Re: Stepping up to adult services
I read this article with great interest. As a public health professional in the 1990s, this was a problem widely discussed and subject of much research in professions loosely called, 'allied to medicine'. As a health professional, parent and carer of a child who contracted a fatal illness aged 5, and who survived into adulthood, who came to be labelled as a 'first generation adult survivor', I was struck by how far transition services were well-developed in some branches of acute and chronic medicine, but only in those areas where the disease was well known as a childhood illness and was well supported by dedicated and well funded voluntary organisations, such as juvenile onset diabetes and leukaemia. Outside these areas, there was little understanding of the need for 'transition' services, in many areas of adult medicine.
From the 1990s onwards, awareness of the need for such services became more widely accepted across all branches of hospital-based adult medicine, and all disciplines began to establish transition programmes.
As a parent, I gradually realised that transition from paediatric are to adult care addressed only half 'the problem', as I became increasingly aware of a less easily managed difficulty, the problem of entering and adjusting to normal adult social life. This meant for establishing independent adult life, exemplified by finding work and possibly a partner, which she was sufficiently well to do, with a long-term chronic illness that was both invisible in its literal sense, but also invisible in the eyes of society, especially to other young adults. The difficulties my daughter encountered related to her finding it simply too difficult to explain the unusual behaviour patterns forced on her by the constraints of her illness in a simple comprehensible form that discouraged further, what was for her, over-intrusive questioning.
I was lucky enough to have both a degree in a scientific discipline and in public health, and had been able to gain, through approprisate voluntary work, the trust of colleagues within the specialist branch of medicine, to use hospital patient data. I registered for a PhD, gained appropriate hospital research and development department and ethical approvals, for my research protocol, and collected both quantitative data and qualitative relating to the experiences of patients aged 16-30 in 14 English specialist hospital units in 2006-7. I funded my own research, as it was important that this should be both independent, and seen to be independent. The finding were published in 2012, and presented in person to staff in participating hospitals. As expected there was more interest from specialist clinicians in the quantitative data, and more interest from their psychology and nursing colleagues in the qualitative data; a subjective observation, but one of possible interest readers?
Should this email be deemed of interest to readers of the BMJ, I am happy to contacted by email. Helen Lewis (PhD).
Competing interests: No competing interests