The shelter of each other

Our colleagues and members in Northern Ireland hosted an event for commissioners exploring how Shared Lives could be developed as a new form of short breaks, day support and home from hospital care for older people.

We are grateful to Fionnuala McAndrew of the Health and Social Care Board who helped convene and kick off the day and to Mary Hinds, of the Public Health Agency, who summed up beautifully, drawing on an Irish proverb I’ve not heard before: We live in the shelter of each other.

I’d be willing to bet that that rings true for you as much as it does for me. For years now, the ideal living situation through the eyes of long term care and support services has been independent living. It’s not a bad goal, particularly when contrasted with institutional alternatives. But that language doesn’t tend to figure in our own descriptions of what we dream of, unless or until our independence is at risk. When people describe happiness, for most (admittedly not all) of us, it involves having people  we can rely on. In other words, we dream of interdependence, not complete independence.

This can be an uncomfortable idea for long term support services which are wary of ‘creating dependence’. Few of us would want to be dependent on a service. But perhaps it is not so much that becoming dependent is ‘inappropriate’ to support relationships, but that the way we construct support relationships can be an uncomfortable fit with our naturally interdependent nature. People working in social care often find their roles put strict limitations on the definition of ‘care’ and are too rushed and impersonal to feel ‘social’. This incompatibility between the human nature of both people who give and those who receive long term care is at its most stark when the intimacy of personal care is carried out by a succession of strangers.

Shared Lives is not about dependency in the pejorative sense and for some people it is very much a stepping stone to getting their own place. Half of the people using Shared Lives Continue reading

Julie’s way of being

Julie, 44, has Down’s syndrome and lives in a Shared Lives arrangement with Pauline and Joe from Lancashire.  In her own words, Pauline talks about Julie’s dramatic weight loss.

“Julie came to live with me 6 years ago and she was overweight, a size 20+, she is 4ft 9’ and is now a slim size 12. Her mother, who has since died, used to give Julie finger foods and would put a towel around her neck, then Julie would go to her room every night at 6.30pm and she wouldn’t let her mum in the room. She now feels like this is her home, so she has come a long way and I also feel that she was in day services and I think they held her back.  They kept her using Makaton sign language and they said she would fall over all the time and I noticed it was because she had ill-fitting shoes on, so I got her shoes like trainers with Velcro and one thing and another and started getting her a bit more modern in the way she dressed and just spent more time on her.  I felt like people didn’t talk to her properly. So I sat her down and said ‘Right, do you want to be treated like a little girl or a woman?’ And it was one of the first times she spoke and she said ‘woman’ and I said ‘right, well, here goes’ and that was it!  I didn’t talk to her like a child and started to ask her questions instead of just telling her what to do;  like ‘what shoes would you like to wear today?’ and gave her choices instead.

Then we had a talk with her and got the learning disability team out – the health team, to talk to her about healthy food and slowly, it was a long drawn out process, we got her onto healthy eating and fruit juices etc., and not bingeing on party food and sausage rolls and pies.  But we noticed at times little packet of crisps and biscuits and things would go missing, but I didn’t mind at the time because it was something she had to do, she obviously did that when she was at home but what I did was I made sure there weren’t lots and lots of packets of crisps lying around.  I made sure she wasn’t eating too much junk food and that way she was able to do what she was used to doing and it is not called ‘pinching things’ it’s called ‘Julie’s way of being’. So everyone who comes to you, you have to see what they are used to doing and you have to understand their ways.  So Julie really started developing once she had built up a bond and she could trust me.

She loves herself now, she loves having her hair done – she has this lovely inverted bob, before they used to have her hair in rollers and she looked a lot older, you wouldn’t recognise her from old photographs.  She likes herself, she likes who she is.  I don’t think she liked herself before – she never looked at herself before.”

Into the light

The mother of ‘Chloe’ wanted to share her feelings about the Shared Lives support her daughter has received from Shared Lives carers Lorna and Graham. I’ve heard so many powerful testaments to the work of Shared Lives carers, but Chloe’s Mum’s letter to Lorna and Graham knocked me for six:

I wanted to put pen to paper so to speak to share with you both my thoughts, my family’s thoughts and some of the insights Chloe (not real name) has shared with us all. It is my wish for you to pass this on for others to help describe, explain and promote the shared lives experience.

It was Chloe herself who first made her decision to try this way of living.  She was at perilous time in her life following the tortuous and complex two year long break up of her family. She found herself as she described “ the darkness”.  She talked about wanting her own life but couldn’t see a way forward through her learning disabilities and the people obstacles in her way.

The service provided a safe place. This became Chloe’s and the rest of the family’s most used word in those early days. Chloe talked open about the trials and tribulations but feeling safe was the foundation. It was evident that she was developing an understanding of co-operation and feeling a part of things. She had often felt unheard and excluded in the past from small choices to major decisions and her frustrations were often evident with her “melt downs” (her own words). Now her emotions have now stabilised there have been no more melt downs – aggressive outbursts or incidences of challenging behaviours.

