With the launch of Children’s Hospice Week 2022 on Monday 20 June and its theme of #ForTheChildren, comes an innovative, five-year strategy from Demelza Hospice Care for Children, shaped not only by the organisation’s senior leadership team but by the very children and families that use the hospice’s services.
Right now, there are around 90,000 children and young people with a serious or terminal condition in the UK and currently Demelza supports around 600 children and their families every year. Everything the charity does is #ForTheChildren and its new strategic direction has been, for the first time, directly shaped by the children and families who access this vital support.
Last year Demelza held a series of in-depth ‘Whose Shoes’ workshops, consulting with families, children, staff, trustees, volunteers and stakeholders to gather feedback that has been key in shaping plans going forward, embracing the progress made in delivering services through a pandemic, embedding new digital ways of working, as well as improving collaboration across the health and social care sectors.
The new strategy, which was launched to key stakeholders in April at Lambeth Palace – the seat of the Archbishop of Canterbury, one of Demelza’s Vice Presidents – is bold and ambitious, something that the new CEO, Lavinia Jarrett, is proud to be at the forefront of.
By 2027, the charity plans to increase its caseload of nursing and care referrals, in addition to boosting referrals to its other core services including family support, transition to adult services and bereavement care.
And the charity recognises the need to extend its reach across Kent, East Sussex and seven south east London boroughs it serves, connecting with healthcare professionals to make sure families can access the services they need when and where they need them.
Lavinia, who has worked at the charity for nearly 24 years, said: “The Reset and Recovery Strategy we put in place as an organisation to support our families, staff and volunteers through the coronavirus pandemic has drawn to a close and we are excited to present Demelza’s new strategy.
“Being effective and being responsive are key objectives going forward and we have actively sought the views and feedback from those who are the real experts: the children, young people and their families themselves”.
Lavinia continued: “At Demelza, we know how precious life is and we feel privileged to support families who trust us to care for those they love.
“Listening to our children and families is key and we will continue to develop ways to do this over the next five years. Putting children and families at the centre of what we do is something that is very close to my heart.
“We know that advances in medical science are enabling babies and children to survive with increasingly complex needs.
There is a growing population of young people aged 16-25 who need support with transition into adulthood and into adult services.
We also know that the prevalence of children who may need hospice care is highest in the under 1 year age group. With passion, performance and pride at our core, our aim over the next five years is to help more children and families than ever before.”
The strategy is aimed at helping people like Denise and David from Kent, who care for their granddaughter Cameron. The family are supported by Demelza’s care at home service and also access facilities at the hospice in Sittingbourne.
David said: “We are so happy to see that so many of our priorities as a family are also things which are important to Demelza. Cameron is now 15 years old and we are thinking about the possible future ahead for us and her. It is so comforting to hear that Demelza will be focusing on the transition of children who are more frequently surviving in to adulthood.
“It is also encouraging to see that, as we see so many more children like Cameron, who need the kind of support that only organisations like Demelza can provide, that they are working to broaden their appeal so that their services are accessible for all.”
Demelza’s new strategic goals are:
- Be Effective
- Be responsive
- Extend our reach
- We are Demelza
- Strengthen and sustain
The full strategy is available to view at https://www.demelza.org.uk/strategy-2022
Children’s Hospice Week is the only week in the year dedicated to raising awareness and funds for children’s hospices across the UK.
- Right now, there are almost 90,000 children with terminal conditions in the UK. And as more children live longer with their conditions, there’s increasingly urgent need to support them and their families.
- For every parent, the health and happiness of their children is the single most important thing in the world. But the reality is any child could be born with or develop a terminal condition.
- Demelza provides specialist care and emotional support for children with serious or terminal conditions, whether in family homes across East Sussex or in the family hospices in Sittingbourne and Eltham. Demelza can help families and their loved ones enjoy their time together, for as long as they have.
- The unique support we give comes at a price, and at present we’re only reaching 1 in 10 of the children that we could help.
- As a charity, we’re almost entirely dependent on the generosity of our supporters to provide the funds that keep our services going. Please help us make sure every family and child can depend on us when they need us most.