Squaring the circle for vulnerable people

Volunteers are making a real difference, says Sarah Reilly

Despite the shock and horror of Winterbourne View there are still thousands of service users miles away from the inner London boroughs with accountability. These people are some of the most vulnerable members of our society but most receive only one statutory visit a year, often by a duty social worker who knows no more about them than what they read in the previous review.

As some of you know from my previous Community Living articles*, Circles of Protection (CoP) began in 2013 as a two-year pilot between Islington Council and The Elfrida Society. The intention of the project was to recruit local volunteers to match with vulnerable people with learning disabilities living in residential care out of borough. Their role for the people they are matched with is to create a relationship not defined by pay, to improve their quality of life and be their eyes and ears and voice.

When I came into post in June 2014, there was one lonely but loyal volunteer. In May 2016 the team of CoP volunteer befrienders and advocates came to The Elfrida Society from around the country, to meet each other for the first time, to share learning and experience, and a meal. As I looked at everyone sitting around the table I could see how well the model works. But I am jumping ahead.

Holding my nerve

Following the two year pilot The Elfrida Society was granted an extension for a year, this came to an end in March 2016. Working with uncertainty is difficult, but as the deadline approached I held my nerve and continued to recruit volunteers. I needed to prove to the Islington commissioners that the CoP model works and was worth paying for. My monitoring officer was thorough and demanding, she believed in the work. I am extremely grateful to her as Islington Council has granted The Elfrida Society a CoP contract for the next four years.

Recruiting volunteers from a geographical distance, when you have no local knowledge or contacts is not easy; neither is finding people who have the time as well as the humanity to make a relationship with a person with complex needs. Most of the service users referred to CoP are non-verbal, on the autism spectrum, and have mental health issues as well as profound learning disabilities; most have spent their lives in institutions

 

The power of advocacy

You may remember Jack Brown, I wrote about him in Community Living Volume 29. Jack was in a wheelchair with no way of communicating his needs. By doing a quick drawing of mood faces I found he could read an image; the home manager was amazed. I asked her to create a bespoke communication passport; the picture Jack pointed to most often was the cup of tea. Sadly Jack died recently but when he was in hospital his befriender brought him photographs of London in the 1930s. He loved the photograph of a London bus; when his befriender left he was still clutching it with a broad smile on his face.

While writing this article I received an email from Nerys, a CoP befriender/advocate in Sussex; Nerys is concerned because Kathy, who she had befriended, recently had her molars removed and the staff informed Nerys that unless there are complications, the dentist had finished his work. Kathy is 66; as Nerys says, surely she has a right to dentures so she can chew her food properly, as well as for cosmetic considerations. Kathy has the communication skills and capacity to make this decision, but no one asked her. For many years Kathy had to share a toothbrush with other ‘patients’ in the long-stay hospital. We have progressed to providing people in residential care with their own toothbrushes but in some cases we seem not to have progressed a much further. Nerys and I are on the case; we may need support from Kathy’s social worker but if Kathy wants dentures, Kathy shall have them.

Mark is a new CoP advocate; he is retired but was the keyworker for Nathaniel for eight years. Nathaniel, who has cerebral palsy, is a big man and leans heavily to one side of his wheelchair, making his condition worse. He has been waiting for an appointment with the wheelchair service for a long time. Mark understands health and social care; he also understands Nathaniel’s needs. Nathaniel has now been assessed for a new wheelchair to be provided with extra support, as well as a table attachment for mealtimes. A meeting to look at options for a ‘soft chair’ for Nathaniel has also been agreed. Well done, Mark.

I’ve worked in advocacy for 15 years. CoP is one of the most useful projects I have been involved with. It is a creative and innovative application of the advocacy principle. Sadly, it is unique; other London boroughs have been interested in the model but have yet to develop this service.

Some of the CoP achievements are profound and include reductions in medications and improved safeguarding. Other successes may be considered mere details but for most of us it is the small things that make a difference to our lives; and when our lives are restricted, by illness, age or disability, they make a big impact.

Sarah Reilly is Co-ordinator of the Elfrida Society’s Circles of Protection Project. All names have been changed.