APPKG Donal O'Donoghue's address
At a recent meeting of the All Party Parliamentary Kidney Group Dr Donal O’Donoghue National Clinical Director for Kidney Care and Consultant Renal Physician gave a presentation. A summary of the meeting is given below:
Dr O’Donoghue stated it was a pleasure to address the meeting. He would explain the issues for kidney patients and acknowledged the challenges the current financial situation was presenting. He knew many people with kidney diseases and accepted many sitting in the audience knew more about it than himself.
Dr O’Donoghue continued by showing a multi-slide presentation which provided both graphical and written information about the stages of kidney disease. The presentation is now available on NKF website: www.kidney.org.uk/news/odonoghue10.html.
Primary Care had now registered 2 million people with CKD. The prevalence is set to continue throughout England year upon year. More cases are being detected. Historically, only dialysis and transplantation had been known about. It is a disease which is predominantly found in adults, but young people do suffer. Unfortunately, there are not many groups for young people and hospitals are not designed for young people.
People with kidney disease suffer a lot of vascular disease also. Conservative kidney management was acknowledged in the UK. It is an extremely difficult but important aspect of long term illnesses and the kidney team are leading the way in providing support without dialysis. Kidney failure is diagnosed when the kidney has just 10% functionality.
Ray Mackey NKF asked when the term Acute Kidney Injury (AKI) was introduced. It appears to be in conflict with kidney disease and reflects an injury and not a disease.
Dr Donal O’Donoghue stated radiologists had made a similar comment. It is perhaps not the greatest terminology, but it is the term being used globally. Acute kidney failure (AKF) means the kidney shuts down for a while. The trend is to move people away from AKF to at risk of developing an injury of the kidney.
Detection of CKD is now being identified and reported by every laboratory in the country. Up to five years ago this was not being done. The eGFR test picks up early kidney disease which can then be managed in the community. Achieving good blood pressure control is vital.
Kidney disease is a silent disease but a killer. If your eGFR result was 50 you would not know you had a kidney problem, so how can medics pick people up to monitor vascular risk? This is a serious public health problem.
In April 06 very few people had been identified. By introducing the eGFR test into primary care under the Quality and Outcomes Framework (QOF) this was transformed.
There are many risks arriving on dialysis as a crashlander. Poor care, and very expensive treatment.
Robert Buckland MP asked if it was preferred for patients to approach dialysis gradually and if more regular dialysis was a better treatment than the three times per week process.
Dr Donal O’Donoghue stated if we can provide more gentle shorter regular dialysis this is often much better for the patient rather than giving three times weekly dialysis. It is not the dialysis; more the way it is administered.
Marion Higgins NKF stated she dialyses every night for six hours. Her toxicity levels are almost as good as having received a cadaveric transplant, but other patients respond better to different ways of dialysis.
Dr Donal O’Donoghue confirmed daily dialysis can provide an excellent quality of life compared to conventional 3 × week dialysis for the patients that choose this option.
In reply to a question raised if most people received three times per week dialysis, Dr Donal O’Donoghue stated the system should provide everyone with choice. But most patients almost have to demand rather than be offered the range of options. Many of the reasons are cultural. The historical dependence on hospital and satellite based treatment needs to be overcome by interacting with individuals. All have low percentage kidney function but all want different things. One 85 year old may be very different to the next. The system we have now if they are not offered a choice then we need to know. Patient stories are invaluable. They can talk to commissioners, policy makers in a way professionals could never do. At a recent meeting in Manchester a number of patients gave their stories.
Dialysis at home is cheaper than hospital. But you do need a team of people dedicated to provide adult learning methodologies. To maintain the service at home, and maintain the individual autonomy at home, it is a very different business to provide home dialysis than to provide hospital services. We are working on it by going into the community and people are now asking questions. We have started the journey but there is a long way to go.
Beverley Matthews Director Kidney Care stated there are barriers around home dialysis. It is around the fundamental issues such as support for the carer. It has to be done in a planned way.
Timothy Statham NKF asked if it was fair to say that in 2002 NICE stated the current level of home dialysis was 2% and this should be raised to 15% and is it still fair to say that the level remains at 2%.
Dr Donal O’Donoghue stated home dialysis had risen in absolute numbers but it was fair to say it remained at 2%. NICE said up to 15%, but Dr Donal O’Donoghue said his aim was for 100% of people to be given real choice and not to set artificial targets. Where people are educated and offered the choice home dialysis rates will move up and may exceed 15%.
Timothy Statham NKF stated it was important politicians understood the move from 2% to 15% afforded huge cost savings to the NHS. It is vital this mind set is changed.
Dr Donal O’Donoghue – It is more than just about the dialysis. There is the travel element. Four million miles are travelled every year to dialysis units. It saves money.
Frank Howarth NKF stated he had started dialysis at hospital and moved to home dialysis and then received a transplant 20 years ago. There is no comparison from the patient point of view. You are free to do what you want to do instead of sitting waiting a couple of hours for a machine, waiting for transport. It was an excellent service in hospital but that cannot compare to home dialysis. Years ago the cost comparisons made proved home dialysis to be cheaper. All the costs really show significant financial improvement. But the patient has to come first.
Marion Higgins NKF stated a price could not be put on quality of life. She continued by commenting that timely vascular access has to be key. People who crash land miss the whole patient education process and their choice of modality is stripped. These patients need to be revisited and informed of their choices. Counselling should also be included. There is a lot of work needed in that area.
Dr Donal O’Donoghue acknowledged this was an area needing attention. The Imperial College Hospital (West London) had done a lot of work making sure people who start dialysis in an unplanned way where getting the same education, but it is not happening over the whole of the country.
Duncan Hames MP thanked Dr Donal O’Donoghue for an excellent presentation and stated he felt the APPKG meeting had been extremely educational. He asked Robert Buckland to close the meeting on his behalf.
Robert Buckland MP asked if anyone had any further questions:
Denny Abbott Observer stated 2011 would see the introduction of Payment by Results (PBR). Currently, home haemodialysis (HHD) is cheaper. Will this make a difference to PCT’s allowing patients to dialyse at home?
Dr Donal O’Donoghue stated a tariff for HHD would not be set as it would probably be wrong. The message would be HHD is a good option, is overall better value for money than hospital based dialysis and all services need to offer home HD and peritoneal dialysis. In some areas units may choose to cooperate to provide HHD. Commissioners, providers and patients, need to work together, to ensure those who want HHD can benefit from it.
Fistula access will be in incentivised. Dialysis via a fistula will attract a higher tariff. Dialysis via a line is associated with a 800× higher rate of MRSA blood stream infection than the non dialysis population. What is planned is good units providing good preparation for fistula creation before dialysis, good change of pre-emptive transplantation and increasing HHD. It is not about profit and loss but commissioning quality without destabilising the situation.
Frank Howarth NKF stated during his dialysis time, some patients had been put onto dialysis when vascular access had only been done six weeks previously. Consequently, the fistula blows. He had had his fistula 12 months prior to dialysis and had not had any problems. Could this be achieved?
Dr Donal O’Donoghue stated the recommended timing for fistula creation is six months before dialysis is likely to be needed and this should be encouraged.