The mother of a teenager with a rare and severe skin condition, epidermolysis bullosa (EB), is raising concerns about a critical gap in her daughter's care as she approaches adulthood. Isla Grist, who requires regular specialist nursing to manage her condition, faces the prospect of losing essential support when she transitions from child to adult services on Thursday.
Isla's mother, Rachael Grist, has been in discussions with NHS Highland for months to secure continued care. An agency initially identified to provide the necessary treatment informed the pediatric team of their withdrawal on the morning their services were scheduled to begin, leaving the family in a state of uncertainty.
"We have been 'abandoned' by the health board," Ms. Grist stated. She emphasized the life-threatening implications of interrupted care, explaining that if Isla's bandages are not changed regularly, the open wounds covering 70% of her body could become infected. "Any infection that goes untreated could kill her," Ms. Grist added.
Isla herself expressed anxiety about the situation, highlighting the emotional toll of fighting for basic needs. "Nobody should have to fight for their most basic needs in terms of their care," she said.
The teenager recently had an experience that offered a temporary reprieve from her daily struggles when she met King Charles and Queen Camilla at the Royal Garden Party in Edinburgh. Isla described the encounter as "surreal" and "unbelievable," noting the royals' interest in her condition and the King's kind interaction with her.
Former Scotland footballer Graeme Souness, who is president of the EB charity Debra and participated in a £1 million fundraising swim in 2023, accompanied Isla and her mother to the event. He has been a supporter of the family's efforts.
A spokesperson for NHS Highland stated that while they cannot comment on individual patient cases, they take the transition from children's to adult health and social care services "very seriously."