Chloe was beginning to talk about discussions, informed choices and decisions Chloe was part of even though sometimes they didn’t suit her on the day. These days she is more willing to compromise – thinking of others needs, will negotiate, and empathise and has the skills and improved vocabulary to do this.

She is heard, supported and has begun to make sense of the times before Lorna and Graham. She started to talk about things with her brother and sister and realised from the beginning that her family could be part of her shared lives -or not – if she so wished – it wasn’t a case of one or the other.

She had started to take an active part in her meetings and felt empowered, meetings in which she used to sit through in almost silence. More than once she described Lorna and Graham as bringing her  …'”into the light!”  She used to talk about things in her life and would want everyone’s opinion of what she should do – she now lets us know what she would like. Chloe has been able Continue reading

If I could have picked a family, it would have been you

I was privileged to take part in our Scotland conference this month, at Stirling University. As usual, the Shared Lives carers and service users made the day. We heard from Ethel, a Shared Lives carer for 25 years, and from her daughter, who has also become a Shared Lives carer, as have both Ethel’s other children, now all living in different parts of the country. The first gentleman Ethel supported came to her for 15 days, when his Dad was ill. His Dad sadly died during his stay and he decided that he would just “stay with Ethel until I get married”. He still lives with her. Having had an entirely sedentary life at home, he discovered a love of all kinds of sport and a new confidence to go out and about. He still hasn’t got married, but does have a steady girlfriend.

Megan, in her early 20s, reflected upon her experience of being supported by Lynn, a Shared Lives carer with the Fife Supported Lodgings scheme which arranges family-based care for care leavers. Megan, who has lived independently for a few years now, said “I would have been an absolute wreck without them”. Lynn said, “If someone had told me I’d be doing this work 10 years ago, I would have laughed at them. I’d raised kids and that was enough. After ill health, I was trying to get back into work when I found about Fife Supported Lodgings. A highlight for me was when the first young man I supported said to me, ‘If I could have picked a family, it would have been you.’ Now all my family are involved: when Megan was between houses with a new baby, she stayed with my daughter for a couple of weeks and we’re all going to Megan’s daughter’s first birthday party later on today.”

Shared Lives in Derbyshire

Nathan , 37, who works in Derby City Council’s employment team to support people with learning disabilities and James  33, a bank worker, are part of the council’s Shared Lives scheme. The couple, who married in 2006, support Debs and Dave, who live with them as well as another lady who comes to their house for short breaks.  James, says, “We were conscious for quite some time that, although we were having lovely lives doing what we wanted when we wanted, we were not giving anything back.”

James said: “Debs and Dave both say they want to live on their own eventually and, to do that, you need to be able to cook and clean for yourself and budget your money. That is why, from Monday to Friday, we have things they do like ironing, to get into that routine.” When asked about the rewards of being a Shared Lives carer, Nathan says, “It is the simple things like seeing them get the bus without needing anyone to help them. It is seeing their confidence grow.”

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Countdown to the White paper

Despite stories in the press about delays to the White Paper, as far as we can tell, it remains on track for publishing in ‘the Spring’. ‘Spring’ in civil service speak lasts well into June, of course. We’ve got a fair idea of what’s going to be in it, because the government involved lots of people from the sector in drafting the early ideas and strongly welcomed the ideas we came up with around prevention and the help which people and communities need to tackle problems like isolation, which services cannot fix.

As well as setting the tone for the whole sector for years to come, a good White Paper needs one or two eye-catching initiatives, which capture the imagination as well as the spirit of the policy changes. The impact of complex policy changes can be difficult to grasp by those not immersed in how social care legislation and regulations work, but who nevertheless have strong views on what good care, support and inclusion looks like. Sometimes relatively small-scale changes can exemplify the broader intentions.

So whilst I could take a good guess at the range of policy shifts we’re likely to see in the White Paper and I’m not expecting to be surprised by its ‘narrative’, here’s a rather specific idea which I’ve no reason to think is anywhere in it, but which I think should be considered:

Close as many as humanly possible of the remaining 100+ ‘hospitals’ for people with learning disabilities.

These are the institutions, often ostensibly used for assessment of people considered ‘challenging’, which were made infamous by the BBC Panorama expose of Winterbourne View. The recent CQC inspections of these institutions which followed that exposé  are not finding that all are havens for abuse –far from it. There will be many dedicated and skilled staff working in such places – I used to be a care assistant in a residential home for people considered challenging and I came across no abusive staff and plenty of entirely lovely people working long hours for little money.

But CQC has been finding a significant number of places which are completely unacceptable: buildings which smell of urine; services which lack the proper safeguarding procedure and protection for people’s rights; people with no care plans; worryingly lax use of restraint. The reason such places should not exist is not, however, that they are places where abuse is more likely, although I believe that the risk of abuse increases when people are managed as part of a large group and spend little time outside of an institution. The reason such places should not exist is that, even if they are run brilliantly, a 20 or 30 bed ‘hospital’ in a non-residential area with locked doors and the conflicting support needs of large numbers of ‘challenging’ people, may be able to deliver warmth, food and shelter, but can never deliver the basic quality of life which we take as read: real relationships with people who aren’t paid to be with you. The chance to be a part of a community. ‘Ordinary’ home and family life. You’re much more likely to learn the skills and attitudes you need to take part in ordinary life when you’re living in an ordinary family home. Although the stated purpose of care offered in these ‘hospitals’ is to assess people’s needs, in reality, some people spend months or even years living there because no alternative has been found.

