Published: 29/07/2004, Volume II4, No. 5916 Page 24 25

A commissioning crisis in paediatric nephrology is putting children with kidney disease at risk, argues Dr Mark Taylor

The government sees devolution of purchasing to primary care trusts as an important way of empowering local communities to choose healthcare appropriate to their needs.However, this is simply not working for tertiary paediatric subspecialties where there is no definable local community for a PCT to represent.As a result, some paediatric subspecialties are already in crisis, and there is no better example than children's renal services.

Most paediatric renal services were set up in the late 1970s after it became accepted that dialysis and transplantation were feasible in children. Those developments usually took place with regional or supraregional funding. Today there are 13 centres in the UK - 10 in England and one each in Scotland, Wales and Northern Ireland.

Paediatric renal care is a highly differentiated, high cost, low-volume specialty. Kidney disease in children is fortunately rare. Only about 100 children receive kidney transplants in the UK each year, about the same number that reach end-stage kidney failure. About 250 children are on regular dialysis.

While every child with kidney disease currently has access to renal services, this may involve considerable travel. For example, several face a round trip of 100 miles for hospital-based haemodialysis. Doing this three times a week for an extended period places an enormous burden on the child and their family.

Plans to reduce the number of centres offering dialysis would be certain to meet consumer resistance. But the unplanned collapse of a regional centre is becoming increasingly likely; in fact this happened in Cardiff just two years ago.

The level of care necessary to support a child with renal failure is very high. It became apparent early on that a specialised multidisciplinary approach was needed. The team requires children's trained nurses with expertise in dialysis techniques, transplantation (particularly live donation) and community outreach for home dialysis support. It will also include a paediatric renal dietician, psychologist, social worker and play specialist.

There has to be a seamless link to paediatric urology, child psychiatry and other sub-specialties as clinical need dictates. So it is not surprising that such services developed alongside other tertiary specialties in major paediatric centres.

There is a national approach to ensuring quality of service, and an ethos of setting high but clinically realistic goals. All centres participate in national audit through the British Association for Paediatric Nephrology. Training of paediatric nephrologists takes place through a national scheme under the Royal College of Paediatrics and Child Health and the lead postgraduate dean for paediatrics. Training for paediatric renal nurses is now available in two centres nationally in the form of a highly specialist diploma or degree.

So what's the problem? The risk is that the service is critically dependent on skills and manpower. A skills shortage very quickly leads to service disintegration and collapse.

Indeed, this is what happened in Cardiff, leaving the Bristol nephrology centre to bail out the Welsh service.

The risk is compounded when purchasers have little understanding of the service and where commissioning has taken place in an ad hoc way, if at all.

Most centres fear that the unscheduled loss of a central team member will effectively close their service.

This is particularly true for dialysis-trained children's nurses, but also for experienced paediatric transplant surgeons and paediatric nephrologists.

Moreover, psychology and social work provision is too often seen as a fortuitous addition to the skill mix and therefore relies on soft money. Gaps in provision strain other parts of the team and lead to clinical risk.

The medical manpower issue alone is a real threat. Paediatric nephrologists in all centres are fully signed up to a consultant-delivered service and acknowledge that the ratio of career grade to training grades will have to re-adjust. The most recent recommendations by the BAPN are for 67 consultants to serve the existing centres, a number endorsed by the RCPCH.

This would require an increase of more than a third. But an e-mail survey of nephrology centres earlier this year showed that trusts are unable to plan to take up newly trained consultants at the rate required.

By the end of 2006 there will be 18 muchneeded, newly trained nephrologists for whom trusts will not have the funding. This is because nephrology has to compete for a limited medical staffing budget with other paediatric tertiary specialities that are also facing staffing difficulties. The knock-on effect for future medical recruitment is obvious.

On the other hand, dialysis-trained nurses remain in very short supply and posts cannot be filled.

If one asked what would be the most appropriate and efficient organisations to commission and purchase children's renal services, the answer would not be 300 or so PCTs.

It is not reasonable to expect PCTs, many of which will not have a child with chronic renal failure on their patch, to engage in the complex issue of purchasing and commissioning children's renal services. The same can be said for many of the other tertiary paediatric subspecialties - they are simply beyond the horizon of many PCTs.

It has been suggested that leadership by some PCTs on behalf of others will solve the problem. This is risible.

The former regional health authorities took at least a decade to develop expertise in purchasing such services, and now that expertise has been lost.

In addition, the national service framework for renal services has been heavily criticised by paediatric nephrologists for failing to provide realistic targets on children - hardly a guide for novice commissioners.

This all calls for a new approach.

The greatest failure of the past has been the lack of a managerial link between manpower, skills and service.

Perhaps the Modernisation Agency, in whatever form it survives, will be able to act to forge these links.However it is to be achieved, this is an urgent matter. Children with rare, complex disorders have little political voice of their own.Without revision, the present structure for purchasing will ensure they will not be heard.

Dr Mark Taylor is consultant paediatric nephrologist at Birmingham Children's Hospital and chair of the specialist advisory committee (nephrology) of the Royal College of Paediatrics and Child Health.

Key points

Commissioning arrangements are not working for tertiary paediatric subspecialties, such as paediatric nephrology.

Staff shortages are leaving nephrology centres vulnerable to total breakdown.

More trained nephrologists are becoming available, but trusts do not have the funding to take them on.