The Department of Health launched its vision for World Class Commissioning at a major event on the 3 December 2007 in London.
By summer of next year Primary Care Trusts will be expected to be putting together plans setting out how they will achieve both the vision and meet the competencies; plans will be assessed against more specific criteria to be launched next year.
Monday, 24 December 2007
Tuesday, 18 December 2007
A Christmas message for the kidney care community
Seasons greetings to everyone reading this message. I hope you are looking forward to the festive season and that you get a break and rest over the holiday period. It’s a time to reflect and recharge for the year ahead.
I am sure we will all have many opportunities to improve kidney care in 2008 and you will have my support to help make your services world class for local people with kidney disease.
I have listened a lot in the last 12 months – I appreciate staff are under a lot of pressure, for many patients I understand that the experience is the outcome and I realise that we have a long way to go before we can put hand on heart and say our kidney care service is truly world class. I have no doubt we can get there – that’s why I took this job.
It’s been a roller coaster of a year for me. Standing down at President of the Renal Association to take on the National Clinical Director role was a very difficult decision. The support and advice I received from colleagues, my family, patients and carers had been marvellous. I am going to enjoy the break and will be back working for better kidney care and blogging with renewed enthusiasm on 2 January.
Best wishes to all.
I am sure we will all have many opportunities to improve kidney care in 2008 and you will have my support to help make your services world class for local people with kidney disease.
I have listened a lot in the last 12 months – I appreciate staff are under a lot of pressure, for many patients I understand that the experience is the outcome and I realise that we have a long way to go before we can put hand on heart and say our kidney care service is truly world class. I have no doubt we can get there – that’s why I took this job.
It’s been a roller coaster of a year for me. Standing down at President of the Renal Association to take on the National Clinical Director role was a very difficult decision. The support and advice I received from colleagues, my family, patients and carers had been marvellous. I am going to enjoy the break and will be back working for better kidney care and blogging with renewed enthusiasm on 2 January.
Best wishes to all.
Review and update of the specialised renal services definition
Following the Carter Review of commissioning arrangements for specialised services May 2006 it was agreed that the specialist services definitions set would be updated. We are currently using the second edition produced in 2002 which covers 35 definitions including renal services. So an update to bring the definitions in line with the Renal NSF (the KDOQI nomenclature and the “eGFR” era) makes eminent sense.
The purpose of updating the definition is to produce a set of classifications (ICD and OPCS codes plus text where codes are lacking/insufficient) to enable providers and commissioners to identify and cost specialist service activity. It is important to recognise that the definitions are not service specifications or descriptions of best/evidence based practice or service models. Normally, specialist services are those services where the catchment planning population is greater than 1 million. In other words, these services would not be provided in every district general hospital.
The Renal NSF recommends that preparation for replacement therapy, dialysis and transplant services are best commissioned through a “network” approach in order to ensure equity of access and cohesive planning responsive to the needs of the whole community. The natural population for such effective planning remains in excess of 1 million and may more typically be covered by a Strategic Health Authority (SHA). The Specialist Commissioning Groups (SCGs) are co-terminus with the SHAs and the need to plan for increased dialysis capacity was flagged to the SCGs in the recently published Operating Framework.
Clearly the pathway for patients with CKD involves elements of care which are best delivered at local level and there needs to be clear lines of accountability to ensure that early kidney disease management is provided in line with the principles laid out in Part 2 of the Renal NSF. Acute kidney injury and the “conservative management pathway” also need to be clearly defined for the same reasons.
The unanimous view of the Renal Association and of the National Kidney Federation is that renal services should remain included within the specialist services national definition set. Clearly the update of the specialised commissioning definition links with the current PbR project and with the coding initiatives including the renal SNOMED exercise and the review of the HRGs. They are all important pieces of the jigsaw that, when in place, will enable us to translate between clinical activity and financial returns.
We will be working to update the specialised definition for renal services over the next couple of months. I have asked Kevin Harris (Clinical Vice President of the Renal Association) and Bob Dunn (Patient Advocacy Officer of the National Kidney Federation) to help with this task. I would also welcome the views and comments of individuals – if you would like to contribute please contact me.
The purpose of updating the definition is to produce a set of classifications (ICD and OPCS codes plus text where codes are lacking/insufficient) to enable providers and commissioners to identify and cost specialist service activity. It is important to recognise that the definitions are not service specifications or descriptions of best/evidence based practice or service models. Normally, specialist services are those services where the catchment planning population is greater than 1 million. In other words, these services would not be provided in every district general hospital.
The Renal NSF recommends that preparation for replacement therapy, dialysis and transplant services are best commissioned through a “network” approach in order to ensure equity of access and cohesive planning responsive to the needs of the whole community. The natural population for such effective planning remains in excess of 1 million and may more typically be covered by a Strategic Health Authority (SHA). The Specialist Commissioning Groups (SCGs) are co-terminus with the SHAs and the need to plan for increased dialysis capacity was flagged to the SCGs in the recently published Operating Framework.
Clearly the pathway for patients with CKD involves elements of care which are best delivered at local level and there needs to be clear lines of accountability to ensure that early kidney disease management is provided in line with the principles laid out in Part 2 of the Renal NSF. Acute kidney injury and the “conservative management pathway” also need to be clearly defined for the same reasons.
The unanimous view of the Renal Association and of the National Kidney Federation is that renal services should remain included within the specialist services national definition set. Clearly the update of the specialised commissioning definition links with the current PbR project and with the coding initiatives including the renal SNOMED exercise and the review of the HRGs. They are all important pieces of the jigsaw that, when in place, will enable us to translate between clinical activity and financial returns.
We will be working to update the specialised definition for renal services over the next couple of months. I have asked Kevin Harris (Clinical Vice President of the Renal Association) and Bob Dunn (Patient Advocacy Officer of the National Kidney Federation) to help with this task. I would also welcome the views and comments of individuals – if you would like to contribute please contact me.
Monday, 17 December 2007
Dialysis capacity planning gets a mention in the operating Framework
The Operating Framework sets out the specific business and financial arrangements for the NHS in 2008/09. Coming at the beginning of the next 3 year planning cycle following the recent comprehensive spending review it identifies priorities and ambitions in detail. Many of its key aims are central to delivering world class kidney care including:
- Reducing healthcare associated infections
- Keeping people well
- Delivering the 18 week standard
- Reducing health inequalities
- Improving patient experience
- Improving staff satisfaction and engagement
- Co-ordinating end of life care.
Specialised services commissioning is highlighted as one of the key enabling strategies.
The 10 Specialised Commissioning Groups (SCGs) were created as a result of the Carter Review and are charged with driving up the quality of specialised services.
“In commissioning for world class health services, SCGs should pay particular attention to areas where significant increase in demand is likely to lead to pressure on services. For example, demand for renal replacement therapy (dialysis and transplantation) is projected to rise by around 5% per year until at least 2030. SCGs will wish to consider options for expanding the provision of satellite dialysis centres and offering more people the option of home dialysis, as well as expanding acute dialysis units”.
The Operating Framework sets out the vision that will shape our future. It's short and readable.
Clinicians and finance directors speaking the same language?
Paul Jennings (CEO of Walsall PCT) led on the response to the Payment by Results consultation exercise for the Renal Advisory Group that established our PbR project. If Paul had been at our recent meeting, I feel sure he would have adopted the graceful manner of Henry Morgenthau (1891-1967), the US Secretary of the Treasury who presided over the 1944 Bretton Woods Agreement.
Perhaps a grey day at Quarry House in Leeds does not compare with New England in the summer but the first meeting of the Payment by Results Group was remarkable. The finance directors and clinical directors, representing 16 Trusts across the country that provide over 30% of the specialised renal services in England, certainly had not read the recent Audit Commission’s “A prescription for partnership” (13 December 2007) that criticised clinicians and finance colleagues for not communicating. Or if they had, they were doing something about it!! I have never seen such a sight before – clinical and finance directors working together, clearly respecting each others opinions, different views of the world and experience to grapple with the complex task of developing a tariff for dialysis that will work to drive improvements in quality of kidney care. To be fair, the Audit Commission report is of course correct and we have a long way to go before the finance director asks for the quality report ahead of the income and expenditure spreadsheets but our PbR meeting was a step in that direction.
Credit goes to Bev Matthews (West Midlands’ Renal Network Manager), Chris Newton (Divisional Finance Manager, University Hospital Birmingham) and John Bradley (Consultant Renal Physician, Addenbrookes Hospital Cambridge) who have worked so hard with the DH PbR team to get us all to the same start line – well done all!
Concerns of course were expressed. We know where we want to get to – an effective translational process between the financial and clinical worlds - but we must acknowledge and manage the risks in that journey.
Donald Richardson (Consultant Renal Physician in York) was I think you would say sceptical about that whole exercise and pointed me in the direction of “competition in a publicly funded healthcare system” by Steffie Woolhandler and David Himmelstein in the BMJ 1 December whose principal thesis was that the appropriate response to the US experience with market based models for health services is quarantine not replication. Donald raised important caveats, but payment by results antecedence is of course in Australia not the USA.
One of the concerns I share is that “everything that counts can’t be counted” . I am pleased that specialised commissioning leads are part of our PbR team so they can be party to discussions and so they understand that getting robust dialysis costs are only part of the story. The year before dialysis, or as I am increasingly calling it “the year before pre-emptive transplantation if possible” and support for conservative and palliative care are essential components of a world class kidney care service. I think it is too soon to fix a tariff for these aspects of care – the definitions, data capture, models of care and performance markers are not yet in place. To introduce metrics in an effort to try to measure quality in these circumstances risks establishing arbitrary and unrealistic boundaries – judgement and commonsense could be replaced by blind reliance on numbers . The NSF standards and quality requirements in these areas of care highlight their importance and there was complete agreement in the group that we need to flag these elements of care to commissioners and providers in parallel with the PbR work on dialysis.
Roger Greenwood (Clinical Director at the Lister Hospital Stevenage) made another important observation – the risk that getting tariff right now might fossilise the service and prevent innovation in the future. Several people commented that innovation in dialysis has usually been driven by colleagues in industry. It is likely that community care will be the place for most innovation – daily haemodialysis, assisted peritoneal dialysis and the re-emergence of overnight haemodialysis spring to mind.
Having identified some of the risks, Bev Matthews has drawn up a risk management strategy. Bev is a great project manager. So we are up and running. The Project Group will meet face to face again in February to look at our various costs and their components so that we will be able to inform the reference cost submissions for 2007/08 that will be required in June 2008.
It is perhaps fanciful to liken the exercise to the Bretton Woods agreement that established the international monetary fund and the system of convertible currencies, fixed exchange rates and free trade but it was a most extraordinary meeting.
Paul Jennings couldn’t be in Leeds for the launch meeting because he was speaking about commissioning at the NHS World Class Commissioning Conference hosted by Mark Britnell (Director General of Commissioning & System Management at DH). That tells me 3 things – Paul is a well connected and respected guy, we have the right person leading our process and you can feed into things virtually.
Perhaps a grey day at Quarry House in Leeds does not compare with New England in the summer but the first meeting of the Payment by Results Group was remarkable. The finance directors and clinical directors, representing 16 Trusts across the country that provide over 30% of the specialised renal services in England, certainly had not read the recent Audit Commission’s “A prescription for partnership” (13 December 2007) that criticised clinicians and finance colleagues for not communicating. Or if they had, they were doing something about it!! I have never seen such a sight before – clinical and finance directors working together, clearly respecting each others opinions, different views of the world and experience to grapple with the complex task of developing a tariff for dialysis that will work to drive improvements in quality of kidney care. To be fair, the Audit Commission report is of course correct and we have a long way to go before the finance director asks for the quality report ahead of the income and expenditure spreadsheets but our PbR meeting was a step in that direction.
Credit goes to Bev Matthews (West Midlands’ Renal Network Manager), Chris Newton (Divisional Finance Manager, University Hospital Birmingham) and John Bradley (Consultant Renal Physician, Addenbrookes Hospital Cambridge) who have worked so hard with the DH PbR team to get us all to the same start line – well done all!
Concerns of course were expressed. We know where we want to get to – an effective translational process between the financial and clinical worlds - but we must acknowledge and manage the risks in that journey.
Donald Richardson (Consultant Renal Physician in York) was I think you would say sceptical about that whole exercise and pointed me in the direction of “competition in a publicly funded healthcare system” by Steffie Woolhandler and David Himmelstein in the BMJ 1 December whose principal thesis was that the appropriate response to the US experience with market based models for health services is quarantine not replication. Donald raised important caveats, but payment by results antecedence is of course in Australia not the USA.
