Whatever it takes... Making people with even the rarest conditions feel comfortable

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Mum lived her entire life in chronic pain, but during her last weeks at the hospice, she was finally able to enjoy life pain-free and in comfort.”

Belinda Heron was born with the extremely rare Recessive Dystrophic Epidermolysis Bullosa (EB). It makes skin extremely fragile with extensive blistering and trauma at the slightest touch.

Belinda’s eldest son, Shane, said: “Mum lived in chronic pain, but would visit North Devon Hospice for pamper days and would come home with a renewed sense of confidence. She was also an extremely sociable woman and made some good friends through the hospice.”

When Belinda was also diagnosed with cancer, she knew she wanted to be at the hospice towards the end of her life. “We breathed a sigh of relief,” said her daughter-in-law Kathryn. “Being at the hospice meant her care would be specifically adapted to her needs, and it was beyond anything we could have hoped for.”

Shane continues: “My brother, who had cared for Mum for many years at home, helped show the nurses how to dress and bandage her skin so she was comfortable. Mum had even started writing a book about living with EB, and when her vision got worse, the nurses helped her to carry on writing her book in her own words. That blew us away.”

Belinda featured with her sons: Shane, Fred and Dale and with daughter-in-law, Kathryn

The hospice recently received a Cavell award in recognition of the exceptional bespoke care Belinda received during her stay. Shane concludes: “This award is testament to the team here. They all helped Mum be free from pain at the end, which is all we could ask for. On behalf of our whole family, all we can say is thank you.”