This short report highlights a number of ways that patients can help drive the safety agenda. From helping to reach an accurate diagnosis to observing and checking care processes and shaping the design and improvement of services. It is worth a read and could be easily adapted for use in kidney care.
Read it on the website of the National Library for Health
Tuesday, 27 November 2007
Thursday, 22 November 2007
bedtime reading: The Building Note for Main Renal Units
This has been in a long gestation. The consultation period ended in June 2004! An important read for renal unit managers, lead nurses and clinical directors.
HBN 53 Vol 2 Main Dialysis Unit.
HBN 53 Vol 2 Main Dialysis Unit.
Tuesday, 20 November 2007
Q & A: funding for live donor transplantation
Published in Kidney Life in 2007
Q: How do you see living donation developing in the UK when funding for blood group incompatible live donor transplants and LDTX for highly sensitised patients, is so restricted? Surely if more patients could be transplanted prior to starting dialysis this would save money?
A: Thank you for raising such an important point. We need a change in culture – we shouldn’t be thinking pre-dialysis care, we should as you imply, redesign our system so that as many people as possible receive a transplant before they need to start dialysis. Yes, it would save money – more importantly it would save lives. For a significant number of people a period of time on dialysis, with all the disruption, anxiety and risk involved, would be avoided.
For the majority of people who receive a live donor kidney transplant the best timing would be some time in the 6 months before they would have needed dialysis. That is one of our National Service Framework markers of good practice. But pre-emptive transplantation, to avoid dialysis, is not yet the norm. Only 3% of people who start replacement therapy in the UK get a pre-emptive transplant! For many there is a long and unacceptable delay in transplant workup and transplant listing. We can and we will do better.
Indeed the live donor programme is going from strength to strength with significant year on year increases such that now, a third of all kidney transplants are from live related or unrelated donors. Each and every one of them is a hero and I take my hat off to them! Many are having a laparoscopic procedure to donate – when that’s possible it’s a much easier operation for the donor who can return to normal activities more quickly than following a traditional kidney removal and the scar is much smaller.
The “Saving Lives, Valuing Donors: A Transplant Framework for England” launched in 2003 has provided some of the much needed investment in transplantation – over £4M in this year for new initiatives to increase donation. As a result live kidney donation and non heart beating donations have increased but heart beating donor rates – the main source of donor organs, have remained steady at best. That is why the Organ Donation Task Force was established to learn from what is happening in the countries with the best donation rates, consider why we aren’t yet in that league and to make recommendations to the Ministers and Secretary of State this autumn on actions that need to be taken to optimise donor rates.
The recent changes to the law, from September 2006, have expanded the options for live donation when there is blood group incompatibility or recipients are highly sensitised. The new kinds of living kidney donation are paired and altruistic donations. Donors are often a close relative but can also be individuals who are not related but have an established emotional relationship with the recipient such as a partner or close friend. Sometimes a donor and a recipient may be incompatible with each other because of blood group or tissue type mismatch and in this case it may be possible for them to be paired with another donor and recipient in the same situation so that each recipient will benefit from a transplant that they would otherwise not have had (paired donation). Where more than 2 pairs are involved in the swap it is called “pooled” donation. Donors may also now offer a kidney to someone who is on the waiting list for a transplant but whom they have never met (non directed altruistic donation). The “paired donation” programme is now up and running – the first transplants have been performed and more are planned. Paired exchange means that whilst the patient receives a kidney from an unknown donor, the transplant is blood group and HLA compatible, the recipient needs no extra treatment, and is also likely to be better in the long term than transplanting across blood group or HLA compatibility.
In some cases however it is possible to “break the rules” of ABO incompatibility or transplant someone who is highly sensitised – the workup and preparation for these live donor transplants is more complex and the risks are higher but several units have established ABO incompatible and immuno-absorbtion programmes that make such transplants a possibility and the results in these centres are excellent. UK Transplant is in the process of establishing a national registry of these transplants so that outcomes and best practice can be shared nationally to the whole kidney community.
Most of the barriers to transplantation are not financial – being listed a year after starting dialysis is a system not a funding failure. However I am pleased that you raised the issue of funding because it has been a delaying factor in some instances and because the Department of Health has just issued guidance on this point.
“Who pays? Establishing the responsible commissioner” (Department of Health, 2007) makes it crystal clear who is responsible for funding, you will be pleased to learn that live donor transplantation is specifically mentioned. The Primary Care Trust of the recipient of the donation should be responsible for funding the procedure and the reimbursement of out of pocket donor expenses such as loss of earnings. Ministers have specifically asked to be advised of NHS bodies that are unable to reach local resolution.
Q: How do you see living donation developing in the UK when funding for blood group incompatible live donor transplants and LDTX for highly sensitised patients, is so restricted? Surely if more patients could be transplanted prior to starting dialysis this would save money?