One of the concerns I share is that “everything that counts can’t be counted” . I am pleased that specialised commissioning leads are part of our PbR team so they can be party to discussions and so they understand that getting robust dialysis costs are only part of the story. The year before dialysis, or as I am increasingly calling it “the year before pre-emptive transplantation if possible” and support for conservative and palliative care are essential components of a world class kidney care service. I think it is too soon to fix a tariff for these aspects of care – the definitions, data capture, models of care and performance markers are not yet in place. To introduce metrics in an effort to try to measure quality in these circumstances risks establishing arbitrary and unrealistic boundaries – judgement and commonsense could be replaced by blind reliance on numbers . The NSF standards and quality requirements in these areas of care highlight their importance and there was complete agreement in the group that we need to flag these elements of care to commissioners and providers in parallel with the PbR work on dialysis.
Roger Greenwood (Clinical Director at the Lister Hospital Stevenage) made another important observation – the risk that getting tariff right now might fossilise the service and prevent innovation in the future. Several people commented that innovation in dialysis has usually been driven by colleagues in industry. It is likely that community care will be the place for most innovation – daily haemodialysis, assisted peritoneal dialysis and the re-emergence of overnight haemodialysis spring to mind.
Having identified some of the risks, Bev Matthews has drawn up a risk management strategy. Bev is a great project manager. So we are up and running. The Project Group will meet face to face again in February to look at our various costs and their components so that we will be able to inform the reference cost submissions for 2007/08 that will be required in June 2008.
It is perhaps fanciful to liken the exercise to the Bretton Woods agreement that established the international monetary fund and the system of convertible currencies, fixed exchange rates and free trade but it was a most extraordinary meeting.
Paul Jennings couldn’t be in Leeds for the launch meeting because he was speaking about commissioning at the NHS World Class Commissioning Conference hosted by Mark Britnell (Director General of Commissioning & System Management at DH). That tells me 3 things – Paul is a well connected and respected guy, we have the right person leading our process and you can feed into things virtually.
bedtime reading: A prescription for partnership (Audit Commission) 3 December 2007
Audit Commission, 3 December 2007 "A prescription for partnership".
This report is aimed at clinicians, managers and finance professionals currently working within the NHS and attempting to combine high quality clinical care with sound financial management. It is also aimed at NHS trust and PCT boards which set the tone for their organisations. Two short briefing papers will also be published; one aimed at clinicians and one aimed at finance staff.
This report is aimed at clinicians, managers and finance professionals currently working within the NHS and attempting to combine high quality clinical care with sound financial management. It is also aimed at NHS trust and PCT boards which set the tone for their organisations. Two short briefing papers will also be published; one aimed at clinicians and one aimed at finance staff.
Wednesday, 12 December 2007
Q & A: 18 Week Pathways
Q: Donal, I just can't get to grips with 18 week pathways being sensible in the vast majority of our patients, and your example only confuses things further.
The CKD guidelines suggest PCR > 100 mg/mmol warrants referral, but who says it needs a biopsy (and it would be the patient not the doctor needing it, by the way!)?
Almost every CKD patient I see has multiple separate but linked problems with overlapping treatments, some of which they are on at time of referral. It is impossible to have a meaningful 18 week to treatment target for, for example, a new patient with polycystic kidneys, or an elderly hypertensive vasculopath with imperfect BP control, proteinuria, a creatinine of 275 already on an ACEi .
As a Tsar you will be well aware of the dangers of Potemkin villages and this target looks like one of them to me.
Dr John Main, Consultant Nephrologist, James Cook University Hospital, Middlesbrough
A: They will be the first, or one of the first long term conditions 18 week pathways, one challenge is how to use these acute care constructs as levers for better quality for CKD management , another is how to modify them to fit with the underlying aims and principals of the NSF so they work better.
Some secondary gains of being at the 18 week pathway party are the system opportunities they offer eg if delay for USS is an issue an 18 week priority escalates that problem . Another is the education it hopefully will help drive re appropriate referrals into specialist services.
They are commissioning level pathways rather than detailed clinical protocols but they map across to make sense /drive quality.
Thanks John and I will, as they say, feed those challenges in.
John: Crikey, you're even speaking in Russian now!
Donal: Ya znai-oo
The CKD guidelines suggest PCR > 100 mg/mmol warrants referral, but who says it needs a biopsy (and it would be the patient not the doctor needing it, by the way!)?
Almost every CKD patient I see has multiple separate but linked problems with overlapping treatments, some of which they are on at time of referral. It is impossible to have a meaningful 18 week to treatment target for, for example, a new patient with polycystic kidneys, or an elderly hypertensive vasculopath with imperfect BP control, proteinuria, a creatinine of 275 already on an ACEi .
As a Tsar you will be well aware of the dangers of Potemkin villages and this target looks like one of them to me.
Dr John Main, Consultant Nephrologist, James Cook University Hospital, Middlesbrough
A: They will be the first, or one of the first long term conditions 18 week pathways, one challenge is how to use these acute care constructs as levers for better quality for CKD management , another is how to modify them to fit with the underlying aims and principals of the NSF so they work better.
Some secondary gains of being at the 18 week pathway party are the system opportunities they offer eg if delay for USS is an issue an 18 week priority escalates that problem . Another is the education it hopefully will help drive re appropriate referrals into specialist services.
They are commissioning level pathways rather than detailed clinical protocols but they map across to make sense /drive quality.
Thanks John and I will, as they say, feed those challenges in.
John: Crikey, you're even speaking in Russian now!
Donal: Ya znai-oo
Thursday, 6 December 2007
bedtime reading: New deal for carers
Points highlighted are:
physical and emotional pressure; respite care; improved access; detays; postcode lottery; inconsistencies; bureaucracy; financially worse off; opportunity to be able to go to work; recognition of the role that they play.
The report "New Deal for Carers" identifies the factors that would make the biggest difference to carers lives both in their role as carers and in their lives outside caring. It should provide the basis for updating the 1999 Prime Minister's Strategy. It uses an interesting technique of an online ideas tree as well as more traditional stakeholder engagement.
physical and emotional pressure; respite care; improved access; detays; postcode lottery; inconsistencies; bureaucracy; financially worse off; opportunity to be able to go to work; recognition of the role that they play.
The report "New Deal for Carers" identifies the factors that would make the biggest difference to carers lives both in their role as carers and in their lives outside caring. It should provide the basis for updating the 1999 Prime Minister's Strategy. It uses an interesting technique of an online ideas tree as well as more traditional stakeholder engagement.
Tuesday, 27 November 2007
bedtime reading: Patient involvement in patient safety - the patient as part of the safety solution: how can patients be involved?
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
Read it on the website of the National Library for Health
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.
Monday, 19 November 2007
PL CNO (2007)7: National confidential study of deaths following meticillin-resistant staphylococcus aureus (MRSA) infection
This report describes a small sample enquiry into MRSA related deaths. In the main phase of the study, 15 of the 38 deaths examined were in with kidney failure. Four of the 7 case studies had kidney failure. A number of key points were identified including the association with significant co-morbidities, use of indwelling invasive devices and concerns documentation, you will have seen the letter from the CMO regarding inclusion of healthcare associated infection information on death certificates and organisational issues including difficulties implementing isolation policies and large variance in the auditing of infection control practices between Trusts.
PL CNO (2007)7: National confidential study of deaths following meticillin-resistant staphylococcus aureus (MRSA) infection
PL CNO (2007)7: National confidential study of deaths following meticillin-resistant staphylococcus aureus (MRSA) infection
Renal Haemodialysis Patient - quality of care checklist launched
The Department of Health Renal Advisory Group held a workshop on Quality and Patient Experience on 27 February 2007. The purpose of the workshop was to discuss how to measure experience and ensure that the voice of patients and their own carers is incorporated into care planning, commissioning and service evaluation. Participants at the event contributed to an empowering checklist that it is hoped will enable patients to review to ask key questions to improve the quality of the care they receive.Tim Statham, (Chief Executive of the National Kidney Federation) said “the NKF is aware that many Kidney Patient Associations spend a great deal of time trying to ensure that their Kidney Patient members are receiving the best possible care and have access to all available treatment options – only then will quality of life be maximised. Now the Department of Health, National Kidney Federation, and British Renal Society have joined together to produce a check list which will make this task easier. Providing these are now available all the time, in all the renal units, then patients will pick one up, start to fill it in, and realise for themselves how good or bad the treatment they are receiving is measuring up to what is possible. These are not surveys to be handed in. These are to make patients (and staff) question their everyday renal care”
The information has been posted on the NKF website and can be accessed by this direct link.
The information has been posted on the NKF website and can be accessed by this direct link.
Friday, 16 November 2007
Patient power drives better information for those living with CKD
CKD (chronic kidney disease) is common, harmful and treatable; however, it is under-recognised and consequently, leads to late referrals and lost opportunities to improve the condition early on. Whilst dialysis and transplantation are important in the treatment of CKD, other elements, such as lifestyle changes, are also vital to the management of the disease, so its important that we get practical information out to patients to enable them to make the best choices for them about their lifestyle and treatment plans, which in turn gives people with CKD the ability to take control and manage their condition appropriately.
I have recently been involved in an initiative, led by Kidney Research UK and the British Renal Society, and supported by The Big Lottery Fund, Baxter Healthcare UK, Wyeth UK, Astellas Pharma Inc and Genzyme UK. to create 2 DVD modules which provide exactly this information and advice.
‘Living with Kidney disease’ is a unique health awareness DVD project that aims to support anyone who has been told by their doctor that they have some level of kidney damage. Participants in the production of the DVD included BRS, Kidney Research UK, the Renal Association, the British Transplantation Society and the National Kidney Federation. Importantly, the content of the DVD has been driven by patients who themselves are suffering from CKD and who can provide a first hand view of their experiences.
The first module in this series is for those individuals who have been newly diagnosed with chronic kidney disease (CKD). This programme, presented by Dr Chris Steele from ITV’s This Morning, outlines what the kidneys do and the background to CKD. Most importantly, it covers what can be done in terms of both diet and lifestyle changes to prevent further damage to the kidneys and to reduce the associated risks of stroke and heart attack.
This module was launched on World Kidney Day earlier this year which, as well as aiming to raise renal care further up the political agenda, also reached out to communities in a bid to highlight the disease to specific high-risk groups including South Asians, Black African Caribbeans, people with diabetes, people with hypertension, obese individuals, smokers, and those with a history of vascular or kidney disease.
The second DVD, presented by Fiona Loud (Chair of the Kidney Alliance and someone with kidney disease) offers further practical advice and is aimed particularly at those individuals with more advanced kidney disease, or those who are just about to start dialysis. This DVD, which was recently launched at the National Kidney Federation Conference, discusses topics such as treatment choice - something which has to fit both the patient’s medical needs and lifestyle, transplantation options and practicalities such as employment and financial issues.
The advent of widespread eGFR reporting means that in the next couple of years large numbers of people will learn for the first time that they have CKD. This DVD will be a valuable resource to help patients (and clinicians advising patients) through this difficult period. The focus of the DVD is the lengthening and improving the quality of life of people with CKD; it covers diet and lifestyle advice, as well as accurate, honest and encouraging information on monitoring disease and health.
These DVDs are unique in that the material contained in them has been written by patients and is presented in a simple and positive way. Additionally, there are options to view the DVDs with subtitles in English and audio in English, Bengali, Gujarati, Urdu and Punjabi.
Have a look here to see what it looks like. Individual copies of the DVDs can be ordered on line at www.kidneyresearchuk.org/dvdproject. For bulk orders contact Kidney Research UK.
This project was supported by Baxter Healthcare UK, Wyeth UK, Astellas Pharma Inc., Genzyme UK and a grant from the Big Lottery Fund.
I have recently been involved in an initiative, led by Kidney Research UK and the British Renal Society, and supported by The Big Lottery Fund, Baxter Healthcare UK, Wyeth UK, Astellas Pharma Inc and Genzyme UK. to create 2 DVD modules which provide exactly this information and advice.
‘Living with Kidney disease’ is a unique health awareness DVD project that aims to support anyone who has been told by their doctor that they have some level of kidney damage. Participants in the production of the DVD included BRS, Kidney Research UK, the Renal Association, the British Transplantation Society and the National Kidney Federation. Importantly, the content of the DVD has been driven by patients who themselves are suffering from CKD and who can provide a first hand view of their experiences.
The first module in this series is for those individuals who have been newly diagnosed with chronic kidney disease (CKD). This programme, presented by Dr Chris Steele from ITV’s This Morning, outlines what the kidneys do and the background to CKD. Most importantly, it covers what can be done in terms of both diet and lifestyle changes to prevent further damage to the kidneys and to reduce the associated risks of stroke and heart attack.
