We chose each other

This guest blog was kindly written by Jenny Smith for Shared Lives organisation, ategi. ategi runs schemes in Wales and Buckinghamshire. For films of ategi’s work, click here.

Angela is an ategi Shared Lives Carer. She and her partner Tina share their home with Debbie and Linda, two ladies with learning difficulties who, until they moved in with Angela two years ago lived almost all of their lives in care homes.

Although Angela’s background was in care work, she was working as a cleaner at Aylesbury’s Young Offender’s Institute when she saw the ‘ategi Shared Lives’ advert. She remembers that it said: ‘Can you give a loving, caring home to someone?’”

It seemed to make perfect sense. With Angela’s three children having left home, she and Tina were living in a four bedroom house. Angela wondered if this was perhaps an opportunity to go back to doing what she had always enjoyed most. Caring for people.

Encouraged by Tina, and by her friend Jen, Angela made contact with ategi. There were various important processes to go through before Angela could be accepted as a potential Shared Lives carer – to make sure that everybody’s wellbeing was taken into consideration and that their home was suitable.

Angela remembered a heartbreaking incident she witnessed in residential care, when two elderly ladies who were good friends were split up. One was sent to a different residential home and died only a few weeks later. Remembering this, Angela told Ategi that she would be happy to accept two people who might be unhappy to be separated.

Before coming to live with Angela and Tina, Linda and Debbie lived in residential care for almost all of their lives. Neither had ever completely settled anywhere. When they first came to live with Angela and Tina, they did not talk much, and often found it difficult to make eye contact.

Angela felt for Linda and Debbie, as she herself was painfully shy as a child.

“I understood how they were feeling. But they’ve changed so much since they came to live with us. They dress differently, they act differently, it’s a joy to see.”

Angela, Tina, Debbie and Linda now live together just like any other family. Cooking is a joint effort. They watch TV together in the evenings. They’ll have meals out and day trips. Debbie loves drama, she often sings and does very good impersonations. Linda enjoys arts and crafts.

Like any family, they have different timetables. Angela looks after her baby granddaughter Ellie on Tuesdays and Thursdays, Linda and Debbie go to day centres a couple of days a week and Tina works full time.

There are plenty of visitors, including Angela’s children and grandchildren. Angela’s daughter Becky brings Ellie to visit regularly, and Debbie and Linda love having a baby in the house. Relatives and friends often join them for Sunday tea or a Sunday roast. It’s a busy, happy household.

Angela and Tina make use of ‘respite care’ several times a year. While they have a break, Linda and Debbie will stay with a short-term ategi carer, who they know and trust.

Debbie and Linda’s lives have been transformed since they came to live with Angela and Tina.

“I am much happier living here,” Debbie says, “in the other homes I did not feel loved, and people were mean to me. Now I have a family who love me, and I love them.”

The household also share their home with two cats, Leo and Slinky. Leo came from a family around the corner, but he decided that he was happier with Angela, Tina, Linda and Debbie. It turned out that this suited everybody concerned, so he was allowed to stay.

“He chose us,” said Angela, smiling, “just like we chose each other.”

Closing the Winterbournes

The Department of Health (DH) has published its response to the Winterbourne View scandal. It contains some strong messages about removing the last institutions in the learning disabilities sector as soon as possible and uses Shared Lives in its report giving examples of effective practice.

We have been working with the DH to raise Ministers’ and officials’ awareness about the strong track record of community-based approaches like Shared Lives in helping people labelled ‘complex’ or ‘challenging’ to move out of institutions. With KeyRing, we have published today a short report giving examples of how Shared Lives and KeyRing networks can be used. The report identifies the main challenges as NHS commissioning practices and poor risk management, including a failure to work in partnership with families and weaknessess in the regulatory regime, which the DH proposes to address. The report makes these recommendations:

• All 1,500 individuals to be offered immediately a personal budget (if their care is social care funded) or a personal health budget (if funded via NHS Continuing Care) plus a brokerage and advocacy service.
• Professionals, including NHS consultants and commissioners, need to be educated about non-traditional approaches.
• Regulators to ensure that any care provided for more than a very short period of time demonstrates that it enables individuals to experience ordinary lives, unless there is a demonstrable safety or legal reason why this cannont be achieved.
• Exploring the use of payment by results and social finance investment approaches to bring alternative providers into the market, or to allow double-funding of experimental support packages for short periods.
• Raising the status of people with learning disabilities, in particular through achieving higher levels of employment including employing people in regulatory and inspection roles.

The DH report echoes a number of our recommendations and it is heartening to see that the government has pursued a strong line on this, rather than hiding behind the banner of ‘localism’. Local areas will be able to take a range of locally-decided approaches to closing the Winterbournes, but it’s right that closing them or reducing their use is not seen as optional. Full report: http://bit.ly/QTuhhG.

