Helping young people with incurable illnesses live positively
- Credit: St Elizabeth Hospice
As part of the East of England Co-op's #EastTogether campaign, in partnership with Archant, head of inclusion and development Helen Finlinson discusses how St Elizabeth Hospice’s Zest service is improving the quality of life for young people with incurable conditions in Suffolk.
The number of children and young people in England with life-threatening conditions living to age 19 is increasing. Published in 2020, a study conducted by the University of York titled Make Every Child Count found that young people in palliative care are living longer – but this presents problems about how to transition young people into adult care while ensuring that their distinct needs are met.
St Elizabeth Hospice is an independent local charity offering access to supportive care, palliative care and bereavement care for patients and their families throughout East Suffolk, Great Yarmouth and Waveney. In 2015, the hospice launched Zest, a specialist care service that supports young adults aged 14 upwards with progressive and incurable disease to get the most out of life.
“We support more than 3,000 people each year at St Elizabeth Hospice, with about 40 young adults on our caseload with Zest,” says head of inclusion and development Helen Finlinson. “These young people are smaller in number, but their needs are high.
“Life-sustaining technologies like ventilation and gastrostomy feeding, as well as advances in treatment for conditions like cystic fibrosis and muscular dystrophy, mean that young people who would have been cared for in children's hospices – and never needed an adult hospice – are starting to live longer.
“The problem is that young people have very limited support and quality of life when they become adults. That's a real travesty because if you beat the odds to survive your condition and become an adult but then the service isn't there to give you a good quality of life, that just seems really unfair.
“Greater life expectancy means they should ultimately be accessing adult hospice care, but we soon realised that the adult model was not right for young people and their families.”
In partnership with East Anglia’s Children’s Hospices (EACH), Helen and her team started to work with families to co-produce their ideal service, adopting the ‘nothing about me without me’ approach, which ensures medical decisions that directly affect a patient are not made without consulting them.
“Together we worked on their priorities to develop the model of care they want. The experts are the young people themselves. We've been educated by them to develop a service that meets their needs.
“Their top priority was to meet friends,” Helen explains. “When you have complex care needs, it often means you are socially isolated. You spend your whole life going to appointments and medical clinics and managing symptoms. For a young person, that is not all they want to do with the years they have left.”
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Services include a monthly youth group called X-Change, a family drop-in, arts and crafts, music events, comedy nights, cooking, gaming, inclusive sports like those in the Paralympics, and other forms of entertainment. Zest also provides in-house counselling, music therapy, spiritual care and physiotherapy, and has retail stores in Colchester and Ipswich.
“To our understanding, this is a unique service in the UK,” Helen says. “We aspire to grow this model so that our services are available to all the young people that need them.”
As a charity, Zest relies on funding and public donations to achieve its ambitious objectives.
“We don’t like talking about money because you can't put value on quality of life, but the service ultimately costs money. So, any help with fundraising for Zest is hugely appreciated.”
Donations enable St Elizabeth Hospice to continue to provide unique services like Short Breaks and the newly launched Zest Days.
“We’re trying to offer different experiences that these young people haven't had before,” Helen says. “Zest Days provide a weekly social activity to meet up with other young people, get peer support and work on some of their aspirations. Whereas Short Breaks offers overnight weekend stays to enjoy some independence and do things like sleepovers or visiting the beach, which can be hard to do with challenging health conditions.
“For many of the young people with severe disabilities, the sensory benefit of being at the beach, hearing the waves, smelling the sea, tasting fish and chips, is really beneficial, while also giving families a much-needed break from caring.
“Every day is an important day to make memories and get the best out of life, so days at the beach together with friends, having a really good time is priceless.”
For more information, please visit www.wearezest.org.uk
Watch more episodes from the #EastTogether series at www.eastofengland.coop/easttogether