This module was launched on World Kidney Day earlier this year which, as well as aiming to raise renal care further up the political agenda, also reached out to communities in a bid to highlight the disease to specific high-risk groups including South Asians, Black African Caribbeans, people with diabetes, people with hypertension, obese individuals, smokers, and those with a history of vascular or kidney disease.
The second DVD, presented by Fiona Loud (Chair of the Kidney Alliance and someone with kidney disease) offers further practical advice and is aimed particularly at those individuals with more advanced kidney disease, or those who are just about to start dialysis. This DVD, which was recently launched at the National Kidney Federation Conference, discusses topics such as treatment choice - something which has to fit both the patient’s medical needs and lifestyle, transplantation options and practicalities such as employment and financial issues.
The advent of widespread eGFR reporting means that in the next couple of years large numbers of people will learn for the first time that they have CKD. This DVD will be a valuable resource to help patients (and clinicians advising patients) through this difficult period. The focus of the DVD is the lengthening and improving the quality of life of people with CKD; it covers diet and lifestyle advice, as well as accurate, honest and encouraging information on monitoring disease and health.
These DVDs are unique in that the material contained in them has been written by patients and is presented in a simple and positive way. Additionally, there are options to view the DVDs with subtitles in English and audio in English, Bengali, Gujarati, Urdu and Punjabi.
Have a look here to see what it looks like. Individual copies of the DVDs can be ordered on line at www.kidneyresearchuk.org/dvdproject. For bulk orders contact Kidney Research UK.
This project was supported by Baxter Healthcare UK, Wyeth UK, Astellas Pharma Inc., Genzyme UK and a grant from the Big Lottery Fund.
If you permit it, you promote it – MRSA remains a kidney problem
Kidney services remain in the “MRSA spotlight”. The first quarterly mandatory enhanced staphlococcal surveillance reporting to include the renal data subset – containing information on dialysis modality and access type – were published on 1 November 2007. The results are mixed. One of the problems is sharing the MESS record between the mico-biology department and kidney services. All in all data returns were disappointing, with a low completion rate of the renal additional renal information. Some of this in undoubtedly due to system issues, such as duplicates, lack of correct assignment or the incorrect contact details in the main unit, but the renal community do need to help. It is the first quarter that the system has been operating so 46% completion must be seen in that light but there is no room for complacency when it comes to data quality. However, there are reasons for cautious optimism regarding the national picture with the proportion of MRSA bloodstream infections related to renal patients falling by a quarter from 8% (2006) to 6% (2007) of the total MRSA bloodstream infections reported in England.
Those headline results of course hide the local picture. Some units have achieved and maintained dramatic reductions, a few units never had a problem and worryingly, despite ostensibly good efforts, several units show a deteriorating picture. The numbers are so small that statistical comparison is inappropriate but the patients affect and our CEO colleagues will have noticed!!
If you have any difficulty with the MESS system do contact Richard Fluck on Richard.fluck@nhs.net or 01332 789344 (direct line) or for more information on the Renal MRSA action plan and how you can apply that locally contact Mercia Spare on Mercia.Spare@dh.gsi.gov.uk or 020 797 7396.
The Health Projection Agency's (HPA) latest MRSA bacteraemia results; reports and individual Trust listings are available here.
Those headline results of course hide the local picture. Some units have achieved and maintained dramatic reductions, a few units never had a problem and worryingly, despite ostensibly good efforts, several units show a deteriorating picture. The numbers are so small that statistical comparison is inappropriate but the patients affect and our CEO colleagues will have noticed!!
If you have any difficulty with the MESS system do contact Richard Fluck on Richard.fluck@nhs.net or 01332 789344 (direct line) or for more information on the Renal MRSA action plan and how you can apply that locally contact Mercia Spare on Mercia.Spare@dh.gsi.gov.uk or 020 797 7396.
The Health Projection Agency's (HPA) latest MRSA bacteraemia results; reports and individual Trust listings are available here.
Wednesday, 14 November 2007
Q & A: The Renal NSF
Q: Dear Donal, as a part of my degree I am in the process of researching into the impact of a policy on service users. I have chosen to look at the renal NSF, in particular Part 2, the prevention and dectection of CKD. I was just wondering if you had an particular statistics or accounts of how its implementation has been a success. I have read the reoprt from 2007, plus the information on the eGFR implementation and wondered if you had any figures on the success of its uptake, how many PCTS are now referring or feedback from them about the difficulties they are facing with the policy?
Any information would be of great use. Thank you very much for your assistance.
Alice Kershberg, 3rd Year Nursing Student, Kings College London
A: Well Alice that is a great question. The topic of the pressures that introducing eGFR reporting have generated within the renal community was discussed in detail at the last Clinical Directors Forum of the Renal Association. A lot of examples of good practice were quoted from across the UK. In brief I think it would be fair to characterise success as joined up pathway working between primary and secondary care, a systematic approach to implementing the UK CKD guidelines along with adopting eGFR reporting and testing new referrals and follow up appointments in renal clinics with the question “is this adding value to patient care?”.
A number of the posters and presentations given at the Clinical Directors Forum on 3 March 2007 are available at http://www.renal.org/ServiceProvision/CDforum2007.html .
However, it would be misleading not to acknowledge that in certain parts of the country pressures have been intense. A survey of clinical directors undertaken by the Renal Association (available here) showed that 2/3 of units felt they had insufficient capacity to cope. Between 40-90% of referrals were being seen and the consultants felt that there had been an increase of about 50% in referrals that were considered appropriate. This was matched by a similar increase in inappropriate referrals. One individual felt there had been 1000 fold increase in inappropriate referrals! Clearly, they were under a lot of pressure that day!!
Finally, we have just received information from the Information Centre on primary care performance in the chronic kidney disease domain of the Quality and Outcomes Framework. It shows an overall prevalence of chronic kidney disease in England of 3% but there is marked variation between Strategic Health Authority and even greater variation at PCT and practice levels. This suggests to me that the system has managed the introduction of eGFR reporting and initial management of CKD in primary care well but there is still quite a bit to do particularly with regard to education and training and the early identification and management of kidney disease in the practices with lower than expected rates of detection. Of course the Quality and Outcomes Framework doesn’t contain information on proteinuria testing and this is likely to be a major driver for both the increased vascular risk and the risk of progressive kidney disease. We know from anecdotal information and some local studies that proteinuria testing has increased. I suspect that proteinuria testing in chronic kidney disease will become standard practice in line with the national guidance over the next few years.
Given the fact that we are only one year into the new world of chronic kidney disease being an issue for both primary and secondary care, I think we have come a long way. The increased awareness of chronic kidney disease will surely improve medicines management in this group of patients. Blood pressure and vascular control measures are likely to reduce vascular events in this high risk group and I like others am hopeful that it will reduce the number of people who “crash land” or present as an acute uraemic emergency previously unknown to kidney services.
Any information would be of great use. Thank you very much for your assistance.
Alice Kershberg, 3rd Year Nursing Student, Kings College London
A: Well Alice that is a great question. The topic of the pressures that introducing eGFR reporting have generated within the renal community was discussed in detail at the last Clinical Directors Forum of the Renal Association. A lot of examples of good practice were quoted from across the UK. In brief I think it would be fair to characterise success as joined up pathway working between primary and secondary care, a systematic approach to implementing the UK CKD guidelines along with adopting eGFR reporting and testing new referrals and follow up appointments in renal clinics with the question “is this adding value to patient care?”.
A number of the posters and presentations given at the Clinical Directors Forum on 3 March 2007 are available at http://www.renal.org/ServiceProvision/CDforum2007.html .
However, it would be misleading not to acknowledge that in certain parts of the country pressures have been intense. A survey of clinical directors undertaken by the Renal Association (available here) showed that 2/3 of units felt they had insufficient capacity to cope. Between 40-90% of referrals were being seen and the consultants felt that there had been an increase of about 50% in referrals that were considered appropriate. This was matched by a similar increase in inappropriate referrals. One individual felt there had been 1000 fold increase in inappropriate referrals! Clearly, they were under a lot of pressure that day!!
Finally, we have just received information from the Information Centre on primary care performance in the chronic kidney disease domain of the Quality and Outcomes Framework. It shows an overall prevalence of chronic kidney disease in England of 3% but there is marked variation between Strategic Health Authority and even greater variation at PCT and practice levels. This suggests to me that the system has managed the introduction of eGFR reporting and initial management of CKD in primary care well but there is still quite a bit to do particularly with regard to education and training and the early identification and management of kidney disease in the practices with lower than expected rates of detection. Of course the Quality and Outcomes Framework doesn’t contain information on proteinuria testing and this is likely to be a major driver for both the increased vascular risk and the risk of progressive kidney disease. We know from anecdotal information and some local studies that proteinuria testing has increased. I suspect that proteinuria testing in chronic kidney disease will become standard practice in line with the national guidance over the next few years.
Given the fact that we are only one year into the new world of chronic kidney disease being an issue for both primary and secondary care, I think we have come a long way. The increased awareness of chronic kidney disease will surely improve medicines management in this group of patients. Blood pressure and vascular control measures are likely to reduce vascular events in this high risk group and I like others am hopeful that it will reduce the number of people who “crash land” or present as an acute uraemic emergency previously unknown to kidney services.
Friday, 2 November 2007
bedtime reading: Age affects outcomes in chronic kidney disease
JASN, October 2007 Vol 18 No 10
Age Affects Outcomes in Chronic Kidney Disease
Ann M O'Hare, Andy I Choi, Daniel Berenthal, Peter Bacchetti, Amit X Garg, James S Kaufman, Louise C Walter, Kala M Mehta, Michael A Steinman, Michael Allon, William M McClellan, C Seth Landefeld
Concludes that age is a major modifier of outcome in people with Stage 3-5 CKD challenging us to move beyond a uniform stage based approach to CKD.
abstract
full text
Age Affects Outcomes in Chronic Kidney Disease
Ann M O'Hare, Andy I Choi, Daniel Berenthal, Peter Bacchetti, Amit X Garg, James S Kaufman, Louise C Walter, Kala M Mehta, Michael A Steinman, Michael Allon, William M McClellan, C Seth Landefeld
Concludes that age is a major modifier of outcome in people with Stage 3-5 CKD challenging us to move beyond a uniform stage based approach to CKD.
abstract
full text
Guest Blogger: Patient Education - it's an interactive process
My name is Miranda Dodwell and I am delighted to be asked by Donal to be his first guest blogger. I was diagnosed with polycystic kidney disease nearly 25 years ago and had a live donor transplant about 18 months ago which has been very successful.
I’m quite new to being a renal patient representative, but have been a ‘service user representative’ in maternity services for some years. Interestingly maternity services don’t have ‘patients’ and I have found it quite difficult to become one myself!
The year before my transplant felt very difficult. Taking a lot of medication; coming to terms with being seriously ill; adjusting my lifestyle to cope; and looking after my children and all their fears for me were just some of the issues. But it was probably no harder for me than for anyone else in the same situation.
And so many questions! What would life be like after a transplant? Was I doing the right thing? What if my donor fell through? Would I need dialysis? How would that be? Again, I’m sure I wasn’t the only one in that situation - but it felt like that. I was wonderfully supported by friends and family and my lovely consultant (who put up with quite a lot from me) but no-one could really understand what it was like.
At the time I was working as a childbirth educator, teaching antenatal classes for the National Childbirth Trust (NCT). These classes were groups of pregnant women meeting up each week to learn about pregnancy, childbirth and living with a new baby, and to understand decisions they might have to make. I offered them different learning activities; games, work in small groups, discussions, practical skills and brainstorming sessions. The classes drew on the participants’ own knowledge, experiences and feelings, and I was there to facilitate that learning process and share what I knew when appropriate. Over the sessions, the groups would bond and become an important support network for each other. Some of the discussions were difficult, like talking about losing a baby, but it was a safe environment for people to talk about their worst fears and also their greatest hopes. The women came out of the classes confident and empowered.
I couldn’t help but draw parallels with my own needs as a ‘kidney patient’. I wanted a place like that, where I could go and have my questions answered by someone who could listen and understand. I wanted to meet other people in the same position as me and find out what they knew and how they coped. I wanted to know what all my options were, and how they related to me personally, not just watch some DVD at home by myself.
This idea of having ‘renal replacement therapy preparation classes’ has been in the back of my mind ever since. As luck would have it, I met Donal recently. We fell into discussing the education of pre-dialysis patients and I was able to suggest this to him. I’m now looking at implementing this at my local hospital. If it works out, maybe Donal will let me borrow his blog again, and I can let you know!
