They are leading the way for their generation and future generations and deserve a good quality of life.
Established by St Elizabeth Hospice in 2015, Zest is a scheme which sees the independent Suffolk charity work closely with children’s hospices to ensure young adults have a smooth transition into adult care.
Supporting young adults aged 14 and upwards with progressive and life-limiting illnesses, Zest ensures all the young people, under its care, receive specialist support, tailored treatment and services needed to be able to enjoy life to the full.
Currently 36 young people and 124 family members utilise Zest’s services.
From its industry unique Short Breaks, which allows young people to take time out from their daily routine and provides vital respite for families, through to its parent support group and monthly X-Change evening social group for patients, Zest enables young adults with challenging conditions to fulfil their aspirations.
Whether this is to manage symptoms, access opportunities in the community or reduce loneliness by enabling them to have fun with friends.
Behind the continued success and evolution of Zest is the core staff team of Helen Finlinson and Catherine Markham.
“I chair an east of England group that seeks to improve support for those transitioning from children’s to adult’s hospice care. We knew there was next to nothing for young adults in our region, and found that many families felt like leaving children’s hospice care was like falling off a cliff edge,” explained Helen Finlinson, Young Adult Care and Transition Lead for Zest.
“At the time of transition many conditions these young people experience are deteriorating, when families are struggling and facing the unthinkable crucial support falls away. This is a travesty and we needed to do something about it.
“My role has given me the opportunity to visit services across the UK to learn about how we can improve this important transition for young adults in the east of England.
“I had a dream quite early on which was shaped by visiting a facility in Oxford that had developed somewhere for young adults to be cared for when they are too old for the children’s hospice.
“The services I saw were amazing and gave me the ambition that my colleagues and I could do the same in East Anglia. As a result Zest was born and we became the first adult hospice in our region to provide a dedicated service for young people.”
Born and raised in Suffolk, Helen studied as an occupational therapist before taking a range roles which saw her work take her to Russia, Zimbabwe, South Africa and London before returning to Suffolk in 2007 to join St Elizabeth Hospice.
Throughout her career she has been driven to constantly seek new ways to utilise her skills to help others.
It was after initially joining the hospice, as a Day Services Manager that Helen learnt of Amy-Claire Davies, a young adult from Wales living with an unknown complex life threatening condition. A prominent figure and spokesperson for others like herself, Amy is part of a ‘new generation’ of people who, despite being expected to die as children, are still alive well into adulthood thanks to medical advances.
“Amy-Claire’s story captured me and highlighted how there was a growing number of people who, courtesy of medical advancements, were living longer than expected but as a result our wider service provision across the country was not supporting them, essentially they were slipping through the cracks between children’s hospice care and adult hospice care,” explained Helen.
“We clearly needed to help them and this is what kick started our Zest journey and to working more closely with children’s hospices such as EACH.
“Throughout 2014, we met families to learn more about what they and their loved ones needed when they left children’s hospices. Crucially we took an honest approach, stating we wanted to do better for them, as at the time we were not doing enough to help the transition.”
This collaboration with local families shaped the Zest vision and programme ensuring the service was fit for purpose.
Helen added: “It became clear young people wanted not only medical support but also a service which addressed their social needs. They felt lonely and excluded from social opportunities, and the previously disjointed transition process only hampered this further.
“Working co-productively with families and local children’s services has enabled us to design the service directly in response to local unmet need. This is how Zest will continue to evolve. At its heart, Zest gives young people living with challenging conditions the opportunity to have independence from family and the chance to make friends and develop themselves as any other young person would.”
The long-term ambition of Zest is to continue expanding the service to help more young people across the region as well as to guide other adult hospices on how to replicate the programme in their own areas of the country.
“They are survivors of their generation and have defied prognosis. They are leading the way for their generation and future generations and deserve a good quality of life which does not rely solely on the care of their families,” said Helen.
“Young adult hospice care is completely unrecognised within commissioning funding streams, it’s a new service and this really is a battle to highlight its importance. Any contributions made towards Zest make such a difference to the lives of young people and their families, who have done incredibly well to come so far and deserve the ability to live life to the full.”
To find out further about Zest visit www.stelizabethhospice.org.uk/about-us/about-us/zest.