Ride for Toni

This is where your money is going

St Elizabeth Hospice opened in 1989 and since then has helped over 24,000 people to live the life they choose, for as long as they can. St Elizabeth recognises that each person’s condition is unique and therefore tailors their care to meet individual social, emotional and spiritual needs, as well as managing physical symptoms. Their aim is to help people to live well until they die and support those affected by the loss of a loved one.

When supporting adults St Elizabeth is highly experienced and highly effective at offering this bespoke care, they recognise however that there is a gap in the current care offering that needs to be addressed. That gap is how young people living with a life limiting illness are cared for.

When young people grow too old for children’s services, the level of care they receive often drops, and they may be moved into age-inappropriate adult services. This can be a daunting and traumatic time for them, where they are forced to leave people, teams and services that they may have relied upon for much of their young lives.

St Elizabeth Hospice have big ambitions for enhancing their young adult services in future and they aim to change the current care landscape by offering bespoke services aimed at young adults. They believe that young adults with progressive illnesses should be given the chance to enjoy life the same way that their peers do, as far as possible. 

The process has started and 32 young adults regularly attend the hospice’s X-Change group: an alternative day service based on a youth group model. This allows younger patients to socialise with their peers and meet hospice staff in preparation for transfer of their care. They have access to a gym, music, art and beauty therapies and fun recreational activities, including trips to the beach, the zoo or even the pub! This enables them to form friendships and build independence, while also offering support for their siblings and parents.

Young adult, Josh, says, “I was a patient at EACH – the local children’s hospice – for years, and it was really hard for me and my whole family when I had to leave because I was too old. I used to stay there for about 20 nights a year. My mum and 17-year-old sister have both got serious medical conditions. It would be really good in future for me to be able to have real respite care at St Elizabeth Hospice so that I could stay overnight, but I know there isn’t funding yet.”

Young adults are asking for breaks away from their parents to socialise with others and gain independence, whilst parents need a rest from the demands of 24/7 care. In East Anglia there is a shortage of age appropriate short break provision, and respite providers are unable to meet the complex medical needs of young people with progressive illnesses. 

The monthly X-Change group costs £35,477 to run each year. The estimated cost of offering a single weekend respite break for two young adults is £4,930, which means that a short-break respite program could cost over £240,000 to run each year. St Elizabeth Hospice relies on charitable funding, so every donation you make in Toni’s memory will enable the hospice continue providing and growing its services.