A: Thank you for raising such an important point. We need a change in culture – we shouldn’t be thinking pre-dialysis care, we should as you imply, redesign our system so that as many people as possible receive a transplant before they need to start dialysis. Yes, it would save money – more importantly it would save lives. For a significant number of people a period of time on dialysis, with all the disruption, anxiety and risk involved, would be avoided.
For the majority of people who receive a live donor kidney transplant the best timing would be some time in the 6 months before they would have needed dialysis. That is one of our National Service Framework markers of good practice. But pre-emptive transplantation, to avoid dialysis, is not yet the norm. Only 3% of people who start replacement therapy in the UK get a pre-emptive transplant! For many there is a long and unacceptable delay in transplant workup and transplant listing. We can and we will do better.
Indeed the live donor programme is going from strength to strength with significant year on year increases such that now, a third of all kidney transplants are from live related or unrelated donors. Each and every one of them is a hero and I take my hat off to them! Many are having a laparoscopic procedure to donate – when that’s possible it’s a much easier operation for the donor who can return to normal activities more quickly than following a traditional kidney removal and the scar is much smaller.
The “Saving Lives, Valuing Donors: A Transplant Framework for England” launched in 2003 has provided some of the much needed investment in transplantation – over £4M in this year for new initiatives to increase donation. As a result live kidney donation and non heart beating donations have increased but heart beating donor rates – the main source of donor organs, have remained steady at best. That is why the Organ Donation Task Force was established to learn from what is happening in the countries with the best donation rates, consider why we aren’t yet in that league and to make recommendations to the Ministers and Secretary of State this autumn on actions that need to be taken to optimise donor rates.
The recent changes to the law, from September 2006, have expanded the options for live donation when there is blood group incompatibility or recipients are highly sensitised. The new kinds of living kidney donation are paired and altruistic donations. Donors are often a close relative but can also be individuals who are not related but have an established emotional relationship with the recipient such as a partner or close friend. Sometimes a donor and a recipient may be incompatible with each other because of blood group or tissue type mismatch and in this case it may be possible for them to be paired with another donor and recipient in the same situation so that each recipient will benefit from a transplant that they would otherwise not have had (paired donation). Where more than 2 pairs are involved in the swap it is called “pooled” donation. Donors may also now offer a kidney to someone who is on the waiting list for a transplant but whom they have never met (non directed altruistic donation). The “paired donation” programme is now up and running – the first transplants have been performed and more are planned. Paired exchange means that whilst the patient receives a kidney from an unknown donor, the transplant is blood group and HLA compatible, the recipient needs no extra treatment, and is also likely to be better in the long term than transplanting across blood group or HLA compatibility.
In some cases however it is possible to “break the rules” of ABO incompatibility or transplant someone who is highly sensitised – the workup and preparation for these live donor transplants is more complex and the risks are higher but several units have established ABO incompatible and immuno-absorbtion programmes that make such transplants a possibility and the results in these centres are excellent. UK Transplant is in the process of establishing a national registry of these transplants so that outcomes and best practice can be shared nationally to the whole kidney community.
Most of the barriers to transplantation are not financial – being listed a year after starting dialysis is a system not a funding failure. However I am pleased that you raised the issue of funding because it has been a delaying factor in some instances and because the Department of Health has just issued guidance on this point.
“Who pays? Establishing the responsible commissioner” (Department of Health, 2007) makes it crystal clear who is responsible for funding, you will be pleased to learn that live donor transplantation is specifically mentioned. The Primary Care Trust of the recipient of the donation should be responsible for funding the procedure and the reimbursement of out of pocket donor expenses such as loss of earnings. Ministers have specifically asked to be advised of NHS bodies that are unable to reach local resolution.
Kidney care pathways
Eighteen week pathways are being developed with the aim of transforming service delivery. The start, stop and pause rules are important but not the biggest issue. A good test of the rules is do they make sense to the man on the proverbial Clapham omnibus? Let me give you an example – someone with normal excretory kidney function but with proteinuria and a protein creatinine ratio of 110 g/mol and the doctor is recommended to have a kidney biopsy in line with the UK CKD guidelines to find out the cause of proteinuria. Well, the clinicians reading this and patients who have been there, know the likelihood is that the biopsy might give prognostically useful information but the therapeutic intervention of blocking the rennin angiotensin system with an ACE inhibitor or ARB is unlikely to change on receipt of the biopsy result. Yes, treatment has started when the ACE inhibitor is prescribed but no, you don’t pause the clock – the person awaiting biopsy would almost certainly take the view that, until they have been told the result of the histological examination, and had the implications explained, they are still waiting to get this problem sorted out. So first rule - plain English and second rule, common sense when it comes to stops and starts.
