The new website, Care Compass, is user-led and designed to be a hub for useful information, advice and support, where people with life-limiting conditions, their families, friends and carers can navigate the available services more easily as well as provide support for each other.
The website, which has been developed with a grant from the government’s Small Business Research Initiative, with help from Terrence Higgins Trust and Huntington’s Disease Youth Organisation, aims to create a community of like-minded people, including medical professionals, who can share the issues that matter most to them.
Emma Snow, St Joseph’s Hospice Finance Director, who came up with the idea after personal experience, said: “People with a life limiting diagnosis want to be empowered to help themselves. Many still want to work, go out, manage their relationships and live life in much the same way as they did previously and they don’t always find it easy to talk to professionals. This website aims to give people the opportunity to find other people going through similar experiences, support each other and live their lives to the full. The more people who engage with the website, the greater the impact it will have.”
The website, which is currently offering services to people in East London, was shaped by people who live with life-limiting conditions, some of whom use St Joseph’s services. They shared their expert insight into what it is like living with a life-limiting condition, adding their experiences and life-stories to the website.
Jean Eveleigh, one of the people with a life-limiting condition who helped shape Care Compass, said: “I have to spend hours trawling through dozens of websites looking for good quality, relevant, up-to-date information; everything from where to go on a date night that is wheelchair accessible, to the latest treatment options for my condition, to someone to offload on rather than having to upset my partner. It struck me as absurd that nowhere had thought to develop a site that brought all of these needs together under one website. This is what Care Compass aims to be, a one-stop-shop to help you to live with the health condition affecting your family.”
St Joseph’s Hospice will soon be applying for the second phase of the project which is a national roll-out of Care Compass. Care Compass is looking for national and regional services that provide help and support for people with life-limiting conditions to become involved with Care Compass. If you are interested in becoming a partner to develop the Care Compass website, or you’d like to post information about your services on Care Compass, please contact Paul Griffiths at firstname.lastname@example.org or call 020 8525 6000.