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‘Who decides what my care looks like?’

This was the question posed at an event held by the All-Party Parliamentary Group (APPG) on Health and Social Care on 24 February 2020, writes Rebecca Viney-Wood, policy officer. The purpose of the event was for care providers, people accessing care, other stakeholders and politicians to get together in one room and discuss the future of social care. In particular, the APPG was keen to discuss who decides what care looks like, and how as sector we can ensure that people who require support have a say in their own care.

The APPG event took place in Portcullis House near the Houses of Parliament, shown in the picture above. In the grand atrium, politicians and civil servants in suits drank coffee and worked on their laptops. The centre of government in Westminster feels very different to the day to day lives of people supported by Shared Lives arrangements, those who access Shared Lives respite and day services, and Shared Lives carers. Therefore, it was great that several people attended the event have been supported within the social care system. These attendees were willing and able to express their views, both about what social care looks like now and how it can be more co-productive in the future.

Claire’s story

The attendees of the event who have first-hand experience of being supported by the social care system highlighted the fact that care needs to be tailored to meet an individual’s needs and wishes. For example, living alone in your own accommodation is seen as a long-term goal for many currently being supported, and it works well for some people. Take Meg for example, one of our Shared Lives ambassadors. Meg now lives alone with her dog after growing in confidence whilst living with her Shared Lives carer Hayley.

Yet living alone is not a suitable option for every person who is technically eligible to do so. This reminded me of Claire*, a young woman I met a few weeks ago who has a learning disability and epilepsy, and who has been living alone with extra social care support for around three years. Claire sadly has no immediate family and had previously lived in supported accommodation with other people with learning disabilities. As part of her care package, Claire spends time with a Shared Lives carer once a week, which she really enjoys. When I met Claire, she expressed to her support worker and Shared Lives officer that she no longer felt safe living alone, despite her epilepsy alarm system which means an ambulance is called when she experiences a seizure. Claire wants to live with other people, so that she is not alone.

Source: CoProduce Care

Claire’s story shows that in practice it is not always easy to ensure that those receiving care have a say in what that care looks like. It is important for everyone who is supported by Shared Lives to be given the opportunity to express their opinions regarding their care, and to have their views and wishes respected as far as possible. As the people who have experience of the social care system said at the APPG, ‘nothing about me without me’.

*The name and identifying features of the person discussed in this blog have been changed in order to respect their privacy,