But Shared Lives and other community-based forms of support are in almost every area and have a track record of supporting people considered challenging (see Alan’s story). They are not even more expensive than these institutions – commissioners often make huge savings through helping someone switch to Shared Lives. The heavy lifting of closing long stay institutions has already been done for us. There aren’t many left: let’s make this White Paper an opportunity to close that chapter of history for good.

Independence means….’walk’

Registered Shared Lives carer, Sheila and her family have recently started to support Paul, who is 50 this month.

Sheila has helped Paul to get a bus pass, to learn to use public transport via Birmingham’s ‘Community Options’ scheme and about road safety, so that he can make use of the community for the first time in his life. Paul has started to access dental services to address long-standing dental health issues, which has improved his overall health. Paul has now bought his first bicycle and goes out for long bike rides with Sheila and her husband along New Hall Valley Park, enjoying the countryside. Paul’s regular day-time activity is helping on the allotments – ‘New Roots’ – run by Birmingham City Council.

He has become a visible and popular member of the community, having been supported to join several clubs and to get to know local shopkeepers, staff in the local library and even bus-drivers now know him by name. Sheila encourages everyone to ‘look out for Paul’ whenever he is out and about in the community on his own. Paul doesn’t have a lot of speech, but when asked if he understands what ‘independence’ means, he smiles and says ‘walk’.

Paul also joins in with activities, events and parties with Sheila’s family. Paul’s new passion is art and with the help of Sheila’s husband Tony – a day centre officer with a degree in illustration –  Paul  has found a talent for painting. The photos above are of Paul and Paul’s work, including his painting of cabbages on his allotment (entitled cabbage patch) which now hangs in pride of place in Sheila’s daughter Sam’s hallway in Surrey.

Setting the pace in Derby

Promote Ability Community Enterprise, known as p.a.c.e, is a community interest company set up by Debbie Jones and Craig Fletcher.  Through their 23 years of experience of front line work for the City Council and nine years working with voluntary and community organisations they felt there was a gap in services for disabled people to improve their health and quality of life choices.

From the seed of the idea, developed whilst sitting in the pub, along with donations, a helpful benefactor, support from friends, family and the community and a lot of hard work they now have a centre, with a gym, workshop and café.  They have over 20 clients per week, both self-funders or personal budget holders who buy assistance with support planning, life coaching, woodwork tuition and gym instruction from the three full time workers. Also their café is open to the public.

In the future they are eager to move towards rehabilitation services and are looking to work with local health services to develop preventative and re-enablement support. Find out more about them at:

Shared Lives in Harrow

During the Queen’s recent visit to Harrow she was presented with a book of photographs of inspirational people in the borough, including Robert Ward, who has learning difficulties and is part of Harrow Council’s Shared Lives scheme. Mr Ward, who will celebrate his 50th birthday in May with a visit from his parents from New Zealand, was looking forward to the visit: “I am really excited about meeting the Queen. I have got a Union Jack tie to wear.” Mr Ward lives with Shared Lives carer Bob Gilbert, with the two sharing family and community life rather than Mr Ward living in a care home.

Bob, who is a similar age to Robert and has a care background, said: “Robert has had such a great year. Last year, his friend died and he had a big change by moving here, but now he has so much more independence. He is like one of my family and my friends are now his friends. He has done a travel training scheme so can now get the bus and walk to different places by himself and is training two days a week at a nursery, growing plants. The difference between his confidence now and what he was like last year is incredible.”

This story is from the Harrow Observer.

User-led brokerage

Here’s a guest blog from Simon Taylor (,  who supports our micro-enterprise members:

“It’s sometimes hard to stay positive about the changes in social care, but meeting Becky Daykin from Notts Independent Living Consultancy ensures that you will. Despite the challenges, along with her business partner Sarah Moakes, Becky has stepped from the world of social work to be a part of the practical changes ensuring personalisation can offer real choice.

Together they now run a new micro-enterprise which combines their thirteen years of experience to assist people in setting up and manage Direct Payments. They offer support and advice on being an employer, recruitment, setting up payroll and employment contracts etc. They also offer training for personal assistants, organisations and corporate businesses about disability, equality and deaf awareness. All their staff are disabled and receive either Direct Payments, a Personal Budget or Disabled Students Allowance.

Becky herself is Deaf.  Others often see this as a barrier but it is not the barrier she is most concerned about when she speaks of her experience in running her business, where the real struggle is with Local Authorities to make better use of micro-enterprises in delivering small local services.

She commented, “Too often Deaf People are seen as not able to manage their own budgets and are directed by the social work professionals towards managed budgets Continue reading