Football legend Graeme Souness has criticised a Scots health board for leaving his good friend in limbo over her future treatment options. The 73-year-old Scotland hero fears budgets are prioritised ahead of care after learning Isla Grist, who has the rare skin condition epidermolysis bullosa (EB), will lose her care package when she turns 18.
The teenager, from the Black Isle in Ross-shire, currently receives care at home from paediatric services three times a week, including hours of painful bandage changes. She requires a specialist provision from trained nurses who understand the mental and physical complexities of her ‘incredibly fragile’ skin – often called butterfly skin. But the service will be axed once she turns 18 this summer, and NHS Highland left her family in the dark over what happens next.
Souness, who is president of the EB charity DEBRA, has now stepped in demanding answers. He said he could ‘not accept’ Isla has been left in the dark and added: ‘Isla has only ever known pain. There is now a question as to whether the support she’s relied on all her life, vital support that manages her condition as best as possible, will continue.’ He added: ‘This can’t be in question. I cannot accept this. This is life-giving support. And without it, what sort of life is she going to have? We must solve this for Isla and others like her living with the pain of EB.’
The teen’s mother, Rachael, said Isla has ‘one of the worst types of EB’ and added: ‘Until now, the service we’ve received has been excellent. But this lack of communication, this blanket silence, has been totally unacceptable.’
A spokesman for NHS Highland said it was ‘engaging directly with the family and progressing plans’ to ensure the care required is ready ‘as transition between child and adult services takes place’. Ms Grist added: ‘After I told them the Daily Mail were looking into the story, they appear to have suddenly rallied, and are now looking at whether a company based in London can deliver Isla’s healthcare. Nobody’s care should be dependent on the threat of media involvement. I’m now concerned they’re rushing a solution that needs careful consideration.’