Miranda Dodwell
Patient Representative
I’m quite new to being a renal patient representative, but have been a ‘service user representative’ in maternity services for some years. Interestingly maternity services don’t have ‘patients’ and I have found it quite difficult to become one myself!
The year before my transplant felt very difficult. Taking a lot of medication; coming to terms with being seriously ill; adjusting my lifestyle to cope; and looking after my children and all their fears for me were just some of the issues. But it was probably no harder for me than for anyone else in the same situation.
And so many questions! What would life be like after a transplant? Was I doing the right thing? What if my donor fell through? Would I need dialysis? How would that be? Again, I’m sure I wasn’t the only one in that situation - but it felt like that. I was wonderfully supported by friends and family and my lovely consultant (who put up with quite a lot from me) but no-one could really understand what it was like.
At the time I was working as a childbirth educator, teaching antenatal classes for the National Childbirth Trust (NCT). These classes were groups of pregnant women meeting up each week to learn about pregnancy, childbirth and living with a new baby, and to understand decisions they might have to make. I offered them different learning activities; games, work in small groups, discussions, practical skills and brainstorming sessions. The classes drew on the participants’ own knowledge, experiences and feelings, and I was there to facilitate that learning process and share what I knew when appropriate. Over the sessions, the groups would bond and become an important support network for each other. Some of the discussions were difficult, like talking about losing a baby, but it was a safe environment for people to talk about their worst fears and also their greatest hopes. The women came out of the classes confident and empowered.
I couldn’t help but draw parallels with my own needs as a ‘kidney patient’. I wanted a place like that, where I could go and have my questions answered by someone who could listen and understand. I wanted to meet other people in the same position as me and find out what they knew and how they coped. I wanted to know what all my options were, and how they related to me personally, not just watch some DVD at home by myself.
This idea of having ‘renal replacement therapy preparation classes’ has been in the back of my mind ever since. As luck would have it, I met Donal recently. We fell into discussing the education of pre-dialysis patients and I was able to suggest this to him. I’m now looking at implementing this at my local hospital. If it works out, maybe Donal will let me borrow his blog again, and I can let you know!
Miranda Dodwell
Patient Representative
bedtime reading: End stage renal disease in the US: an update from the US renal data system
JASN, October 2007 Vol 18, No 10
End-Stage Renal Disease in the United States: An Update from the United States Renal Data System
Robert N Foley and Allan J Collins
Shows modest in survival but startling increases in cost. Reflecting the growth in the size of the ESRD population associated costs grew by 57% between 1999 and 2004 and now account for 6.7% of the total Medicare expenditures.
abstract
full text
End-Stage Renal Disease in the United States: An Update from the United States Renal Data System
Robert N Foley and Allan J Collins
Shows modest in survival but startling increases in cost. Reflecting the growth in the size of the ESRD population associated costs grew by 57% between 1999 and 2004 and now account for 6.7% of the total Medicare expenditures.
abstract
full text
Thursday, 1 November 2007
bedtime reading: Sevelamer: a promising but unproven drug
NDT (2007) 22: 2742-2745
Sevelamer: a promising but unproven drug
Suetonia C Palmer, Jonathan C Craig, Giovanni F M Strippoli
The accompanying articles from Tonelli's group in Alberta in the same issue are reviewed with the other recent papers on CKD - BMD to provide a balanced view of where we are now and that hope that further studies like EVOLVE will answer some of the important questions in bone mineral disorders.
Sevelamer: a promising but unproven drug
Suetonia C Palmer, Jonathan C Craig, Giovanni F M Strippoli
The accompanying articles from Tonelli's group in Alberta in the same issue are reviewed with the other recent papers on CKD - BMD to provide a balanced view of where we are now and that hope that further studies like EVOLVE will answer some of the important questions in bone mineral disorders.
Q & A: Patient Choice
Q: I am very concerned that so few patients in our unit start on PD - about 6% compared to the national average of around 24% being on PD at 90 days. Not only does this imply that patients are not being educated appropriately or being enabled to have choice regarding treatment options, but also there must be significant financial implications as HD costs more than PD. My questions are:
1. The NSF clearly states that patients should be educated and given choice - so how is the NSF monitored to ensure that this happens?
2. Can commissioners ask why treatment choices and costs are different compared to the national average?
3. Have there been any outcomes from the Dept of Health workshops earlier this year on patient satisfaction and home therapies?
A: Thank you for raising this issue. The quality of patient choice is highlighted in the NSF and I think, as you imply, there are things that we can do now but, as is often the case in renal medicine, we are somewhat hampered by lack of evidence and in particular a robust tool to assess the quality of choice we offer our patients.
Turning to what can be expected at present:
1. The NSF clearly states that patients should be educated and given choice - so how is the NSF monitored to ensure that this happens?
2. Can commissioners ask why treatment choices and costs are different compared to the national average?
3. Have there been any outcomes from the Dept of Health workshops earlier this year on patient satisfaction and home therapies?
A: Thank you for raising this issue. The quality of patient choice is highlighted in the NSF and I think, as you imply, there are things that we can do now but, as is often the case in renal medicine, we are somewhat hampered by lack of evidence and in particular a robust tool to assess the quality of choice we offer our patients.
Turning to what can be expected at present:
- Commissioners. The commissioners have a role in ensuring that their clients, our patients, are offered choice. Where units are outlyers it is incumbent on the commissioners to examine why that is and they should be asking units to explain the patterns of care. In particular, as you know, all Trusts are expected to be able to demonstrate that they have offered home haemodialysis.
- Patient representatives and individual patients have a role. In many networks patients are represented at all levels. I think the general feeling is, and several people have expressed to me, that when patients are “in the room” behaviour and actions more closely match patients’ aspirations than when planning and implementation is the exclusive preserve of the healthcare professionals. Some units, such as Guys & St Thomas' have befriender schemes where “accredited” patients provide support and act as a resource for people approaching or at end stage renal failure.
- Provider teams - clinicians and managers. Several units have a systematic approach to examining their pattern of care and “place in the league tables” with regard to the Registry outputs. I presume groups like that Pan Thames Audit Group also provide a similar forum for reflection and questioning practice.
The reports of the Department of Health Renal Advisory Group workshops on home dialysis therapies and patient experience and choice will be published in November. The latter workshop developed a checklist for people on dialysis is primarily aimed at people on haemodialysis, but is has been piloted and hopefully will be ready for general release shortly. We have made some progress with the DH actions from the choosing home renal therapies workshop. In particular, the importance of choice and its implications in planning were discussed in some detail at the first meeting of the 10 Specialised Commissioning Groups we held in September. Ensuring that pre-dialysis care is developed and that choice is integral to service delivery has been flagged as part of the Payment by Results (PbR) Project which is about to begin. This will provide an opportunity to examine costs in units with different proportions of patients on haemodialysis and peritoneal dialysis. I will also be arguing strongly that patient choice and experience metrics should be considered as part of the 18 week pathway project. The latter will cover the whole of chronic kidney disease, one difficult question is how to manage stopping and starting the clock; this will be one of the first 18 week pathways that doesn’t have a “surgical outcome”. The 18 week team seemed to support the idea that the output is a care plan that the patient has – within that I would expect to see evidence of discussion of the various modalities.
Of course each dialysis modality is clinically satisfactory for the majority of patients. The issue really is one of choice. As regards specific NSF monitoring of choice, we do not have such a mechanism in place other than for home haemodialysis where units should be able to provide evidence that they have offered this modality to suitable patients. We do of course have comparative data between units submitted and published by the Renal Registry.
One very interesting idea that Miranda Dodwell, who I met at the Renal Advisory Group on Primary Secondary Care Informatics and who has a keen interest in patient education, has suggested is renal replacement therapy preparation classes. Miranda will be my first guest blogger soon outlining the potential parallels with birth and parenthood preparation classes run successfully within the NHS by midwives, by charities such as the National Childbirth Trust and by NCT teachers contracted to the NHS, which occurs in some Trusts, for example, at the Birmingham Women’s Hospital. Dr Sandip Mitra (Consultant Renal Physician, Central Manchester & Manchester Children’s NHS Trust) runs a very innovative workshop style programme with the multi-disciplinary team, with mannequins and machines for patients together with their carers to get a much better understanding of the options available.
I appreciate that my comments do not provide a solution to this wicked problem but hopefully they provide some opportunity to examine the issue from a number of perspectives. Read an interesting article on wicked problems here.
I would appreciate any comments you may have. I would also appreciate guidance on any work that may be in progress to provide tools to assess quality of choice and I am happy to continue dialogue on this topic.
bedtime reading: Clinical research of kidney diseases II: problems of study design
NDT (2007) 22: 2785-2794
Clinical research of kidney diseases II: problems of study design
Pietro Ravani, Patrick S Parfrey, Elizabeth Dicks and Brendan J Barrett
Thoughtful review article on the types of study design to answer particular questions. A helpful description of the pitfalls and ways to avoid them for kidney researchers.
Clinical research of kidney diseases II: problems of study design
Pietro Ravani, Patrick S Parfrey, Elizabeth Dicks and Brendan J Barrett
Thoughtful review article on the types of study design to answer particular questions. A helpful description of the pitfalls and ways to avoid them for kidney researchers.
Wednesday, 31 October 2007
Using the QOF data locally
“If you can measure that of which you speak and express it is numbers, you know something about your subject; if you cannot measure it, your knowledge is of a very meagre and unsatisfactory kind”, William Thompson (Lord Kelvin) (1824-1907).
In the same city, 100 years after the death of Lord Kelvin the Scottish Primary Care Collaborative chose (SPCC) CKD as one of their target areas for 2008. Mark Macgregor (Consultant Nephrologist at Crosshouse Hospital, Kilmarnock), tells me that he thinks the focus will be on proteinuria and adding quality to care rather than just a kneejerk response to the low prevalence of 1.8% reported from Scotland in comparison to the other home countries. This low prevalence is thought to relate to delays in systematic eGFR reporting and that in many parts of Scotland, General Practitioners only get the results that they have requested into their EPR systems. As we know, many people with CKD are seen in a variety of secondary care settings because of their associated co-morbidities.
The Scottish Primary Care Collaborative is a programme designed to remodel the way general practice works and The Improvement Foundation (previously known as the National Primary Care Development Team – why do things change their names so quickly?), headed by Sir John Oldham, have assisted with the Scottish programme.
To date there have been almost 500 GP practices participating in the SPCC and their improvement results are impressive. Take diabetes or CHD as examples
I think this is great news for people with CKD in Scotland and it is perhaps a model that can be adopted elsewhere to build on the platform of the visibility that the CKD domain of the QOF has brought to add real value.
Similar approaches are being taken in parts of England. Nicky Coffey (Associate Director, South East Coast, SCG) with Ian John (Consultant Renal Physician, East Kent Hospitals NHS Trust) who have established a formal CKD Network across primary care across the catchment population of East Kent Hospitals NHS Trust. The Terms of Reference make it clear that this Network is about processes and pathways rather than structures.
The percentage of the population with an MDRD eGFR below 60 mmols/min/ 1.73m2 is not the issue. The issue is, of course, the quality of care that can be delivered using the chronic disease management model for registered populations.
A word of caution about measurements. “Not everything that counts can be counted, and not everything that is counted counts” Albert Einstein (1879-1955),
In the same city, 100 years after the death of Lord Kelvin the Scottish Primary Care Collaborative chose (SPCC) CKD as one of their target areas for 2008. Mark Macgregor (Consultant Nephrologist at Crosshouse Hospital, Kilmarnock), tells me that he thinks the focus will be on proteinuria and adding quality to care rather than just a kneejerk response to the low prevalence of 1.8% reported from Scotland in comparison to the other home countries. This low prevalence is thought to relate to delays in systematic eGFR reporting and that in many parts of Scotland, General Practitioners only get the results that they have requested into their EPR systems. As we know, many people with CKD are seen in a variety of secondary care settings because of their associated co-morbidities.
The Scottish Primary Care Collaborative is a programme designed to remodel the way general practice works and The Improvement Foundation (previously known as the National Primary Care Development Team – why do things change their names so quickly?), headed by Sir John Oldham, have assisted with the Scottish programme.
To date there have been almost 500 GP practices participating in the SPCC and their improvement results are impressive. Take diabetes or CHD as examples
I think this is great news for people with CKD in Scotland and it is perhaps a model that can be adopted elsewhere to build on the platform of the visibility that the CKD domain of the QOF has brought to add real value.
Similar approaches are being taken in parts of England. Nicky Coffey (Associate Director, South East Coast, SCG) with Ian John (Consultant Renal Physician, East Kent Hospitals NHS Trust) who have established a formal CKD Network across primary care across the catchment population of East Kent Hospitals NHS Trust. The Terms of Reference make it clear that this Network is about processes and pathways rather than structures.
