Harry Singh is part of the Richard House Children's Hospice Young Adults Transition Group
Transition is defined as the period it takes for an adolescent to pass from using children’s services to accessing adult facilities.
This is often a troubling and difficult time for the life-limited individual.
Their own growing need for independence is complicated by the reality of leaving the comfort and familiarity of their children’s palliative care services and the carers they know.
And until now Richard House has not been able to provide the level of support that might be needed.
Director of Care, Vivienne Oram, explains: “We’ve got a number of young people who are age 19 and a couple who are older who we have had to stop providing services for. This is a a legal requirement because of our registration with the Health Care Commission.
"We have to stop providing services after the age of 19. We start having discussions with the families a year in advance so that they are aware and it doesn’t suddenly spring up on them.
"But for a lot of them they do suddenly find themselves in a situation where there isn’t anything.
"Transition is a hot topic at the moment because of the lack of services. It’s only in the last couple of years that people have begun to fully realise that these young people are living longer than was expected.
"And where are they going to go? The simple answer is: there isn’t any where in this area that offers ongoing care and support for young adults with palliative care needs.
Some hospices have young adult units attached to them but there’s nothing in the south - the closest one is Oxford.”
Like Harry Singh, pictured above, many young adults miss having a place to get away to – where they can go and hang out with their peers.
Harry Singh relaxing at a transition YAG night at Richard House Children's Hospice
Vivienne continues: “Adult hospices are about symptom management.They don’t offer the social respite which is what the young people want.
"These young people want an opportunity to be with like-minded people of their own age, to do the things that other able-bodied young people are doing.They want to go to the pub, they want to go to the cinema, to stay up late and go to parties.”
Transition is currently being explored on both a national and local level.
Peter Ellis, Richard House chief executive, is a part of these discussions.
He said: “There’s a growing need to cater for young people moving into adulthood who have palliative care needs.
"On the national level work has been instigated between the Association of Children’s Hospices (ACH), the Association of Children’s Palliative Care (ACT), Help the Hospices and the Department of Health.
"Within north east London we held a workshop in February [2008] to discuss the transition ‘pathway’ – a young person’s timeline.
"We are inviting representatives from the statutory and voluntary sectors, from both adult and children’s services, to come together and talk about how we can organise transition in this part of London.”
Meanwhile Richard House nurse Neil Williamson has been busy setting up a young adult group at the hospice.
Fourteen of our past and present users, aged between 17 and 25, have been invited to meet up for one evening a month to socialise and explore the issues facing them.
Neil says: “The plan is to try and get them together socially so they can have a set of peers and then, as part of that, to try and get them connected with those adult services they will be using in the future.
It’s also about trying to facilitate them to do what other young adults do, to have a good time, to enjoy their youth.”
Harry agrees: "I think there should [be something for young adults] because there’s not much out there.
"At the end of the day we’ve reached that age where it’s a bit weird to be here, when you’re 20 and there’s little kids around you, but on the other hand there’s nowhere to go. There’s absolutely zilch out there.
"The new group feels quite nice because, since I’ve been at college, I’ve had a lot more pressure as well with my work, doing my business A-levels, and it’s a nice little break.
Just to totally switch off. When I’m here I don’t have to worry about nothing. Even for a couple of hours it’s nice to be here and mess about and have a laugh.”
