DEBRA UK calls for urgent action to protect vital care for Isla Grist as she moves into adult services
DEBRA UK is calling for urgent action to ensure 18-year-old DEBRA UK member and Ambassador Isla Grist receives the specialist care she needs, after arrangements for her transition from child to adult services reportedly fell through at the last minute.
Isla, from the Black Isle near Inverness, lives with recessive dystrophic epidermolysis bullosa (RDEB), a severe form of epidermolysis bullosa (EB). EB is a rare and extremely painful genetic skin condition that causes the skin to blister and tear at the slightest touch.
As highlighted in recent media reports, Isla needs regular specialist support, including dressing changes three times a week. Her mother, Rachael, has warned that any gap in care could put Isla at serious risk because much of her body is affected by open wounds that need expert treatment to help prevent infection.
The issue has arisen as Isla turns 18 and moves from paediatric to adult care. The family had expected a new provider to begin supporting Isla, but says the provider withdrew on the morning they were due to start, leaving them without reassurance that her essential care would continue uninterrupted.
Click here for the STV video interview about Isla’s story.
“Nobody should have to fight for basic care”
Rachael Grist has said the family has been trying for two years to secure appropriate adult care provision for Isla and has described the devastating impact that uncertainty is having on Isla’s wellbeing.
For someone living with severe EB, specialist care is not optional. Dressing changes can be lengthy and painful, but they are essential to help protect fragile skin, manage wounds, reduce the risk of infection and support quality of life.
DEBRA UK believes Isla’s experience highlights a wider issue faced by people with complex, lifelong conditions, including EB, when they move from child to adult health and social care services. Transition must be planned, coordinated and safe, with no cliff edge in support when a young person reaches adulthood.
Graeme Souness:
“This is not good enough”
A moment of joy, followed by the reality of EB
Earlier this week, Isla and Rachael attended the Royal Garden Party in Edinburgh, where they met Their Majesties the King and Queen. Isla described meeting The King as “surreal” and said the experience gave her a rare chance to take her mind off the daily challenges of living with EB.
But shortly after that special moment, Isla was back to the realities of life with EB — changing out of her smart clothes and into more comfortable clothing in the back of the car. It was a powerful reminder that behind public moments of courage and visibility, Isla’s daily life is shaped by pain, wounds, dressing changes and the need for consistent specialist care.
DEBRA UK’s call for continuity of care
DEBRA UK is calling on NHS bodies, local care providers and all relevant agencies to act urgently to secure Isla’s specialist care package and prevent any gap in provision as she moves into adult services. Isla’s case must be resolved quickly, but it must also drive wider change: no young person with EB should face fear, uncertainty or avoidable risk simply because they reach adulthood. DEBRA UK will continue to stand with Isla, her family and everyone affected by EB to push for the care, understanding and support they deserve.
DEBRA UK is the patient support organisation for anyone affected by any form of EB. Becoming a member is free, easy, and gives you access to our wide range of support and benefits. For more information, please visit Become a DEBRA member.