The percentage of the population with an MDRD eGFR below 60 mmols/min/ 1.73m2 is not the issue. The issue is, of course, the quality of care that can be delivered using the chronic disease management model for registered populations.
A word of caution about measurements. “Not everything that counts can be counted, and not everything that is counted counts” Albert Einstein (1879-1955),
Tuesday, 30 October 2007
Monday, 29 October 2007
Friday, 26 October 2007
bedtime reading: The End of the Disease Era
The American Journal of Medicine, February 2004 Bol 116
Mary E Tinetti MD, Terry Fried MD
http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&uid=14749162&cmd=showdetailview&indexed=google
Mary E Tinetti MD, Terry Fried MD
http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&uid=14749162&cmd=showdetailview&indexed=google
bedtime reading: Hope and advance care planning in patients with end stage renal disease: qualitative interview study
BMJ 28 October
BMJ.com
Objective: to understand hope in the context of advance care planning from the perspective of patients with end stage renal disease.
BMJ.com
Objective: to understand hope in the context of advance care planning from the perspective of patients with end stage renal disease.
bedtime reading: Fistula First Initiative: Advantages and Pitfalls
Clinical Journal of the American Society of Nephrology, Sept 2007, Vol 2 No 5
Charmaine E Lok
Charmaine E Lok
bedtime reading: Renal Provider Recognition of Symptoms in Patients on MHD
Clinical Journal of the American Society of Nephrology, Sept 2007,Vol 2 No 5
Steven D Weisbord, Linda F Fried, Maria K Mor et al
Steven D Weisbord, Linda F Fried, Maria K Mor et al
bedtime reading: NICE: Behaviour change at population, community and individual levels, October 2007
NICE public health guidance 6Can be downloaded from www.nice.org.uk/PH006
Summary - the guidance highlights the need to:
- Plan carefully interventions and programmes aimed at changing behaviour, taking into account the local and national context and working in partnership with recipients. Interventions and programmes should be based on a sound knowledge of community needs and should build upon the existing skills and resources within a community.
- Equip practitioners with the necessary competencies and skills to support behaviour change, using evidence-based tools. (Education providers should ensure courses for practitioners are based on theoretically informed, evidencebased best practice.)
- Evaluate all behaviour change interventions and programmes, either locally or as part of a larger project. Wherever possible, evaluation should include an economic component.
Thursday, 25 October 2007
Champions - Renal Team of the Year!
Earlier this month it was my pleasure to visit 3 outstanding renal units - St Helier, Derby and Portsmouth. I hasten to add I visited in this order! (I don't want to give anything away regarding the final "scoring"). I was visiting to judge the Hospital Kidney Doctor and Team of the Year Award and had hoped to visit with other members of the multiprofessional renal team and with service users. That request came as a bit of a surprise to the organisers. It also demonstrates how far kidney care is ahead of the mainstream. We recognise that the patient experience and clinical outcomes are determined by every member of the team - including patients and carers.
I am pleased that Fiona Loud, a lady who is a renal transplant recipient and who was previously on dialysis, will be making the award to the top team with me in London next month. Fiona is Chair of the Kidney Alliance and we will make the award jointly to emphasise the fact that patients are the true judge of the quality of our services and care.
I knew that the job would be tough. There were 25 submissions in all - over a third of renal units. All were good and many were very good. Shortlisting to identify the top 3 was difficult enough!
In all 3 units I found a culture of patient centred care, multiprofessional working and commitment to quality. In each I had a chance to look around the facilities and talk with patients and staff. Chatting to patients on dialysis can be very revealing. In each unit, patients were also members of the team that presented to "showcase" their unit's successes. I was particularly encouraged to see that patient representatives and carers were part of the decision making in clinical governance groups in each centre. The professional team spirit was strong at each site despite the differences in their histories, models of care and research activities.
The "acid test" - would I go there or recommend the service to a close friend or relative - "yes" for all 3! Training in each of these units would add value - for nurses, doctors, pharmacists, dietitians ..... the lot. Apologies for trunkating the list but if I didn't and I missed a group off I would be in trouble! The experience in these units would teach team work, joint problem solving with patients and would be tremendous fun. The standard of care, attention to detail and support for people with kidney disease is exceptional in all 3. Portsmouth have a mission statement, renal patients come first, organisation comes second. The same philosophy pertains at St Helier and Derby City Hospital.
Epsom & St Helier University Teaching Hospitals NHS Trust was my first port of call. Jonathan Kwan met me, introduced me to lots of staff and showed me around. It was Monday and many of the consultants were out at local clinics. The number, frequency and range of local support this team provides across their whole patch is remarkable. Patients don't travel unless absolutely necessary. The inpatients, outpatient suite, dialysis and transplant units and research laboratories are all integrated - if not necessarily purpose built. I was struck by the comment made by Dr Paul Colville-Nash "walking by the dialysis unit to the lab every day really brings it home to you, why we are here and what we are trying to do". The South West Thames Institute for Renal Research is funded primarily by charitable donations - not least, major income from Jonathan Kwan’s marathon running!
Education is high on the agenda at the South West Thames Renal & Transplant Unit. The team have undertaken a root and branch analysis and reform of their education strategy over the past 5 years. Sue Woodcock and Blossom Keddo gave a overview as part of the team’s presentation. The effect of education, learning and development has been improvement in recruitment and retention, a virtual academy of nurses, doctors, dietitians and other healthcare professionals engaged in higher diplomas and degrees and development of good practice. The unit is always well represented at meetings and not only sustains its good practice but builds on that with new quality initiatives and writes up and promotes systems that can be adopted by others across the NHS. The team don’t just “do” education, they evaluate it and link it to the Trust’s key performance indicators. I wasn’t surprised to learn that the unit has the Investor in People award but the fact that there are zero staff vacancies did raise my eyebrows and underlines the quality of the organisation.
Next up were Derby. I was able to drive which was a bonus and I was able to park at the hospital! Over the past 10 years, Derby has gone from a single handed consultant practice to a thriving service, research and teaching centre. That hasn’t been achieved without hard work but Richard Fluck is more than just a hard working chap. What Richard brought was a vision of what could be achieved. His energy and motivation coupled with an attention to detail and the ability to make progress on the small things are behind the strength of the unit today. He has chosen the people he works with wisely, some pre-date his arrival but all regard him with affection and seem to set his passion for high quality care for individuals as the benchmark against which they should be judged. In turn, Richard has supported and mentored colleagues and is rightly proud of the achievements of the staff he works with. The secret may be Rani Uppal whose title is personal assistant to the consultants but who might be more difficult to replace than any of the 5 consultants! I sat down with a few patients for an hour or so and their stories were very powerful. The message they gave was that “nothing is too much trouble” for the Derby team. I visited on a Tuesday morning and was somewhat surprised to see the clinic waiting room virtually empty. Richard explained that they have done away with queues by staggering appointments. Using flow methodology, waiting around is something that used to happen in the 20th century for Derby patients.
When clinical problems are encountered, they are approached from a scientific perspective – if the literature to support best practice is found to be wanting – that may spell a research opportunity. The research undertaken is truly translational from the bedside to the bench and back again. One of my deep concerns is the evidence base for kidney care. Kidney research is not yet a national priority and the funding for it is disproportionately low in comparison to clinical and economic impact. The NHS has been a difficult research environment. Over the past 5 years the Derby kidney team provides an example of what can be achieved even if the environment seems adverse. By aligning their research agenda to the needs of their patients and the markers of best practice of the Renal NSF key questions about vascular access related infections, haemodialysis and early kidney disease have been answered. As ever, the answers to the questions beg more questions so rest assured, the research team isn’t resting on its laurels.
Last, but not least, Portsmouth Hospitals NHS Trust. I had to change the time of the visit at short notice but despite that, Rob Lewis and his team gave me a warm reception. Rob made the point that it’s not just where you are, it’s where you came from and where you are going. The Portsmouth unit is going from strength to strength. But look where it’s come from. In 2002 an external review judged the unit to be “backward and unsafe”. A highly critical report concluded with the statement “ … the combined result is a risk to patient care”. Well not any more. The enthusiasm, skills, attention to detail and team spirit were as strong in Portsmouth as in St Helier and Derby. The one striking difference was that Portsmouth “hide their light under a bushel”. I saw lots of innovative practice – a DVD for people with advanced kidney disease to help them with their choices, a peritoneal dialysis team who visit the ward and counsel crash landers so that they can benefit from this modality and avoid the risk of catheter related sepsis, a close working relationship with primary care that has helped avoid unnecessary and inappropriate referrals since the introduction of eGFR and a “can do” attitude to solving real problems that people with kidney disease and the staff managing them face in the NHS.
The clinical governance structures and systems that Dr Lewis and the team have put in place testified to the power of governance in improving quality of care. With the structures in place the focus is on processes and pathways – the things that matter to patient experience and clinical outcomes.
Instead of losing the transplant service it is, to use transplant surgeon Paul Gibbs phrase “not just alive but kicking”. Paul and his colleagues ensure that vascular access waiting times are minimal. MRSA rates have fallen dramatically. Practices that don’t add value such as taking a long car or ambulance journey to receive intravenous iron are eliminated.
Delivery of the service is as close to patients’ homes as possible. More than half of the outpatient consults take place away from the Portsmouth base. Community care is supported by a nursing team. Peritoneal dialysis is strong but surprisingly, to me, no patients have elected for home haemodialysis even though I saw with my own eyes that this choice is being offered and is included in the patient facing material.
Every kidney unit in the country has been faced with an increased awareness of kidney disease since the publication of the Renal NSF, adoption of the chronic kidney disease staging system and introduction of both standardised eGFR reporting and a chronic kidney disease domain in the General Practice Quality and Outcomes Framework. The clinicians in St Helier, Derby and Portsmouth have each used the uncertainty these changes have introduced into primary care to begin a conversation about the management of early kidney disease. Each have had a systematic programme of post-graduate education for their local GPs and practice nurses. Electronic and fax systems for providing advice have been introduced in St Helier. Derby has a web-based system for education and support and as a consequence of this development have actually seen at reduction in referrals since the introduction of eGFR. In addition to being Clinical Director in Portsmouth Rob Lewis is also co-Chair with Nicola Thomas of the CKD Forum and you won’t be surprised to know that Rob and the Portsmouth team have worked closely with their primary care trust colleagues to fill the education gap that eGFR uncovered.
You may pour over what I have said to see if it reveals any inner secrets as to which unit I favour – the reality is they are all 3 super units. I would strongly encourage teams to visit these units and pick their brains – when it comes to patient quality don’t be afraid to steal good ideas. I said at the beginning of the piece that it was difficult to shortlist – well I can tell you, it is even more difficult to choose a winner and I haven’t yet been able to do that so watch this space.
I am pleased that Fiona Loud, a lady who is a renal transplant recipient and who was previously on dialysis, will be making the award to the top team with me in London next month. Fiona is Chair of the Kidney Alliance and we will make the award jointly to emphasise the fact that patients are the true judge of the quality of our services and care.
I knew that the job would be tough. There were 25 submissions in all - over a third of renal units. All were good and many were very good. Shortlisting to identify the top 3 was difficult enough!
In all 3 units I found a culture of patient centred care, multiprofessional working and commitment to quality. In each I had a chance to look around the facilities and talk with patients and staff. Chatting to patients on dialysis can be very revealing. In each unit, patients were also members of the team that presented to "showcase" their unit's successes. I was particularly encouraged to see that patient representatives and carers were part of the decision making in clinical governance groups in each centre. The professional team spirit was strong at each site despite the differences in their histories, models of care and research activities.
The "acid test" - would I go there or recommend the service to a close friend or relative - "yes" for all 3! Training in each of these units would add value - for nurses, doctors, pharmacists, dietitians ..... the lot. Apologies for trunkating the list but if I didn't and I missed a group off I would be in trouble! The experience in these units would teach team work, joint problem solving with patients and would be tremendous fun. The standard of care, attention to detail and support for people with kidney disease is exceptional in all 3. Portsmouth have a mission statement, renal patients come first, organisation comes second. The same philosophy pertains at St Helier and Derby City Hospital.
Epsom & St Helier University Teaching Hospitals NHS Trust was my first port of call. Jonathan Kwan met me, introduced me to lots of staff and showed me around. It was Monday and many of the consultants were out at local clinics. The number, frequency and range of local support this team provides across their whole patch is remarkable. Patients don't travel unless absolutely necessary. The inpatients, outpatient suite, dialysis and transplant units and research laboratories are all integrated - if not necessarily purpose built. I was struck by the comment made by Dr Paul Colville-Nash "walking by the dialysis unit to the lab every day really brings it home to you, why we are here and what we are trying to do". The South West Thames Institute for Renal Research is funded primarily by charitable donations - not least, major income from Jonathan Kwan’s marathon running!
