Wednesday 25 March 2009

Climbing for kidneys

I bumped into Tony Ward at the World Kidney Day celebrations and was pleased to learn of progress with his planned climb of Mount Everest. Tony is doing better than Lance Armstrong and his bid to win this year’s Tour de France following Lance’s involvement in the pile up that fractured his collar bone during the first stage of the Vuelta a Castilla y Leon race in Spain. I have known Tony for many years – I remember his probing questions when I discussed his underlying kidney disease and its likely prognosis. Tony is a remarkable individual and his attitude and perseverance embody the concept of choosing renal replacement therapy to live the full and active life he wants.

It is an inspirational story, clearly we all can’t climb Mount Everest but we do all have mountains to climb. Success in climbing mountains it seems is similar to success in transplantation and dialysis – essential ingredients are good preparation, safety and being as fit as possible in all other aspects of health.

Tony is climbing the North Col of Mount Everest in May, the expedition is leaving on 25 April and if you want to find out more about Tony’s training regime, the support he has received from the medical and transplant teams, read his update or have a look at the website. Money raised from the expedition will go towards funding renal research programmes that are backed by Kidney Research UK.

B E W A R E ! Talk of twice weekly dialysis

I have heard mutterings in various quarters that instead of planning for the known demand in dialysis, the thought of twice weekly dialysis is being entertained. The paradox of people working on developing a best practice tariff for dialysis whilst others are considering dropping below an acceptable and safe standard would be funny were it not for the harm that twice weekly dialysis can do. In my mind it’s akin to prescribing an inadequate course of antibiotics that may lead to drug resistance or super-infection or of using an artificial heart valve replacement that has a low reliability compared to alternatives.

We are aware that demand for dialysis and particularly haemodialysis is increasing at 6-8% annum until at least 2030. In the priorities and planning guidance set out in the 2008/09 Operating Framework the Department therefore included renal replacement therapy as an example of service facing sustained increases in demand and as such an area which Specialised Commissioning Groups should pay particular attention to.

Patient choice and multiprofessional preparation for renal replacement therapy (or conservative kidney care) are key to good outcomes form the basis of standards 1 and 2 of the NSF. They require a balanced portfolio of dialysis provision including home therapies which appear to have particular advantages in selected groups. Many will be aware of the emerging evidence that frequent daily or long hours haemodialysis confers quality of life and survival advantages – these personalised dialysis prescriptions are usually only available in the home setting.

Thrice weekly dialysis, the standard in hospital unit settings, must be considered as a minimum. The Department of Health will not support twice weekly dialysis because in most circumstances it is unsafe. However, in extraordinary clinical circumstances twice weekly haemodialysis may be acceptable. In those instances, in accordance with good medical practice, the rationale should be discussed with the patient (and often family) and the precise details should be carefully recorded.

Monday 23 March 2009

Bedtime reading: ACR day approaches fast

From April 2009 CKD 6 comes into effect in the Quality and Outcomes Framework for primary care. David Colin-Thome, Ian Barnes and myself have written to all General Practitioners and laboratory leads providing a detailed rationale for the systematic use of albimin creatinine ratio for measuring proteinuria.

One new indicator is added, for 6 points: CKD 6: The percentage of patients on the CKD register whose notes have a record of an albumin: creatinine ratio (or protein: creatinine ratio) value in the previous 15 months.

Proteinuria detection and quantitation using ACR, info for labs
Proteinuria detection and quantitation using ACR, info for GPs

The art of care planning

World Kidney Day 2009 was a fabulous occasion for me – and not because of the reception at the Palace of Westminster, not because my mum was proud to see me interviewed on BBC News, not even because I was able to witness the performance art “demolition dialysis’. They were all fun and seeing the increased public facility of kidney disease is certainly encouraging.

For me the high point of Thursday 12 March 2009 was the launch of the ‘Kidney Care Plans’, NHS Kidney Care’s first major achievement. Lead by clinicians, produced in partnership with the whole kidney community, aligned to the Government commitment that everyone with a long term condition will have the right care plan by 2010 and tailored for local ownership that they are the culmination of a tremendous amount of thought, work and experimentation.

These kidney care plans are not perfect, but they are good and they provide a platform that can be transformational. They are not a check-list. They are based on the real experience and views of patients and clinicians. The questions they contain are prompts for potential discussion points. Advanced kidney disease is not routine – every person’s clinical situation is unique, even people with the same underlying cause of kidney disease will have significant differences in their medical history. In manufacturing variability is a sin. It occurs when process control has failed. It represents poor quality. Quality in healthcare is not so simple – it is both a science and an art. We need vigorous process control in many aspects of kidney care – to eradicate delays, to put safety first and to monitor the level of kidney function – to name a few. Care planning cannot be handled in that way – care planning is all about the individual and individuals are infinitely variable. Care planning is about values it is not about standardisation. It is about building strong relationships between staff and patients. It is about trust. It is about empowering all staff to support the individual with kidney disease to set and achieve their own goal. It is about patient experience. It’s an art rather than a science.

So the care plans are a platform upon which we can address some of the challenges that care planning will hold – such as, getting enough time and space for staff to have the discussions with people who have kidney disease. You can use care planning to improve the understanding that people have of their condition and the limitations it will place upon them. Entering into a shared responsibility with patients and their families will challenge some aspects of our thinking about disease processes and the outcomes that we should be pursuing. Listening is sometimes difficult when talking! The care plans, the scientific platform – the process platform, if you like, are the easy bit, but I think the process of care planning itself is not new, we need to rediscover it and given the values of the people in kidney care, indeed the people in the whole NHS, I think care planning should come naturally. Have a go!!