Hospice Care Week, which this year runs from 10 October, gives hospices the opportunity to shine a light on the incredible work they do in their local communities.
Demelza Hospice Care for Children is one such hospice and Nick, a nurse and dad from Tunbridge Wells, was so inspired by the care his son received from the local charity that he wasted no time in applying for a job as a Demelza registered nurse.
Nick says: “Having worked in the NHS for 15 years, I was looking for a new challenge and seeing first-hand what everyone does at Demelza to help support us inspired me to apply to become a nurse at the Kent hospice.
Having Kit has opened my eyes to the services offered by a children’s hospice – it’s not just about end of life support but things like respite, care at home, local playgroups – that everyday support that makes such a difference to us as a family”.
Nick and his wife Katherine, both 35, had been Tunbridge Wells residents for over 35 years when their world was changed beyond measure last year. Their previously healthy 18-month-old son, Kit, suffered a two-hour seizure.
Katherine said: “Our lives were completely turned upside down. We spent three months in hospital and were told Kit wouldn’t survive.”
Kit did survive but the family were thrown into a new world of uncertainty and fear, having to learn how to care for their severely disabled son.
The team at Demelza stepped in and the charity, who offer expert care and emotional support to over 650 children with serious or terminal conditions and their loved ones across the south east, including the Tunbridge Wells area, offered a lifeline to the young family.
Katherine continued: “I can honestly say Demelza have been the only organisation who’ve supported us. They swept us up in a huge hug and said ‘what do you need from us, we’re here.’ They’ve helped us come to terms with our new life.”
Demelza supports parents like Katherine and Nick in improving their wellbeing, independence, knowledge and resilience whilst empowering them during the most difficult of times.
Nick said: “We’ve accessed respite care at the hospice in Sittingbourne, which is honestly a lifeline. We never get a full night’s sleep, so to entrust Kit into someone else’s care for that break is wonderful and we desperately need it.”
Kit also attends Demelza’s Little Dots, a stay and play group for under fives held at the Harmony Centre, Tunbridge Wells and the family access Demelza’s practical support volunteer service to assist with transport from home to hospital for Kit’s multiple medical appointments.
Nick said: “Until you need the service you won’t understand how stressful driving a disabled child to London for an appointment is. Other transport services are available, but you can wait over six hours to return home which is cruel to a toddler with additional needs.”
Demelza also runs a care at home service in Tunbridge Wells, providing a valuable two-hour window of respite for families in their own home, allowing parents the simplest of pleasures, such as spending time together or with siblings, popping out for a coffee with friends, or grabbing some much-needed extra sleep, knowing that their child is in safe hands, cared for in their own home by a specialist nurse.
And as Katherine prepares to give birth to her second child in December, Demelza have stepped up once again, offering to have Kit while Katherine is in labour.
The subsequent support they received from Demelza has been a lifeline and after witnessing the care his son has received, Nick jumped at the chance to become part of the nursing and care team that has kept his young family afloat during the darkest times. Nick, who starts at the Sittingbourne hospice next month, said:
“The care we receive for Kit and as a family has been outstanding – I can’t wait be a part of the team delivering that vital support across West Kent”.
Demelza Hospice Care for Children:
- 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 – our five-year strategy will see us extend our reach to support more families, whilst increasing our offer for those already accessing our services.
- 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.