Education is high on the agenda at the South West Thames Renal & Transplant Unit. The team have undertaken a root and branch analysis and reform of their education strategy over the past 5 years. Sue Woodcock and Blossom Keddo gave a overview as part of the team’s presentation. The effect of education, learning and development has been improvement in recruitment and retention, a virtual academy of nurses, doctors, dietitians and other healthcare professionals engaged in higher diplomas and degrees and development of good practice. The unit is always well represented at meetings and not only sustains its good practice but builds on that with new quality initiatives and writes up and promotes systems that can be adopted by others across the NHS. The team don’t just “do” education, they evaluate it and link it to the Trust’s key performance indicators. I wasn’t surprised to learn that the unit has the Investor in People award but the fact that there are zero staff vacancies did raise my eyebrows and underlines the quality of the organisation.
Next up were Derby. I was able to drive which was a bonus and I was able to park at the hospital! Over the past 10 years, Derby has gone from a single handed consultant practice to a thriving service, research and teaching centre. That hasn’t been achieved without hard work but Richard Fluck is more than just a hard working chap. What Richard brought was a vision of what could be achieved. His energy and motivation coupled with an attention to detail and the ability to make progress on the small things are behind the strength of the unit today. He has chosen the people he works with wisely, some pre-date his arrival but all regard him with affection and seem to set his passion for high quality care for individuals as the benchmark against which they should be judged. In turn, Richard has supported and mentored colleagues and is rightly proud of the achievements of the staff he works with. The secret may be Rani Uppal whose title is personal assistant to the consultants but who might be more difficult to replace than any of the 5 consultants! I sat down with a few patients for an hour or so and their stories were very powerful. The message they gave was that “nothing is too much trouble” for the Derby team. I visited on a Tuesday morning and was somewhat surprised to see the clinic waiting room virtually empty. Richard explained that they have done away with queues by staggering appointments. Using flow methodology, waiting around is something that used to happen in the 20th century for Derby patients.
When clinical problems are encountered, they are approached from a scientific perspective – if the literature to support best practice is found to be wanting – that may spell a research opportunity. The research undertaken is truly translational from the bedside to the bench and back again. One of my deep concerns is the evidence base for kidney care. Kidney research is not yet a national priority and the funding for it is disproportionately low in comparison to clinical and economic impact. The NHS has been a difficult research environment. Over the past 5 years the Derby kidney team provides an example of what can be achieved even if the environment seems adverse. By aligning their research agenda to the needs of their patients and the markers of best practice of the Renal NSF key questions about vascular access related infections, haemodialysis and early kidney disease have been answered. As ever, the answers to the questions beg more questions so rest assured, the research team isn’t resting on its laurels.
Last, but not least, Portsmouth Hospitals NHS Trust. I had to change the time of the visit at short notice but despite that, Rob Lewis and his team gave me a warm reception. Rob made the point that it’s not just where you are, it’s where you came from and where you are going. The Portsmouth unit is going from strength to strength. But look where it’s come from. In 2002 an external review judged the unit to be “backward and unsafe”. A highly critical report concluded with the statement “ … the combined result is a risk to patient care”. Well not any more. The enthusiasm, skills, attention to detail and team spirit were as strong in Portsmouth as in St Helier and Derby. The one striking difference was that Portsmouth “hide their light under a bushel”. I saw lots of innovative practice – a DVD for people with advanced kidney disease to help them with their choices, a peritoneal dialysis team who visit the ward and counsel crash landers so that they can benefit from this modality and avoid the risk of catheter related sepsis, a close working relationship with primary care that has helped avoid unnecessary and inappropriate referrals since the introduction of eGFR and a “can do” attitude to solving real problems that people with kidney disease and the staff managing them face in the NHS.
The clinical governance structures and systems that Dr Lewis and the team have put in place testified to the power of governance in improving quality of care. With the structures in place the focus is on processes and pathways – the things that matter to patient experience and clinical outcomes.
Instead of losing the transplant service it is, to use transplant surgeon Paul Gibbs phrase “not just alive but kicking”. Paul and his colleagues ensure that vascular access waiting times are minimal. MRSA rates have fallen dramatically. Practices that don’t add value such as taking a long car or ambulance journey to receive intravenous iron are eliminated.
Delivery of the service is as close to patients’ homes as possible. More than half of the outpatient consults take place away from the Portsmouth base. Community care is supported by a nursing team. Peritoneal dialysis is strong but surprisingly, to me, no patients have elected for home haemodialysis even though I saw with my own eyes that this choice is being offered and is included in the patient facing material.
Every kidney unit in the country has been faced with an increased awareness of kidney disease since the publication of the Renal NSF, adoption of the chronic kidney disease staging system and introduction of both standardised eGFR reporting and a chronic kidney disease domain in the General Practice Quality and Outcomes Framework. The clinicians in St Helier, Derby and Portsmouth have each used the uncertainty these changes have introduced into primary care to begin a conversation about the management of early kidney disease. Each have had a systematic programme of post-graduate education for their local GPs and practice nurses. Electronic and fax systems for providing advice have been introduced in St Helier. Derby has a web-based system for education and support and as a consequence of this development have actually seen at reduction in referrals since the introduction of eGFR. In addition to being Clinical Director in Portsmouth Rob Lewis is also co-Chair with Nicola Thomas of the CKD Forum and you won’t be surprised to know that Rob and the Portsmouth team have worked closely with their primary care trust colleagues to fill the education gap that eGFR uncovered.
You may pour over what I have said to see if it reveals any inner secrets as to which unit I favour – the reality is they are all 3 super units. I would strongly encourage teams to visit these units and pick their brains – when it comes to patient quality don’t be afraid to steal good ideas. I said at the beginning of the piece that it was difficult to shortlist – well I can tell you, it is even more difficult to choose a winner and I haven’t yet been able to do that so watch this space.
Thursday, 4 October 2007
Our NHS our future
The interim report on the NHS written by Lord Darzi was published at 11.30 this morning – there were a lot of people involved in drafting the document. Many discussions about the placement of commas but Ara Darzi himself was up late and up again early doing much of the writing himself. It’s a high level synthesis of the views of staff, patients and the public of where we are now: a reiteration of our core principles and, to borrow a phrase from Sir Derek Wanless, it sets out a vision for “full engagement”.The letter to the Prime Minister sets out some of his personal views. Reading it will give you some insight into Lord Darzi’s values and beliefs.
Guess what I did when I got the final draft? No prizes; a word search on kidneys and renal!
The report is of course about generic issues and the kidney care pathway spans all of the workstreams that are being set up for the next stage of the review – maternity to end of life care. Primary care services, safer hospitals – for that read less healthcare associated infection and speedier innovation, are the main themes picked up by the press but the substance is in the detail of the next steps.
The Kings Fund Wanless report provided a clear assessment of how far we have come since the NHS Plan was launched in 2000. It demonstrates that the system isn’t fully engaged, progress has been patchy – coronary heart disease and cancer services are much improved but kidney services amongst others still lag a long way behind our European counterparts.
In many ways, I think how kidney services develop will be a real test of the reform. A service that needs to be developed almost from scratch in primary care, whose outcomes are so dependant on integration of care and a specialist service that grows year on year by 6-8% would challenge any system.
The next stage of the review gives everyone in the kidney community the opportunity to get involved in taking up these challenges. Big changes are afoot. Find out more and contribute at http://www.ournhs.nhs.uk/.
Monday, 17 September 2007
Back to School in Oxford
The Oxford-Ghent dialysis and transplant Summer School was held at Corpus Christi College in Oxford over last 
week. Paul Harden, Consultant Renal Physician at the Oxford Radcliffe Hospital invited me to talk on the Sunday about “timely vascular access” and I found the conference really buzzing. The School is in its 4th year and caters for senior nephrology trainees from northern Europe with most of the learning happening through interactive case based tutorials in true Oxbridge style. The programme covered key aspects of nephrology, dialysis and transplantation with a strong UK and European tutorial team.
Preparing for my talk I was again struck by the variance in definitive access across the UK – ranging from 44% to 94%. The message I take from that is that it is possible to provide timely and high quality access in the UK – but we are not doing it yet! A lot of the tools however are in place – timely access is an NSF must do, pathways have been published from the Modernising Renal Services Project, the Joint Societies Vascular Access Working Party report makes clear organisational and resource recommendations and data on access related MRSA bacteraemias is being collected via the MESS system. We are expecting a regular audit by the Healthcare Commission and Renal Registry. Richard Fluck, Consultant Nephrologist in Derby (richard.fluck@nhs.net) has even established a web 2.0 social networking site for healthcare professionals to share experience, support colleagues and spread good practice. But looking at the HES data, the hospital episodes statistics, for vascular access I am concerned that our coding is not as good as it needs to be – it looks to me that we are missing quite a lot of day case procedures and in some units the data really doesn’t add up. I have sent the HES data to all the clinical directors but if you would like to see your local data I am happy to provide it.
Three or 4 really challenging case were presented for panel discussion – my initial prejudice was that we may fall into the trap of talking about real rarities. I shouldn’t have been worried – the panel consisted of Alison Cornall, the first dialysis access nurse specialist in the country I think, Chris Darby, a practical and common sense Vascular Surgeon and Dr Raman Uberoi, an Interventional Radiologist. Several of the cases were of central stenosis. Chris made the point that the great vein stenoses we used to see with subclavian lines have now moved proximally and that brachial and superior vena caval occlusion can occur in a very short time. Cases of steel syndrome were also presented and the importance of delineating whether the steel is occurring in the context of a high flow or a low flow fistula emphasised. Alison commented that between 2005 and 2007 the Oxford Unit have gone from 15% of patients starting dialysis via an AVF to 68% by focussing attention on the pre dialysis patients. The overall prevalence of AVF use is in the haemodialysis population looked after by our Oxford colleagues, approximately 650 patients, is now 82% - well done! We also discussed approaches to crash landers, whether repeated in out femoral stab offered advantages over lines and when acute Tenckhoff catheter insertion should be performed.
It was fun to meet Alison and Chris again having worked with them on the Vascular Access Modernisation Initiative. The importance of a multidisciplinary team meeting for co-ordinating and problem solving was clear for all to see – do you have such a meeting every week or fortnight in your own unit? There is quite a lot of work in the cancer field that demonstrates the positive benefit of structured and mandated MDT meetings. So the cases gave us an opportunity to consider service design issues as well as pure clinical questions. In the same way, a regular MDT provides an opportunity to run and test quality improvement initiatives as well as co-ordinate individual care.
It is always enjoyable to go to Oxford and this trip was no exception (a view of Corpus Christi Quad from my room above). We don’t have that many opportunities to mix and meet with our European colleagues. If you get the opportunity I would recommend that you go to the next Oxford Ghent Summer School.
week. Paul Harden, Consultant Renal Physician at the Oxford Radcliffe Hospital invited me to talk on the Sunday about “timely vascular access” and I found the conference really buzzing. The School is in its 4th year and caters for senior nephrology trainees from northern Europe with most of the learning happening through interactive case based tutorials in true Oxbridge style. The programme covered key aspects of nephrology, dialysis and transplantation with a strong UK and European tutorial team.Preparing for my talk I was again struck by the variance in definitive access across the UK – ranging from 44% to 94%. The message I take from that is that it is possible to provide timely and high quality access in the UK – but we are not doing it yet! A lot of the tools however are in place – timely access is an NSF must do, pathways have been published from the Modernising Renal Services Project, the Joint Societies Vascular Access Working Party report makes clear organisational and resource recommendations and data on access related MRSA bacteraemias is being collected via the MESS system. We are expecting a regular audit by the Healthcare Commission and Renal Registry. Richard Fluck, Consultant Nephrologist in Derby (richard.fluck@nhs.net) has even established a web 2.0 social networking site for healthcare professionals to share experience, support colleagues and spread good practice. But looking at the HES data, the hospital episodes statistics, for vascular access I am concerned that our coding is not as good as it needs to be – it looks to me that we are missing quite a lot of day case procedures and in some units the data really doesn’t add up. I have sent the HES data to all the clinical directors but if you would like to see your local data I am happy to provide it.
