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

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

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.”

“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 Continue reading

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. Continue reading

A better front door for social care

This week we’re really pleased to be publishing, with some of our closest allies, a paper which sets out how the government could make a better ‘front end’ for social care. In other words, what happens when someone first encounters the social care system. It uses real people’s experiences of assessments and discussion about eligibility for services to ask what those processes do to a person’s independence and to their relationships with their family and community. At the moment, whilst most of use the NHS fairly regularly, and our local GP is often a familiar and friendly face for the NHS, our first experience of social care is usually in a crisis, and can be first and foremost about how much money we have (Are you poor enough to be our problem?) and about our needs, rather than our choices and the resources and relationships we might be able to draw on (Are you needy and vulnerable enough to be our problem?).

The imminent (early July now??!) White Paper is an opportunity to create a system which feels more like a partnership, and less like a battle.

The partners in the paper include ourselves, our sister organisation Community Catalysts, In Control, Inclusive Neighbourhoods and Partners in Policymaking. We’d all be interested in your reaction to these ideas – if the government is really going to create a friendlier, more cooperative and collaborative social care system out of the funding-squeezed battleground many experience, they are going to need all the ideas and help they can get.

See “Redesigning the front end of social care” here:

What’s all this talk of ‘assets’ about?

One of the recommendations which received the warmest welcome from the government, during the discussions which fed into the social care White Paper which we are expecting in the coming weeks, was the idea that we have to move from a ‘deficit’ to an ‘asset’ based view of people. It’s unfortunate that those are horribly jargonistic terms which need some explanation, and which are open to misinterpretation.

‘Deficit-based’ refers to the fact that, at the moment, you may have to prove how bad things are (and often, how little money you have), before you can get a response from the social care system. There’s a reason for this: if services aren’t ‘rationed’, more people might want them and there’s not enough money in the system to pay for them. The problem is that forcing people to prove how little they can do is demeaning and can actually add to the problems a person was facing in the first place.

An ‘asset-based’ approach says that we should always look for people’s strengths, resources and potential to solve their own problems. This has to be right: my kids’ school is open to everyone their age and the teachers are focused entirely on helping the children to grow and become more independent and responsible. It’s a happy place. I feel slightly less positive about my GP surgery – it’s there for everyone, but I only go there with a problem I can’t fix and I’m in the hands of experts who know stuff I don’t understand myself. Social care is often a place of last resort. It is becoming more asset-based, in that Continue reading

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.

Local Area Coordination

How can we kick start radical change in a care and support system which is suddenly starved of money? Perhaps an equally valid question is, “How can we not?” This second question can only be asked if we genuinely believe that there are ways for communities to face their challenges which aren’t entirely reliant upon services.

Local Area Coordination (LAC) is now at the core of care and support in Australia, after twenty years of development and numerous evaluations. Ralph Broad, who has worked in Australia and the UK remarks upon the fact that outcomes in Western Australia are better than those in the UK, despite the fact that even a recession-hit UK is still better resourced than Western Australia has ever been. LAC is a way of recognising that people are not passive “clients”, “service users” or “customers” of a social care system. It puts professionals in new roles: working alongside people. Local Area Coordinators in each small locality have an open door, access to information and small amounts of funding, but most importantly a remit to nurture local solutions and keep people strong. They help people to access services where they are the only option, but they see services as the last thing to consider, not the first.

LAC is not an initiative to ‘drop in to’ the existing system, with its preoccupation with gatekeeping services for those deemed needy and vulnerable enough to qualify. It is best used as a way to transform the whole system, starting with Continue reading