“It gives me a good feeling inside”

This year’s Shared Lives Plus conference was co-chaired by Paul Croft, who lives in a Shared Lives household and Richard Jones, a Director of Adult Services and one of our trustees. This is what Paul told the conference – he has kindly given me permission to re-print it here:

 “Good morning ladies and gentlemen.  I would just like to say how pleased I am to be here and would like to thank John Dickinson for asking me to Chair this conference.  I think it is a great honour and am delighted to be talking to you now.

I would like to tell you just a little bit about myself and how my life has changed since I joined Shared Lives and moved to Waterloo, just a few miles from here, to live with Geoff my carer with PSS and Bob who Geoff also cares for.

I was at Derwen College in Shropshire at the time and lived there in term time studying catering and office management.  At first I went to Geoff’s in the holidays.  I really enjoyed being at college but we were supervised most of the time and had very little independence. 

When I first went to stay with Geoff my care plan said that I wasn’t allowed to access the community without someone being with me.  I remember wishing I could be like Bob, who was a train driver before his brain injury and would go off regularly visiting places round the country.  At that time I even had to be taken to college at the end of holidays even though I had made the journey many times.

Geoff realised that my life was being restricted because of this and so we started to work on this problem.

I began by posting letters at the end of our street and then going to the shops and bank on my own.  We went out together on longer journeys but when I felt ready we decided that it was time to go on the train on my own.  The station is only 5 minutes from where we live.  I have a very good sense of direction and had no problem going places on the train and also learned to use the bus. Geoff and I have discussed this and both feel this was the real turning point in my life.

When I moved into Geoff’s permanently

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.”

Story extract from www.ThisisDerbyshire.co.uk: http://goo.gl/bbDbM

White Paper highlights Shared Lives and micro-enterprises

Today’s social care White Paper highlights our members’ Shared Lives and micro-enterprise work as ways in which the social care system can move from a crisis-only service, to one which is preventative and focuses on people’s well-being and how connected they are with those around them. It also notes that Shared Lives can help people live better lives whilst saving on average £13k per person, per year. If every region used Shared Lives as much as the North West of England, the saving in England alone would be £155m per year.

Here’s our press release:

New figures show opportunity to save £155m pa when people with learning disabilities move out of Winterbourne View style ‘hospitals’ into family homes.

Social care White Paper endorses the Shared Lives approach.

Although little-known, around 8,000 registered Shared Lives carers now share their family and community life with an adult who visits them instead of visiting a day centre, or moves in with them instead of living in a care home. Shared Lives outperforms all other forms of adult care in government inspections and is also cheaper, but remains scandalously under-utilised.

Today’s social care White Paper highlights Shared Lives as a key part of achieving a more community-based care and support system, which relies less on traditional paid-by-the-hour services.

New analysis of NHS figures by Shared Lives Plus shows huge regional variation in the use of Shared Lives. In the North West, Shared Lives represents 18% of all live-in/ residential learning disability support, whereas in Eastern England the proportion is only 2.5%. With each Shared Lives arrangement creating an average annual saving of £13,000, bringing every region up to the level of the best would quadruple the number of people with learning disabilities and other long term conditions living in Shared Lives to 16,000, saving the health and care system £155m every year and creating enough capacity to enable the closure of virtually all remaining ‘special hospitals’ of the kind seen in last year’s exposé of the Winterbourne View facility.

Alex Fox, Shared Lives Plus Chief Executive said: “Whilst social care often only makes the news for the wrong reasons, Shared Lives remains the sector’s best-kept secret. We know that people with learning disabilities can live happier, more fulfilled lives in ordinary family households than in large institutions, so it is scandalous that the NHS and some councils continue to spend our money on completely inappropriate institutions. In one recent example, a Shared Lives arrangement costing around £400 per week was used instead of a secure facility costing £5,000 per week. In another, a man previously labelled ‘too challenging’ to live outside of a residential unit he said he hated, moved to live successfully with a Shared Lives carer, saving the council £45,000 a year in the process.”

There is also huge untapped potential for developing Shared Lives with new groups of service users to make even greater savings. Whilst 23% of Shared Lives users in London have a mental health problem, five English regions offer no Shared Lives arrangements whatsoever to people with severe and enduring mental health problems, with institutional services still the norm.

Sian Lockwood, Chief Executive of Community Catalysts said: “The Shared Lives sector has doubled in size over six years but there are still only 4,310 people living in Shared Lives households. Half a million people live in residential care homes. Some councils predict that the cost of adult social care alone will represent 100% of their budgets within a few years, unless they make radical changes to the way they support vulnerable people. There is a Shared Lives scheme in nearly every council area in the UK but whilst some areas are currently doubling the size of their local scheme, others remain largely unknown and under-used.”

