The new Royal Manchester Children’s Hospital opens this week at the heart of the Central Manchester and Manchester Children’s NHS Foundation Trust site. Mark Bradbury (Consultant Paediatric Nephrologist, Manchester), gave Maurice Savage (Prof Medicine, Belfast) and myself a sneak preview last Friday when we were at Bob Postlethwaite’s Festschrift to mark his retirement from clinical practice. It’s a fabulous building – lots of light and space. As Nick Webb, another of Bob’s colleagues and who opened the meeting, commented “it’s fit for the children of the North West”.
Nick had asked me to speak about transitional care because it is one of Bob’s passionate interests. I was pleased I was able to sit through Paul Harden’s fabulous session at the British Renal Society earlier in the week. For me it was the jewel in the crown of BRS 2009. The videos and discussions were extremely educational. I am delighted that Paul is helping us lead our NHS Kidney Care project to transform the quality of transitional services for young people with kidney disease.
Researching the whole area for my talk, what struck me most was just how much work has been done, particularly over the last few years. There is no shortage of evidence, research and “how to” documents and as I have blogged about before, there is now an educational e-learning package available. The challenge is now to go from print into practice!
The challenges are organisational and generic as much as, if not more than, kidney specific. Hospitals just aren’t welcoming to people between the ages of 14 and 26. The service is much more than the hospitals but overall the service does not seem to have considered this age group in its planning and delivery of support and treatment. “You’re welcome” is a project aimed at addressing that gap. The “You’re welcome” project team have developed explicit criteria, standards and now a self assessment checklist that NHS organisations can carry out to see how they are doing at being young person friendly. I would encourage this initiative to be discussed at hospital boards and hope to see Trusts with kidney services, both children’s and adult, going through the self assessment exercise and making that available to patients and the public. Of course we can’t blame the system without acknowledging that we are part of the system. Reflecting back on the transitional service that Bob Postlethwaite and I used to run, it was more like a transfer event than a graded, supported transition from the children’s hospital environment to the adult kidney services. It’s good that’s going to change and we are going to treat young people with more autonomy.
There was a fabulous, varied mix of speakers from Dr Mary Eminson (Clinical Lead, Greater Manchester CAMHS Network Board) speaking on “fabrication & induction of illness in children by parents” to Dr Rasheed (Bayo) Gbadeges (now at Duke University but formerly an ISN Travelling Fellow in Bob’s department) updating us on the “pathogenetics of nephrotic syndrome” and Adrian Woolf (recently appointed Prof of Paediatric Kidney Medicine in Manchester) on kidney development and the tantalising future where we hopefully will be able to talk more about a cure rather than lifelong treatment.
Bob closed the day commenting that change in the health service needs clinical leadership – integrity, commitment, vision and pragmatism. To which I might add persistence. But now to paraphrase Bob “it’s not about the building, it’s about the community that has now been brought together”, it is the start not the end.