making it difficult for him to walk even short distances.

Fast forward to now and his life couldn’t be more different.  Thanks to the support and care he’s received from the Shared Lives team and ultimately his Shared Lives carers Jeanette and Alan Eames as well as his own determination, Brian is well on the road to recovery.

He’s recently managed to plan and go on holiday to Thailand and is preparing to move out to his own flat and live independently.

“I was so stubborn and determined. I had to prove to myself that I can still do things,” said Brian.

“Jeanette and Alan have helped me through it all. I was decrepit feeble creature when I arrived at their home in March.

“I couldn’t walk down the drive, now I can nip up to town. I never dreamt of being so independent again when I came out hospital.

Since moving in with the Eames’ family, near Okehampton, they have been there to support him every step of the way-  from helping him with appointments to liaising with his friends to help him move forward and sorting his medication and preparing him for his trip to Thailand, where he visited with no support. It was paramount his carers got him ready for the trip and made sure he was able to manage all his medication.

The Shared Lives team were also on hand to make the match with the Eames family. They charity’s Funding and Benefits team also maximised his benefits.

“They prepared me and made me ready for life outside,” said Brian.

“I think what was most important to me was to realise limitations early on, then I think you have to scale back on your expectations, then you can move forward positively.
“The main help was with my medication, that was a key thing. With Jeanette’s help there were visits to the doctors to make sure my balance of medication was right, as when I came out of hospital it was all wrong.

“I was on knock-out drops, I wasn’t living life as it should be. By 11am I wanted to go back to sleep again. I spent most of my time just sleeping. It was too much and there was a real temptation not to take them.

“Jeanette got it sorted out for me.”

“I also made sure he was taking the right medication at the right times to start. Now he has pots and has hang of doing it all himself,” said Jeanette.

Banking also became difficult as he struggled to remember numbers.

“If you ask me about a phone number or bank details and I wouldn’t have a clue,” he said.

With advise from Jeanette, they decided to change passwords to key dates that he could remember.

“That way I could do somethings myself with support,” said Brian.

The full story is here.

Ken the artist: Part 2

I shared Ken’s story courtesy of the Medway Shared Lives scheme a few days ago. I see that Ken and household have also been visited by government Minister, Tracey Crouch MP, who wrote on her Facebook page on 8 September:

I met two incredibly inspiring local ladies today – Sarah and Vicky. What is so special about them is they are carers with Medway Shared Lives, a brilliant initiative that is operated by local authorities across the country which provides longterm, short term or emergency homes for vulnerable adults.

Sarah invited me to their home to tell me about Shared Lives and what they do, the value they bring (both in terms of to the individual emotionally but also to local authorities financially) and of course the challenges they face. It was comforting to hear that Medway Council – Service updates and information has recently demonstrated their commitment to the scheme with a welcome increase in carer rates after several years of none. I met Stella (53) and Ken (70) who both have a learning disability and who Sarah and Vicky have hosted now for several years. It is as if they are part of the family and you could tell instantly that both Stella and Ken are settled and very happy.

I think the scheme is a brilliant idea and I wanted to take this opportunity to promote it more widely. If you think you could host an adult who needs just that little bit extra support so they can live independently rather than go into a residential care home, then please do click on one of these links:…/car…/becomeasharedlivescarer.aspx

Caroline’s story

This story was told to us by Sara Podmore who manages the Telford and Wrekin Shared Lives scheme:

Caroline, 26, had been in the Navy. She was being severely bullied whilst training to be a medic. She was initially thrown out of the Navy but after support from charity, Combat Stress, the Navy now supports her in getting help and treatment with severe depression, OCD and post-traumatic stress.

Initially Caroline had been allocated to a support worker in a supported living set up. She had some hours support each week but this was predominantly to help with paperwork. “I wasn’t well, I was basically put into the house and left. I ended up taking a massive overdose and then ended up being sectioned.

I had never heard of Shared Lives and my social work ended up introducing me to Linda and Owen, I don’t remember much from this time but I remember coming round for tea visits before moving in. This was April 2013.”

The Shared Lives team felt that Linda has the listening skills that would be needed to support Caroline through this period of her life. Shared Lives worker, Cath, vividly remembers those first visits. “Caroline looked so small, curled up on the sofa crying looking ill. She was in what looked like a trance. She really didn’t care.”

Caroline describes her OCD: “I stroke the light switches, I check the doors all the time. It’s better to laugh about it if I can. Linda tells me to leave it and she will check it, this really helps, otherwise I would sit by the door all night.”

Caroline says of her first few weeks living with Linda, “The family were so welcoming; it was amazing to be part of the family. I settled in really quickly. I didn’t feel like I was treading on eggshells, there was no pressure. I felt I could approach the carer and they would be non- judgemental.

“In that time I feel my confidence has changed. I’ve got a strength I’ve never had, I’ve had lots of encouragement, I’ve talked for hours with the carers, there is no such word as ‘can’t’.  I do a lot of laughing. I’ve slowly come off some of my medication too in the time I’ve been here which is great. I haven’t had any help from the mental team- Linda has been my mental health team, they have abandoned me. I’ve even managed to have contact again with my family. I see my mum again now who I couldn’t before as she couldn’t deal with me being ill. We do family holidays now too which is amazing.

“Now I work 26 hours a month and have completed my NVQ 2. I run now too. We all eat dinner together. Its important as I can chat, considering it’s their house its amazing they are always there for me. Things like Christmas are amazing we get so many gifts, I never expect it.

“At the very start of my journey I didn’t want to be in the world- but since coming into this placement it’s been great. I’ve not had a dip since I’ve been here and I’ve learnt to listen to my body.

I would tell other people when talking about Shared Lives: there is hope no matter how unhopeful you feel.”