Ali Kay
Director of Engagement and Advocacy, Same but Different
Sam Jones is teenager living with a rare progressive muscle-weakness condition. He lives in North Wales with his mum, Kathy (both pseudonyms). His progressive condition has a significant impact on both his and his family’s wellbeing. Many rare conditions present significant care co-ordination issues, not only in managing the many medical appointments with multiple specialists but also in accessing appropriate social care, education and emotional support.
Competing needs make care challenging
Families like Sam’s are not only faced with the logistical and sometimes bureaucratic challenges of meeting medical and care needs. Each family member is impacted by the rare condition (diagnosed or undiagnosed) and each also has their own life issues and health matters to juggle too. Sam’s parents face significant physical and psychological challenges themselves, making it difficult for the family to prioritise competing needs.
In Sam’s case, support included home visits and liaising with no less than 15 different professionals across health, education and social care to bring about change for the family.
The Rare Navigator provides families with support
The Rare Navigator service offered by Same but Different offers constructive and practical advocacy support to families like Sam’s. This has helped the family to cope better with the varied and cumulative impact of his rare condition on their life. It has also helped to build and mend broken relationships with service providers so that their teams can carry out assessments and get the right support in place. In Sam’s case, support included home visits and liaising with no less than 15 different professionals across health, education and social care to bring about change for the family.
The Rare Navigator Service is the initiative of Same but Different, a community interest company using the arts for positive social change. They established the Rare Navigator service in September 2019 after their collaborations with families affected by rare conditions highlighted significant problems resulting from a near total lack of care co-ordination support. The service currently works across rare conditions in North Wales, ensuring no families with ultra-rare conditions are left behind. It is supported by the Steve Morgan Foundation and The National Lottery Community Fund Wales.
