When Denise Whiffin decided to set up The J’s Hospice in 2003, she had no idea that this charity would become such an important source of care and support for so many young adults with life-limiting conditions and their families across Essex.
She said: ”At his diagnosis, we were told that he’d live until his mid-teens. The family all decided that life is for living and he would absolutely have the best life. Nothing will put you off if you want to do it.”
As he grew older, his mobility decreased: he was using a wheelchair and scooter from the age of eight and by 10 he was permanently using an electric wheelchair. However, that didn’t stop the Whiffin family from travelling to France, Belgium and Holland.
Denise explained: “As a family we were constantly doing things together and making memories. His condition didn’t stop us, it just meant that we had to be more organised. Jonathan abseiled in a wheelchair, went canoeing and also tried ice skating on a specialist board!”
Back then there was no internet which made it much harder to find out what support was available. Denise rang a children’s hospice in Cambridge to ask if they cared for teenagers. “We thought that if you’re going to a children’s hospice you’re going to die. Once we’d been to visit, we realised how wrong we were and it became our second home. We could call them at any time for support and advice – I don’t know how we would have managed without them.“
As Jonathan got older, his health deteriorated and he eventually needed a ventilator, suction machine and special mattress to enable him to stay at home. He also spent time in hospital and at the hospice and it soon became clear to Denise that there was a lack of age-appropriate care for older teenagers.
“The hospice provided excellent care and the staff were lovely, but most of the children in there were under five so Jonathan had no social interaction with his peers while we were there for four or five days at a time which was hard for him.”
Sadly, Jonathan died in Broomfield Hospital in 2002, just before his 19th birthday.
For the first few years, Denise and her friends worked hard at fundraising until, in 2009, The J’s Hospice was able to appoint a Director of Nursing and a Fundraiser. Then the charity got CQC registration in 2010 and we began outreach working, becoming the first hospice service in the country to care for young adults aged 16-40 within the comfort of their own homes.
Denise explained: “The young adults that we met said that they wanted to remain in their homes with their family and friends doing what they enjoyed for as long as they could. The J’s ‘hospice-at-home’ service helps them to do this.”
Since then, our pioneering model of care has grown from strength to strength. The J’s Hospice currently supports around 100 young adults across Essex with a variety of complex needs, providing tailored nursing and emotional care, advice and social activities - including our Inspire! social group. We hold events to fund the care we provide including the Chelmsford Marathon and our annual Pedal for The J’s cycle ride. The J’s Hospice has recently joined with Havens Hospices to help secure our long-term future.
Denise is delighted with what The J’s Hospice has achieved in memory of Jonathan. She explained: “The J’s Hospice has taken best practice and our personal experience and used it to fill a gap to improve the lives of families across Essex which makes me proud. You can’t do things on your own and The J’s wouldn’t exist without my friends who helped at the start and everyone who has kindly supported the charity since then. Sometimes it has been a struggle but when you see the end result it has all been worth it. I am chuffed to bits and I know that Jonathan would be too.”