Three or 4 really challenging case were presented for panel discussion – my initial prejudice was that we may fall into the trap of talking about real rarities. I shouldn’t have been worried – the panel consisted of Alison Cornall, the first dialysis access nurse specialist in the country I think, Chris Darby, a practical and common sense Vascular Surgeon and Dr Raman Uberoi, an Interventional Radiologist. Several of the cases were of central stenosis. Chris made the point that the great vein stenoses we used to see with subclavian lines have now moved proximally and that brachial and superior vena caval occlusion can occur in a very short time. Cases of steel syndrome were also presented and the importance of delineating whether the steel is occurring in the context of a high flow or a low flow fistula emphasised. Alison commented that between 2005 and 2007 the Oxford Unit have gone from 15% of patients starting dialysis via an AVF to 68% by focussing attention on the pre dialysis patients. The overall prevalence of AVF use is in the haemodialysis population looked after by our Oxford colleagues, approximately 650 patients, is now 82% - well done! We also discussed approaches to crash landers, whether repeated in out femoral stab offered advantages over lines and when acute Tenckhoff catheter insertion should be performed.
It was fun to meet Alison and Chris again having worked with them on the Vascular Access Modernisation Initiative. The importance of a multidisciplinary team meeting for co-ordinating and problem solving was clear for all to see – do you have such a meeting every week or fortnight in your own unit? There is quite a lot of work in the cancer field that demonstrates the positive benefit of structured and mandated MDT meetings. So the cases gave us an opportunity to consider service design issues as well as pure clinical questions. In the same way, a regular MDT provides an opportunity to run and test quality improvement initiatives as well as co-ordinate individual care.
It is always enjoyable to go to Oxford and this trip was no exception (a view of Corpus Christi Quad from my room above). We don’t have that many opportunities to mix and meet with our European colleagues. If you get the opportunity I would recommend that you go to the next Oxford Ghent Summer School.
Tuesday, 11 September 2007
Q and A: Impact of eGFR on Specialist Kidney Referrals
Q: We are looking for data to back up concerns that we have regarding the effect that eGFR has had or will have on clinics in terms of inappropriate referrals and compounded by the 18 week target.
Is there any audit data available which could be shared and which we could take to our Development/Service Improvement Lead for the Trust. We would like to be able to show how the 18 week target and more specifically, the 3 week new appointment target which comes in next March will cause us some concern.
Julie Batterton, Associate Directorate Manager, Nephrology & Renal Transplant Directorates Royal Liverpool & Broadgreen University Hospital Trust, Prescot Street, Liverpool
A: Dear Julie , my consultant colleague passed on your request for audit info re the impact of eGFR on specialist kidney referrals.
In general terms, the introduction of eGFR reporting and of CKD in QOF has lead to a substantial increase in new referrals to renal services - some appropriate (ie in line with the well publisied RCP RCGP guideline), but many inappropriate. Also we need to bear in mind that this last year has been the first year - so a lot of prevalent cases have been uncovered . You would know how many by looking at your local PCT and practice CKD observed as expected prevalence in the QMAS data - well worth doing - it essentially shows where there is educational need in primary care.
Systems that have been operating eGFR for some time and have good referal pathways in place have seen a fallback in referrals to manageable numbers - the key is excluding (by education - look at the Derby website) as well as encouraging proforma referrals that don't all need a traditional OPD - ie establishing (commissioning) virtual clinics - they do need real time!!
Richard Fluck in Derby (who has an excellent system) and Kevin Harris in Leicester/East Midlands Renal Network each have good local audit data - Kevin over a diverse range of providers.
The main issue arising nationally is the need to have robust, coordinated advance CKD care (predialysis , supportive and palliative) that ensures adequate preparation and choice for people with CKD Stages 4 and 5 - small numbers (in comparison to Stage 3 the overwhelming majority of whom should get the greatest amount of care in the primary/community setting) . You would know how good comparatively your pre-dialysis care is by looking at the proxies of pre-emtive transplant listing/transplanting and percentage who start haemodialysis via an AVF - data in the Renal Registry.
Let me know if I can be of more help.
Is there any audit data available which could be shared and which we could take to our Development/Service Improvement Lead for the Trust. We would like to be able to show how the 18 week target and more specifically, the 3 week new appointment target which comes in next March will cause us some concern.
Julie Batterton, Associate Directorate Manager, Nephrology & Renal Transplant Directorates Royal Liverpool & Broadgreen University Hospital Trust, Prescot Street, Liverpool
A: Dear Julie , my consultant colleague passed on your request for audit info re the impact of eGFR on specialist kidney referrals.
In general terms, the introduction of eGFR reporting and of CKD in QOF has lead to a substantial increase in new referrals to renal services - some appropriate (ie in line with the well publisied RCP RCGP guideline), but many inappropriate. Also we need to bear in mind that this last year has been the first year - so a lot of prevalent cases have been uncovered . You would know how many by looking at your local PCT and practice CKD observed as expected prevalence in the QMAS data - well worth doing - it essentially shows where there is educational need in primary care.
Systems that have been operating eGFR for some time and have good referal pathways in place have seen a fallback in referrals to manageable numbers - the key is excluding (by education - look at the Derby website) as well as encouraging proforma referrals that don't all need a traditional OPD - ie establishing (commissioning) virtual clinics - they do need real time!!
Richard Fluck in Derby (who has an excellent system) and Kevin Harris in Leicester/East Midlands Renal Network each have good local audit data - Kevin over a diverse range of providers.
The main issue arising nationally is the need to have robust, coordinated advance CKD care (predialysis , supportive and palliative) that ensures adequate preparation and choice for people with CKD Stages 4 and 5 - small numbers (in comparison to Stage 3 the overwhelming majority of whom should get the greatest amount of care in the primary/community setting) . You would know how good comparatively your pre-dialysis care is by looking at the proxies of pre-emtive transplant listing/transplanting and percentage who start haemodialysis via an AVF - data in the Renal Registry.
Let me know if I can be of more help.
Wednesday, 29 August 2007
Gerry's last day
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A Belfast accent. A trilby at a jaunty angle. A jolly faced, well nourished, Irishman in a brown, large check suit, burgundy waistcoat - with gold chain and yellow paisley dickie-bow. That was my introduction to Gerry Lynch who today, 29 August, steps down from his post as policy lead for renal services. Gerry has been looking after our patch for the past 2 years - all those who have met or had dealings with Gerry have been struck by his quick mind, dedication to the needs of people with kidney disease and ability to negotiate the system.When I took up the National Clinical Director role, one of the other Tsars, Harry Cayton, National Director for Patient and the Public, took me to one side and said "whatever you do, don't let the civil servants control you". I had received similar advice from a different quarter but not put so eloquently - that person pointed out that civil servants were there to serve. But we are all of course here to serve - the question is who?
Working with Gerry has been a real pleasure. Not only his dress sense but mainly his common sense. He has acted as a minder and friend and saved me from making the naieve mistakes that can easily be made in a new and challenging environment. If Gerry has controlled me it has been in the gentlest way - he is a skillful behind the scenes negotiator. He is pleased, and I am beginning to learn, that if nothing appears to happen but the experience of people with kidney disease improves that's infinitely better than the razzamatazz of a new initiative every week, the illusion of progress and the situation on the front line not changing.
Gerry is returning to Belfast to take up a leading role in the Alliance Party - a historical time in Irish politics. One may wonder what time in Irish politics isn't historic, but seriously, what an opportunity for Gerry to make a difference. He will be behind the scenes so we won't see Gerry's smiling face between (was that a real smile) those of Martin McGuinness and Ian Paisley.
Gerry's skills and enthusiasm will be missed, by myself certainly, by the Renal and Vascular Team at the DH and, although everyone will not know it, by the wider renal community. I will be watching his progress and that of his Alliance Party, in much the same way that I now look out for the Sunderland scores. Although there are many differences Gerry does share the focus on sucess with the Sunderland manager. We wish him well - that's Gerry, not necessarily Roy!.
Thursday, 16 August 2007
Q & A Haemodialysis Capacity - ISTC?
Q: Dear Donal, I wonder whether you can provide me with some clarity regarding the state of play of securing ISTC procurement for the expansion of satellite haemodialysis facilities.
Over the last 10 years at St Helier we were able to develop 5 (6 in all as the last one replaced one of our old ones) satellite units through a mixture of Renal Modernisation monies, charitable funding and working in partnership with commercial providers. Up until now we were able to keep abreast with the needs but no longer!
We in SW London are about to hit another predicted dialysis capacity buffer iminently. I was going to consider drafting a tentative submission to the DH Commercial Directorate to see whether the ISTC route is one route I can pursue as all of the NHS organisations (Acute Trusts and PCTs) locally in SW London are in official turnaround with no spare capital in the system. Yesterday, I read in the press that Alan Johnson has reported to have said there will be no further waves of ISTC being introduced by the DH.
Before I start a wild goose chase, I wonder whether you can give me some clarity of the current situation. Your early response would be appreciated.
Dr Jonathan Kwan, Medical Lead for Renal Services, S W Thames Renal & Transplantation Unit
A: Dear Jonathan, thanks for the question. Capacity, unit and satellite haemodialysis capacity in particular remains a major concern of mine. At Hope Hospital people are being admitted and waiting months, not weeks, for regular dialysis slots!
I have recently written to Chief Executive Officers of the provider units in England emphasising that starting individuals on twice, rather than thrice weekly, regimes is not appropriate as it comprises patient safety. I am also awaiting details of the ten SHA renal strategy plans from our specialist commissioner colleagues so as to get a clearer national picture.
Several colleagues, well two to be precise, have mentioned that HD capacity is not a current issue - in one of these areas I know there are agreed plans for next three to five years already - ahead of 2008-2011 local delivery planning exercise! Aren't they ahead of the game!! The other colleague commented that their more pressing concern, at present, was organisation and funding of supportive and palliatitive care for those who elect for the no RRT option. I appreciate that they are probably the exception but it does demonstrate that 'we' can get planning for haemodialysis right - and when we do there will be other things that require our attention.
Turning directly to your question. Yes there has been a change in tone and emphasis since the new Prime Minister and Secretary of State came in to post. In short its not a 'wild goose chase' but its worth having some detailed discussions at this stage. I don't think there have been any specific comments on Renal Services, but we are of course part of the whole. The current projects will progress as planned. The E16 scheme - that includes renal facilities in Cheshire and Merseyside, South Yorkshire and Hull is now nearing financial close.
The recent comments made by the Secretary of State were in relation to centrally - driven procurements of independent sector capacity analogous that have been implemented until 2002. It remains possible for any NHS bodies to procure services from the independent sector and it may be possible for the Department of Health Commercial Directorate to work with renal networks to support them in the procurement of IS capacity. Such a procurement would be 'owned' locally but the commercial directorate at the Department of Health might be able to assist by bringing the knowledge accumulated during the recent haemodialysis procurement exercise.
I will arrange for you and the South West London network to discuss your local options more fully with our collagues in the Central Clinical Procurement Programme section of the Commercial Directorate. I would of course be happy to do the same for others who wish to explore the independent sector option.
Over the last 10 years at St Helier we were able to develop 5 (6 in all as the last one replaced one of our old ones) satellite units through a mixture of Renal Modernisation monies, charitable funding and working in partnership with commercial providers. Up until now we were able to keep abreast with the needs but no longer!
We in SW London are about to hit another predicted dialysis capacity buffer iminently. I was going to consider drafting a tentative submission to the DH Commercial Directorate to see whether the ISTC route is one route I can pursue as all of the NHS organisations (Acute Trusts and PCTs) locally in SW London are in official turnaround with no spare capital in the system. Yesterday, I read in the press that Alan Johnson has reported to have said there will be no further waves of ISTC being introduced by the DH.
Before I start a wild goose chase, I wonder whether you can give me some clarity of the current situation. Your early response would be appreciated.
Dr Jonathan Kwan, Medical Lead for Renal Services, S W Thames Renal & Transplantation Unit
A: Dear Jonathan, thanks for the question. Capacity, unit and satellite haemodialysis capacity in particular remains a major concern of mine. At Hope Hospital people are being admitted and waiting months, not weeks, for regular dialysis slots!
I have recently written to Chief Executive Officers of the provider units in England emphasising that starting individuals on twice, rather than thrice weekly, regimes is not appropriate as it comprises patient safety. I am also awaiting details of the ten SHA renal strategy plans from our specialist commissioner colleagues so as to get a clearer national picture.
Several colleagues, well two to be precise, have mentioned that HD capacity is not a current issue - in one of these areas I know there are agreed plans for next three to five years already - ahead of 2008-2011 local delivery planning exercise! Aren't they ahead of the game!! The other colleague commented that their more pressing concern, at present, was organisation and funding of supportive and palliatitive care for those who elect for the no RRT option. I appreciate that they are probably the exception but it does demonstrate that 'we' can get planning for haemodialysis right - and when we do there will be other things that require our attention.
