That’s the title of a famous Lancet paper by Ian Houston and Bob Postlethwaite on the long term outcomes in childhood steroid responsive nephrotic syndrome. Bob and I ran an adult paediatric interface meeting annually for 10 years from 1993 and we appropriated “toddlers to twenties” as the strap line.
It is well recognised that brain development continues well into the mid to late twenties and in the 21st century many young people are in higher education or travelling way beyond the age of 18 years. Transfer of care between children and adult services might be a point in time but transition is a process perhaps beginning at age 11 or even earlier and going right through to the mid-twenties. Our services for young people do not reflect that – we need to change if we are to optimise care and outcomes. We know from the work of Alan Watson and others in Nottingham that many kidney transplants are lost in the months and years after transfer to adult services. A significant proportion of these graft losses are avoidable. But it’s not about the kidney – it’s about the person with the kidney, or with the person with cystic fibrosis or indeed the young person with any long term condition.
I have 3 children, Daniel, Kathryn and James and I was an adolescent once but certainly wouldn’t claim to understand adolescence! I was therefore very pleased to find the adolescent health e-learning webpage at e-learning for Healthcare (Department of Health in partnership with Professional Bodies and the NHS). Janet McDonagh (Clinical Senior Lecturer in Paediatric and Adolescent Rheumatology) signposted me to the site and is passionate about adolescent medicine. Janet eloquently makes the point that it’s the generic issues that are important for young people and it’s support of the kind youth workers can provide that can make the difference.
Lots of documents have been produced about the importance of linking paediatric and adult services but I think if you ask Susan Frade (Young Persons Group Chairperson, NKF) or other members of that forum you would be amazed, perhaps ashamed, at the experiences young people have had leading up to and following transfer.
We nee d to do something, I recommend: If you have not already done so, read the report from the Renal NSF Action Learning Sets on Transitional Services produced by the teams at London (Great Ormond Street) and West Midlands (Birmingham Childrens Hospital).
If you are a healthcare professional why not do the modular e-learning course. If you are a trainee that would give you competitive advantage.
If you are a young person with kidney disease I recommend you ask your kidney care doctors and nurses if they have done the e-learning course and if not, why not?