We had our pathway initiation meeting with Pip Robinson’s 18 week team on 15 November. John Scoble (Consultant Renal Physician, Guys Hospital) and Mike Nicholson (Consultant Transplant Surgeon, Leicester General Hospital) are leading on the Live Donor Pathway and Lawrence Goldberg (Clinical Director of Renal Medicine, Brighton) and Kathryn Griffiths (GP with specialist interest in vascular disease, University Health Centre, York) are leading on the Kidney Disease Pathways. The latter are planned to cover all specialist kidney referrals and will be developed in 2 parallel sections - early CKD and advanced CKD. Lisa Hollins (Service Manager, University College London Hospital) will be managing our project and keeping us on track. Lisa has been working on 18 week pathways for some time with Steve Laitner (Consultant in Public Health Medicine and GP, St Albans & Harpenden PCT). They have led on the introduction of the Quality of Life domain into the pathway work.
The timelines are challenging – draft to be ready to share with patients, the professional societies and the colleges by January and a consensus meeting to sign off February with implementation from March 2008!. But it’s not about reinventing the wheel – lots of work on chronic kidney disease has been done over the last 3 or 4 years and this will form the basis of the project.
The power of the pathways isn’t so much that they produce a national template for Trusts and units to adopt although that in itself is helpful, but rather that they provide structured clarity for primary care, clear guidance for exit from secondary care and promote a means by which to judge some aspects of quality. They are commissioning pathways not detailed clinical algorithms. I am delighted that we have Rob Lusardi (Assistant Director, West Midland Specialised Commissioning Team) on the group because of his experience as a commissioner with the West Midlands Renal Network.
For many people with kidney disease the pathway in secondary care will end with an information prescription with what the condition means, what the person with kidney disease can do to avoid the complications of chronic kidney disease and how this long term condition should be managed. A care plan by any other description and a core aim of Standard 1 of the Renal NSF that can be audited.
The real power of the pathways resides in the second phase. Mapping technology enablers, workforce requirements, education and training needs to the pathway; identifying the barriers and tackling them – be that the volume of day case vascular access, timely ultrasound service, electronic handshakes of care planning between primary and secondary or the need for translation services. The pathways are also likely to be linked to the map of medicine and the NHS Choices site but more about those on another day.
We made great progress on this until the fire alarm but we all got out safe and sound so I am expecting great things from Kathryn and Lawrence, Mike and John over the next 2 months.
As ever, I would welcome your comments and a spare pair of hands or brain is always a bonus. Come and get stuck in.
We had our pathway initiation meeting with Pip Robinson’s 18 week team on 15 November. John Scoble (Consultant Renal Physician, Guys Hospital) and Mike Nicholson (Consultant Transplant Surgeon, Leicester General Hospital) are leading on the Live Donor Pathway and Lawrence Goldberg (Clinical Director of Renal Medicine, Brighton) and Kathryn Griffiths (GP with specialist interest in vascular disease, University Health Centre, York) are leading on the Kidney Disease Pathways. The latter are planned to cover all specialist kidney referrals and will be developed in 2 parallel sections - early CKD and advanced CKD. Lisa Hollins (Service Manager, University College London Hospital) will be managing our project and keeping us on track. Lisa has been working on 18 week pathways for some time with Steve Laitner (Consultant in Public Health Medicine and GP, St Albans & Harpenden PCT). They have led on the introduction of the Quality of Life domain into the pathway work.
The timelines are challenging – draft to be ready to share with patients, the professional societies and the colleges by January and a consensus meeting to sign off February with implementation from March 2008!. But it’s not about reinventing the wheel – lots of work on chronic kidney disease has been done over the last 3 or 4 years and this will form the basis of the project.
The power of the pathways isn’t so much that they produce a national template for Trusts and units to adopt although that in itself is helpful, but rather that they provide structured clarity for primary care, clear guidance for exit from secondary care and promote a means by which to judge some aspects of quality. They are commissioning pathways not detailed clinical algorithms. I am delighted that we have Rob Lusardi (Assistant Director, West Midland Specialised Commissioning Team) on the group because of his experience as a commissioner with the West Midlands Renal Network.
For many people with kidney disease the pathway in secondary care will end with an information prescription with what the condition means, what the person with kidney disease can do to avoid the complications of chronic kidney disease and how this long term condition should be managed. A care plan by any other description and a core aim of Standard 1 of the Renal NSF that can be audited.
The real power of the pathways resides in the second phase. Mapping technology enablers, workforce requirements, education and training needs to the pathway; identifying the barriers and tackling them – be that the volume of day case vascular access, timely ultrasound service, electronic handshakes of care planning between primary and secondary or the need for translation services. The pathways are also likely to be linked to the map of medicine and the NHS Choices site but more about those on another day.
We made great progress on this until the fire alarm but we all got out safe and sound so I am expecting great things from Kathryn and Lawrence, Mike and John over the next 2 months.
As ever, I would welcome your comments and a spare pair of hands or brain is always a bonus. Come and get stuck in.
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