The Royal College of GPs have recently published a new toolkit of resources for GPs, with the aim of helping them to support the needs of their patients who have autism. The toolkit aims to be a ‘one stop shop’ guide to autism for primary care professionals and commissioners, people directly affected by autism and the general public. It’s a welcome and helpful resource which tackles some challenges in accessing primary care which we hear about people from with autism who live in Shared Lives households.
In Shared Lives, an adult (and sometimes a 16/17 year old) who needs support and/or accommodation moves in with or regularly visits an approved Shared Lives carer, after they have been matched for compatibility. Together, they share family and community life. Half of the 13,000 people using Shared Lives are living with their Shared Lives carer as part of a supportive household; half visit their Shared Lives carer for day support or overnight breaks. Shared Lives is also used as a stepping stone for someone to get their own place. The outcomes can be startling, with people reporting feeling settled, valued and like they belong for the first time in their lives. They make friends (a third make five or more friends through Shared Lives) and get involved in clubs, activities and volunteering. Half of people using Shared Lives went on their first ever holiday as a result of the support and companionship of their chosen Shared Lives carers.
Shared Lives carers support over 13,000 people UK-wide, many of whom have autism as well as others who have learning disabilities, mental health problems, dementia and other support needs. Because Shared Lives carers often get to know the person they support more deeply than traditional services, they can help spot unnoticed health symptoms and support the work of doctors and their primary care colleagues. Shared Lives carers have told us about being the first to alert their GP to minor and more serious illnesses: “We alerted our GP to early cancer symptoms that we had spotted but others hadn’t” as one put it. Another says, “They thought she was deaf until I found that she hadn’t had her ears syringed for over five years. This was easily sorted by a visit to the practice nurse at our surgery and her hearing is fine now.”
As a younger person Ben spent most of his childhood in Foster and Residential Care. As a 29-year-old living with autism he had been living in an expensive “out of area” service for people with Autism Spectrum Disorder after previous placements broke down due to Ben’s behaviours towards himself, others and properties. Ben can find new situations, being around crowds and communicating his views stressful and challenging.
In May last year Shared Lives began a matching process for Ben to find a suitable Shared Lives carer. This included Ben meeting other members of the Shared Lives carer’s family who all play a part in support and inclusion of Ben in the household. Becoming a part of the Shared Lives family has changed Ben’s life. He enjoys a full and active week that includes horse riding, walking, ice skating and bike riding at a cycling scheme and he enjoys going to the art and drama classes. Ben’s Shared Lives carers provide him with a family unit of support and fun. With the focus now much more on enjoying life, Ben’s ‘challenging behaviour’ has reduced dramatically. He enjoyed his first New Year’s Eve with his Shared Lives carers at North Sea Ferries and more recently a holiday in a motor trip and a trip to Scarborough.
New research shows that autistic people die on average 16 years earlier than the general population and that gap in morality is increased if autistic people have learning disabilities.
Alex Fox, CEO of Shared Lives Plus said: “Shared Lives is growing rapidly as evidence builds that through Shared Lives people can live more independently, positively and for longer, accessing the health services they need more effectively. We welcome this helpful toolkit and are keen to work with the Royal College of GPs and the National Autistic Society to raise awareness of the benefits of Shared Lives as part of a range of more integrated and community-based support approaches.”