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

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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 “..in 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: http://www.sharedlivesplus.org.uk/en/publications-resources/free-publications/policy-research-campaigns/

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