The plight of young adults with life-limiting conditions has been put back in the spotlight by a study from the University of Dundee, which calls for better training and support for them and their families.
A medical success story, the increasing number of people with childhood conditions who were not at one time expected to survive to adulthood, but have done, pose a challenge for services. More accurately, services pose a problem for them - not least Children's Hospice Association Scotland, which announced in 2013 that it would cease providing respite care and other services for over 21s.
Reasonably, CHAS judged its facilities were not suitable for young adults, nor was it appopriate for this group to be in an environment intended for children.
The charity for children, which commissioned the research from Dundee, has a transition team in place which is working to ensure existing service users are not left without help.
But the Dundee study finds huge uncertainty about the future for terminally ill young people and their families. It says children's hospices are not best placed to meet many of the needs of young adults in the 15-25 age range and better services are needed to help them live in the community. Families also need greater support, with some having difficulty 'letting go' of young adults who have always been dependent but are seeking more independence.
The policy change at CHAS, along with a campaign by 29 year old Duchennes Muscular Dystrophy sufferer Robert Watson put the issue on the political agenda two years ago. Mr Watson spoke to his own petition at the Scottish Parliament, which calls for respite facilities for young adults such as himself. But while the petition was passed to the health and sport committee, and the issue was taken up by then minister for public health Michael Matheson, he is now justice secretary, and progress has been slow.
The problem, of course, is that for some of the young adults concerned, time is very much of the essence. Existing hospice facilities for older people are as inappropriate as children's hospices to meet the needs of young adults who want to get the most out of the life they have. As Libby Gold, Associate Nurse Director for Care at CHAS, says, “Perhaps most concerning, is the uncertainty faced by young adults who have surpassed their life expectancy and want to explore their full potential, be it in a professional or personal context, like anyone else their age."
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