Alex Fox added:

Micro solutions to huge NHS problems

I spoke at the NHS Confederation conference yesterday about micro-scale and community-based approaches to health care, which was the subject of a paper I wrote for NHS Confed recently (“Working locally: micro-enterprises and building community assets“). The session was chaired by NHS Confed CEO Mike Farrar and packed with NHS professionals who, from their questions, were deeply engaged with community development and ‘assets’ approaches to healthcare. It felt like this agenda is finally getting some momentum in the NHS, which is very good news indeed. Here’s my bit from the session:

When faced with huge challenges like providing healthcare to an ageing population, it’s reasonable to assume that only huge solutions will do.

The problem with that way of thinking is that, whilst some healthcare activities need to take place on a large scale, achieving health itself happens, or fails to happen, on an individual level. Big buildings are sometimes the best place to treat illness, but achieving health generally happens in our own homes, workplaces and communities.

The only way to make sense of that conundrum (big challenges with as many different solutions as there are people) is to push as much of the power to design, control and deliver solutions into the hands of individuals, families and communities as possible.

Social care has gone a little way down this road, at least in its aspirations, if not always in its implementation. Healthcare has, in my view, barely started on this journey and the difference between the health and social care visions is striking in this respect:

The vision for healthcare is that patients will become informed consumers of the choices designed and commissioned for them by GPs and other professionals.

The emerging vision for social care is that citizens will not only be able to choose from the offers of providers and professionals, but also to take charge of commissioning and to pool their resources to design and own new services and enterprises when there is not an existing solution available to them.

Mix in healthcare circles and you will hear “clinical leadership” rather than “citizen leadership” and “patients” rather than “people”.

The comparisons I’m making are not entirely fair on the healthcare sector. If I ever need emergency brain surgery

When is Shared Lives just shared living?

Here in the Shared Lives sector we’re used to confusing the people whose job is to fund or purchase social care for the local council or NHS Trust. Shared Lives doesn’t fit the usual boxes, it’s not funded quite in the normal way, it has different boundaries and expectations, and so on.

At a recent meeting wiht the researchers at Kent and LSE Universities (the PSSRU unit) who are beginning to research the outcomes and costs of providing Shared Lives to older people, we started to discuss the small but perhaps growing number of older people who don’t have eligible social care needs (ie needs which the council will pay to have met), but who are interested in living as part of a family.

Some have arrived at the Shared Lives service via a mental health service because living in isolation has resulted in depression. Others simply don’t like the idea of continuing to live alone in a large house with family at a distance and are planning for a future when they be less independent. They have the option of selling their large house to move into sheltered accommodation, but aren’t sure that is what they are looking for.

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.

No more Winterbourne Views

I’ve just returned from Butlins in Bognor Regis (who says working in the charity sector isn’t glamorous?) where, with lots of help from volunteers from local and not-so-local Shared Lives schemes, a group of Shared Lives carers and people who use Shared Lives are taking a week’s break. We usually do this in Blackpool, and recently our colleagues at Aberdeenshire Shared Lives have organised weekends in Aviemore, but we thought it was time we came down South for a change.

Even Bognor, the UK’s sunniest place, hasn’t escaped the rain this week, but no one is going to let that stop them having fun. We were also doing some work. Colleagues have been hearing from people who use Shared Lives about how it has transformed lives which in some cases have been led in residential care or other institutions. Shared Lives carers are a dedicated bunch, and twenty of them crammed into our chalet for a session on personalisation and personal budgets yesterday, when they could have been enjoying some brief moments of sunshine. We discussed how Shared Lives can help people have more control and choices in their lives and I heard from some Shared Lives carers who were combining Shared Lives support with micro-enteprise approaches. In one instance, the carer offers Shared Lives in her family home and then, for people who want to move into a more independent setting, supported lodgings close by, so that she can be the consistent source of support as someone moves towards their own place.

Perhaps it was because I’d had the (too rare!) opportunity to spend time with people at the front line, and to see people with learning disabilities having fun and joining in with all the holiday activities that others were enjoying, that I felt particularly strongly when I noticed the current Mencap / Challenging Behaviour Foundation campaign to close down the remaining long stay ‘hospitals’ for people with learning disabilities and ‘challenging behaviour’.

There is no reason for these places to exist. However well run they are, large institutions will never be the best way for people to move back towards ordinary family and community life. The campaign is based on you emailing your MP, to ask her or him: Please write to the Health Secretary Andrew Lansley MP, expressing concern about the continuing existence of long stay institutions and ‘hospitals’ for people with learning disabilities and recommending that they are replaced with community-based alternatives (such as small homes, supported living arrangements and Shared Lives) as soon as possible. Emailing your MP takes seconds, thanks to Writetothem.com.

What was suprising about the Winterbourne View scandal was not, sadly, that abuse took place. When people are placed out of sight and mind, in institutions designed to contain and control them, there will always be instances of abuse. What was suprising was that such places continue to swallow up vast sums of public money, when cheaper, better alternatives like Shared Lives are well established and widely available.

Independence means….’walk’

Paul the artist

Painting for Sam

Paul and his paintings

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.