Q: Dear Donal, I thought to seek your opinion on the fact that whilst waiting time initiatives are all over the NHS, one of the most critical waiting times in Nephrology, namely that for initiation of RRT, is not so regulated.
We all run low clearance clinics and are well aware that the time from reaching an eGFR of 10 ml/min and the initiation of RRT is variable; some times unacceptably long resulting in patients starting RRT in some centres with eGFR around 5 rather than 10. We all know the consequences of late initiation of RRT. Lack of resources would be better addressed if pressure from the centre/NHS stipulated a given, acceptable, time frame. Your reflection on that important issue would be appreciated. Regards, Prof Meguid El Nahas, PhD, FRCP, Professor of Nephrology, Sheffield Kidney Institute, Northern General Hospital
A: Dear Meguid, Thank you for raising this extremely important issue. The outcomes for people starting replacement therapy are clearly related to the quality of care in the years and months before transplantation or dialysis and the appropriate timing of initiating replacement therapy. Clearly, if pre-emptive transplantation is possible that is the best option. Advanced kidney disease must be a frightening time for many patients, many things are happening and there are a lot of uncertainties. It is certainly a time of high morbidity and one of the risks is that preparation for or initiation of dialysis is inadequate or delayed.
Action Learning Sets to consider this part of the patient pathway and to examine the model of care ran in Cambridge lead by Dr John Bradley (Consultant Renal Physician, Addenbrookes) and York lead by and Colin Jones (Consultant Renal Physician, York) over the last year and a detailed report of the findings will be published soon. In addition, Simon Watson (who is a specialised Registrar in Renal Medicine) has been seconded to the NHS Institute for Innovation and Improvement where he is undertaking a Quality Improvement Fellowship, part of which is examining the systems in place for professionals to manage “the golden year” and in addition to consider the health literacy and information needs of people at this stage of the pathway. I think Simon’s findings would be of interest to the whole kidney community. “Living with Kidney Disease – what you should know”, the DVD recently produced by Kidney Research UK and the British Renal Society (under the direction of Steve Smith, (Consultant Renal Physician, Birmingham Heartlands) and Bridget Ward (patient carer)) with Big Lottery funding should go a long way to informing patients and their families about the treatment options. I would like to see a situation where there is sufficient capacity in the system and sufficient support for patients that so treatment can be tailored to the needs of the individual and delivered in a safe, efficient and timely manner. There are a number of other projects that I have recently initiated that may also help, at least in part, in achieving that state – the 18 week pathway for kidney disease and reviewing and updating capacity planning at national and renal network levels.
Getting the tariff “right” for dialysis is also important. You are probably aware that there is a renal PbR Project being lead by Bev Matthews (Renal Network Manager, West Midlands Renal Network) focussed on that issue. We have 17 Trusts engaged in that exercise and hope to provide robust costs from these Trusts for the statutory financial returns that form the basis of the reference costs used in the NHS. I see this payment by results exercise as the first phase of clinical directors, finance directors and commissioners working together to develop robust costing for other aspects of Stage 5 CKD management – particularly preparation in “the year before” replacement therapy and supportive and palliative care. In financial terms transplantation is managed separately.
The importance and power of accurate data can’t over stated and here we, in many units at least, need to code better and ensure our hospital statistics truly represent the activity we and our teams undertake.
The 18 week pathways may provide a mechanism for tracking the waiting time for dialysis – declining renal function and preparation for transplantation, conservative management or dialysis is a complex process and it would be naive to think that high level 18 week commissioning pathways could capture all the detail. If however they highlight the blockages and provide a means of measuring delay they will highlight the resources that need to be put in place to fulfil the NHS target of timely and appropriate initiation of dialysis.
I have always admired, perhaps even envied, Sheffield’s low crash lander rate, high transplant listing rate and forward thinking dialysis capacity planning – the fact that you feel such pressures and that the patients you manage can’t always start dialysis at the “right” time underlines that this is a national problem.