Derian House has become known throughout the Children’s Hospice movement as something of an innovator in setting new standards of excellence in children’s hospice care. Indeed much of the palliative and respite work initiated by Derian House in the years since it opened in 1993 is now emulated throughout the UK. A visible testament to the high standards of treatment practiced at the hospice are the highly sought after places on its professional days which seek to make Derian House care and treatment regimes available to other health care professionals. It is this reputation, not only for its treatment techniques, but also for its outstanding care system, which has led to its support of more than 200 families throughout the North West.
Possibly the very term, children’s hospice, conjures up a misconception that Derian House is concerned only with the care and support of very young children . However, the terms of its operation allow for the accommodation of young people up to and including 19 years of age.
For teenagers facing a limited lifespan through a life threatening condition the future seems uncertain indeed. Theirs is the more indeterminate future in many ways, for the nature of their illness means they are not dying in the immediate sense of the word but rather face a gradual but relentless deterioration in their condition. And yet these youngsters maintain a sense of humour, strength of purpose and determination which would defeat many adults in the face of similar adversity.
It is all too easy for people to see the illness, rather than the person behind the illness, and in the case of teenagers with a life threatening condition, all too easy to forget that these are young people with all the same difficulties, the same insecurities, the same self doubts as every other adolescent.
For a teenage girl undergoing chemotherapy, the hairstyle is not so much the issue as the lack of any hair at all, and the latest fashions are something to be put on hold until weight fluctuations caused by their treatment have finally settled down.
Many of the boys who come to Derian House are confined to a wheelchair, many of them suffering from varying forms of muscular dystrophy which robs them of their mobility. For them, a holiday with their mates is a distant hope, a trip to the pub becomes a major event, and the opportunity to chat up a girl, or consider a long term relationship with a girlfriend confined to the realms of imagination rather than reality in many cases. As one 17 year old said, "I just want a real girlfriend who’ll see me as a real boyfriend, not just someone she knows as a mate who’s in a wheelchair. I just really, really want someone to fancy me for who I am, not just because they feel sorry for me...."
It is as a means of addressing both the practical and emotional issues experienced by teenagers that the Care Team has adopted a specific policy and philosophy to go some way to meeting these very real needs, a policy which the Team will build on in the future in the structure of a dedicated teenage care programme and facility.
How you can help?
I am setting up a forum based website so that these teenagers and staff can get together, to share their problems and advice. The problem is thinking up a domain name. It must contain the letter D for Derian and must be short and quirky. Whoever picks the best name will get $5 for their troubles. Also if anyone wants to help us with anything then feel free.