New partnership helps terminally ill young people in Scotland spend their final days at home

by Harry Bunch Project Manager Kim, Leah and David Johnstone



Leah Johnstone, from Fife, had a rare chromosomal disorder, and was severely epileptic, suffering up to 200 seizures a day. She died age 17 in 2011.
She passed away peacefully at the Rachel House Children’s Hospice in Kinross, run by Children's Hospice Association Scotland (CHAS). However, her mother Kim (pictured right with Leah and husband David) says she knows Leah would have wanted to die in her own bedroom. This just wasn’t possible at the time, but a new partnership between Marie Curie Cancer Care and CHAS will give terminally ill young people in Scotland more choice about where they are cared for at the end of their lives. The Rest Assured Home Service will enable terminally ill young people who are over 16 and being cared for by CHAS to choose to be cared for in their own homes by Marie Curie Nurses. Nursing at home Once a young person identifies a preference to be cared for at home, CHAS will contact Marie Curie. A District Nurse will then arrange an introductory meeting with the young person and their family to discuss their needs before preparing a detailed at-home care plan. Working with the community nursing teams and CHAS, the service will deliver a coordinated package of care enabling young people to die at home. We know this is often where people would prefer to spend their final days and it can also reduce the need for them to spend long periods in hospital. We’re delighted that, across Scotland, young people like Leah and their families will now have more choice about where they spend their final days. Read more about Marie Curie's Nursing Service