Inside out

Meg describes Shared Lives as helping her feel human again, after years in institutional care: “People who work with you on the ward care, but it’s their job. My relationship with my Shared Lives carer was different.” Meg works as part of our team and was with us at our very busy stand at the big NHS Expo conference in Manchester. We met well over a hundred NHS colleagues who found about how we are bringing Shared Lives into the NHS with the support of NHS England’s personalised care team. Meg interviewed the national Director for Personalised Care, James Sanderson, and Simon Stevens, the NHS’s Chief Executive.

Personalised health care is partly about people who make extended use of health services getting more choice and control over their support, through personal health budgets and other mechanisms, it is also about creating entirely new ways for people to get the support they need. Our new report with support from NHS England sets out how Shared Lives can be at the heart of this change which is going to reach 2.4 million people by 2024:

Jenny, 17, from Bolton, lived at home and is interested in art, and animals. She also struggled to interact with others and has a diagnosis of mixed mood disorder, anorexia nervous and self-harm. Her mental ill health eventually led her to staying for three months in a specialist
inpatient service. There, Jenny’s ultimate goal, with the support of the CAMHs team, was to recover her mental health, her confidence and her family’s confidence too. With the support of Shared Lives, Jenny could return home to her parents and they settled on regular respite, visiting a Shared Lives carer’s home and family every week, even though they initially thought it might be better for Jenny to live in with a Shared Lives carer. Jenny went for meals with each potential carer and then stayed with them independently as she felt comfortable and was able to relax. She told the scheme how proud she felt of herself for interacting with new people. Through the sensitive approach of Shared Lives, Jenny has gained in confidence, self-esteem, hope, independence and optimism. Although she still self-harms, it’s not as often and there has been no further accident and emergency visits – a pivotal milestone for Jenny and her family.

Our report sets out what we’ve learned about how Shared Lives can be a route to great health, particularly for people who have a complex mixture of medical and non-medical needs. It also shares what we’ve  learned about how hard it is to persuade busy NHS teams to understand, value and use a very novel approach to health care. At today’s NHS Assembly we talked with Simon Stevens and his colleagues about how we can develop a sense of shared responsibility for healthcare, which means sharing power, decision making and resources with the people who make most use of the NHS, and those groups and communities who are most likely to miss out or be excluded. We need all NHS leaders to follow Simon in seeking out and listening to people who know what good – and bad – healthcare means from the inside out.