Turning directly to your question. Yes there has been a change in tone and emphasis since the new Prime Minister and Secretary of State came in to post. In short its not a 'wild goose chase' but its worth having some detailed discussions at this stage. I don't think there have been any specific comments on Renal Services, but we are of course part of the whole. The current projects will progress as planned. The E16 scheme - that includes renal facilities in Cheshire and Merseyside, South Yorkshire and Hull is now nearing financial close.
The recent comments made by the Secretary of State were in relation to centrally - driven procurements of independent sector capacity analogous that have been implemented until 2002. It remains possible for any NHS bodies to procure services from the independent sector and it may be possible for the Department of Health Commercial Directorate to work with renal networks to support them in the procurement of IS capacity. Such a procurement would be 'owned' locally but the commercial directorate at the Department of Health might be able to assist by bringing the knowledge accumulated during the recent haemodialysis procurement exercise.
I will arrange for you and the South West London network to discuss your local options more fully with our collagues in the Central Clinical Procurement Programme section of the Commercial Directorate. I would of course be happy to do the same for others who wish to explore the independent sector option.
Friday, 10 August 2007
Holiday time
I will be taking a holiday in August so may be out of touch for a while. Rest assured I will be checking my "inbox" and back with updates soon!
Tuesday, 7 August 2007
In the Duty Room
I visited Chris Rudge, Managing Director of UK Transplant at the beginning of August to meet his team and hear about the progress of the Donor Organ Task Force. Every time I visit UKT I am struck by the setting - the offices are in a business park. They work perfectly well there - and unlike a clinical unit there is parking! The setting does however underline that UKT is a quintessential knowledge organisation. It could be anywhere. It's 4 key functions - maintaining the recipient waiting list, allocating organs by the nationally agreed schemes, promoting donation and maintaining the Organ Donor Register (ODR) - all require coordination of information and translation of that information into knowledge. Knowledge about which is the best match, correct allocation of a liver to a high priority recipient, telling a story - so that the technical information we regard as second nature becomes knowledge and understanding by the general public.
That message is getting across. In the foyer there is a large flat screen - when I was there it had a loop describing the various activities of UKT. The counter showed that over 14 million people have placed themselves on the ODR. A remarkable success - over 25% of the adult population of the UK. It's a great pity that this success hasn't lifted us off the bottom of the European donor league table. The Donor Organ Task Force aims to correct that. It was set up to advise on what can be achieved now, under the current legislation and with our current knowledge and expertise. It has always seemed pretty obvious to me that we need to put some resource into understanding how families make their decision to donate or refuse. Even without the research evidence it seems inescapable that the skills and attitudes of those initially raising the possibility of donation, the physical surroundings - it's not something to be broached in the corridor - and the time and space families are given to consider donation are key elements. I am sure the Task Force recommendations will advise on these issues and the wider organisational arrangements that will promote donation. Unfortunately, in many places it's not yet on the radar - how many Trusts have an Executive with responsibilies to support the donor families and the front line staff managing these processes?
I know 3 people/families who have donated the organs of their son or daughter - I can see one of them now in my mind's eye. In 2 of those situations the family took the lead in the donor discussions when the inevitable became obvious - would the opportunity for those families to donate have been lost if they hadn't have done? In all 3 families the act of donation brought some lasting comfort if not meaning to their tragedy.
Liam Donaldson's article "the waiting game" has opened the door to further discussions about changes in the law on assumed consent. I welcome that. On the day Sir Liam was on Radio 4, over 22000 people joined the ODR. Of course many people say surgeons will never take organs against the family's wishes and feel that past Parliamentary discussions have missed the point. But a public debate can only be a good thing - unless of course we, our ITU colleagues, the public and our Trusts delay what we should be doing today whilst we await the outcome of that debate.
The duty room, the operations room at UKT, did have a feel of an air traffic control room - assuming the movies protray that accurately. Coffee, no cigarettes, lots of screens, messages on post-its, the whiteboard with an SOS paediatric heart wait-listed infant and urgent potential liver recipients with their MELD scores, the nerve centre of this knowledge organisation. Very dramatic stuff for a kidney doctor who these days spends a lot of time in meetings. The staff at UKT are some of the unsung heroes of the Health Service. The guys in the duty room pointed out to me that the donor families are of course the real heroes.
So all that's very good and uplifting. If you are reading this and work in a kidney unit - or if you are a patient or relative of someone who might benefit from a kidney transplant, take a moment to look at some of your stats. The UKT Annual Report and the Renal Registry Report will make interesting reading. The information here in table form and above graph (data from Dr Richard Fluck, Consultant Nephrologist at Derby City Hospital), shows the variation in pre-emptive and live donor rates between units. Where does your unit stand? The question isn't "could you do better?" but "how do you do better?"- why does it take up to, or beyond 12 months to list dialysis patients for transplantation?
That message is getting across. In the foyer there is a large flat screen - when I was there it had a loop describing the various activities of UKT. The counter showed that over 14 million people have placed themselves on the ODR. A remarkable success - over 25% of the adult population of the UK. It's a great pity that this success hasn't lifted us off the bottom of the European donor league table. The Donor Organ Task Force aims to correct that. It was set up to advise on what can be achieved now, under the current legislation and with our current knowledge and expertise. It has always seemed pretty obvious to me that we need to put some resource into understanding how families make their decision to donate or refuse. Even without the research evidence it seems inescapable that the skills and attitudes of those initially raising the possibility of donation, the physical surroundings - it's not something to be broached in the corridor - and the time and space families are given to consider donation are key elements. I am sure the Task Force recommendations will advise on these issues and the wider organisational arrangements that will promote donation. Unfortunately, in many places it's not yet on the radar - how many Trusts have an Executive with responsibilies to support the donor families and the front line staff managing these processes?
I know 3 people/families who have donated the organs of their son or daughter - I can see one of them now in my mind's eye. In 2 of those situations the family took the lead in the donor discussions when the inevitable became obvious - would the opportunity for those families to donate have been lost if they hadn't have done? In all 3 families the act of donation brought some lasting comfort if not meaning to their tragedy.
Liam Donaldson's article "the waiting game" has opened the door to further discussions about changes in the law on assumed consent. I welcome that. On the day Sir Liam was on Radio 4, over 22000 people joined the ODR. Of course many people say surgeons will never take organs against the family's wishes and feel that past Parliamentary discussions have missed the point. But a public debate can only be a good thing - unless of course we, our ITU colleagues, the public and our Trusts delay what we should be doing today whilst we await the outcome of that debate.
The duty room, the operations room at UKT, did have a feel of an air traffic control room - assuming the movies protray that accurately. Coffee, no cigarettes, lots of screens, messages on post-its, the whiteboard with an SOS paediatric heart wait-listed infant and urgent potential liver recipients with their MELD scores, the nerve centre of this knowledge organisation. Very dramatic stuff for a kidney doctor who these days spends a lot of time in meetings. The staff at UKT are some of the unsung heroes of the Health Service. The guys in the duty room pointed out to me that the donor families are of course the real heroes.
So all that's very good and uplifting. If you are reading this and work in a kidney unit - or if you are a patient or relative of someone who might benefit from a kidney transplant, take a moment to look at some of your stats. The UKT Annual Report and the Renal Registry Report will make interesting reading. The information here in table form and above graph (data from Dr Richard Fluck, Consultant Nephrologist at Derby City Hospital), shows the variation in pre-emptive and live donor rates between units. Where does your unit stand? The question isn't "could you do better?" but "how do you do better?"- why does it take up to, or beyond 12 months to list dialysis patients for transplantation?
Wednesday, 1 August 2007
Q & A Funding from the Secretary of State to Reduce HCAI
Q: I have read the email you sent regarding the support from the Secretary of State to reduce HCAIs and the particular emphasis that is being put on vascular access and care of lines etc. We were visited by the Department of Health recently and have identified some areas in the Renal Unit where we would like to do some work around this. I wonder if you have any further information on how to gain funding to move some of our ideas forward and specifically what might be an area within this that would be considered appropriate?
July email reproduced here in part for reference:
Dear Clinical Directors
Re Funding to reduce HCAI
One of the first actions of the new Secretary of State was to announce further funding of £50M for HCAI – in particular to reduce MRSA. I have flagged the central role of vascular access in renal services related HCAI and if your Trust has been visited by the Cleaner Hospitals Team you will know that access, line care and protocols to fast track those starting haemodialysis without a fistula are part of the review. The central funding will be distributed by SHAs who will request proposals from Trusts. If your unit has HCAI concerns and have identified interventions that you require funds to introduce (ie enabling day case vascular access, vascular access coordinator posts, pharmacy costs for antibiotic locks, radiology sessions) then I strongly urge you to lobby your Directors of Nursing so that a case can be made to the SHA from your Trust for funding of these initiatives.
Richard Fluck, in Derby, has been helping me with the Renal HCAI projects and if you would like to discuss the matter further please contact myself or Richard.
Some further analysis of HES is available please contact me via email (address at foot of page) if you require copies. The activity rates by old SHA are striking – I am not sure that the wait time (displayed in pmp) is the best way to describe delays.
A: The funds will go to SHA level (£5M for each SHA) and Trusts will be asked to bid for money for projects to bring down their HCAIs. Your director of Nursing might be the best person to speak to about this. I hope this helps.
Monday, 30 July 2007
CMO focusses on the Kidney
You probably heard Liam Donaldson on Radio 4 or read about his comments on the waiting game. It's a good title for a chapter on organ transplantation. Clearly it is not just about the kidney but by drawing attention to the issue of organ and tissue donation, Sir Liam has provoked further debate and discussion - as a result, more famililes will get to know the views and wishes of their next of kin. Why our donation rates are the lowest in Europe, by a long way, is a cause for concern and action.
The Donor Task Force should be reporting soon and will have recommendations that all hospitals and ITUs w
ill need to take on board. But we don't need to wait for that, or restrict ourselves for those "must dos" - I know that many people put a lot of effort into the activities during National Transplant Week earlier in the month (left - photo of Donor Bus in Bolton manned by staff and patients from Hope Hospital, Salford - 506 sign-ups received on the day!) .
I have to say however that I was disappointed that there were only 2 or 3 people wearing the blue lapel ribbon at the Dialysis Summit that week - getting a kidney is a key concern for people on dialysis who are on the list, or are suitable but are not on the list! National Transplant Week did however increase web-based registrations on the OCR by 250% and during that week there were over 180 transplant related news stories in the press.
The Chief Medical Officer's report also drew attention to the healthcare associated infections and, whilst he didn't cite the fact that around 10% of MRSA cases occur in people on dialysis - usually associated with line sepsis, we all know that to be the case. You may have read earlier about the £50 million injection to re-double the efforts to reduce healthcare associated infection and MRSA in particular. I have written out to each of the clinical directors with details and with the hospital episodes statistics on access surgery. The comparison between the different regions and Trusts is fascinating. But we knew that to be the case from the recently published Renal Association - Kidney Research UK Vascular Access Audit. The Healthcare Commission and the Mandatory Enhanced Staphylococcal Surveillance (MESS) reporting will keep the spotlight on MRSA over the coming year. Also expect to see a lot more about Clostridium Difficile.
As well as the usual reading documents, Sir Liam Donaldson also produced a number of video podcasts on healthcare associated infection and organ transplantation.
Access the full report, chapters and video podcasts
The Donor Task Force should be reporting soon and will have recommendations that all hospitals and ITUs w
ill need to take on board. But we don't need to wait for that, or restrict ourselves for those "must dos" - I know that many people put a lot of effort into the activities during National Transplant Week earlier in the month (left - photo of Donor Bus in Bolton manned by staff and patients from Hope Hospital, Salford - 506 sign-ups received on the day!) .I have to say however that I was disappointed that there were only 2 or 3 people wearing the blue lapel ribbon at the Dialysis Summit that week - getting a kidney is a key concern for people on dialysis who are on the list, or are suitable but are not on the list! National Transplant Week did however increase web-based registrations on the OCR by 250% and during that week there were over 180 transplant related news stories in the press.
The Chief Medical Officer's report also drew attention to the healthcare associated infections and, whilst he didn't cite the fact that around 10% of MRSA cases occur in people on dialysis - usually associated with line sepsis, we all know that to be the case. You may have read earlier about the £50 million injection to re-double the efforts to reduce healthcare associated infection and MRSA in particular. I have written out to each of the clinical directors with details and with the hospital episodes statistics on access surgery. The comparison between the different regions and Trusts is fascinating. But we knew that to be the case from the recently published Renal Association - Kidney Research UK Vascular Access Audit. The Healthcare Commission and the Mandatory Enhanced Staphylococcal Surveillance (MESS) reporting will keep the spotlight on MRSA over the coming year. Also expect to see a lot more about Clostridium Difficile.
As well as the usual reading documents, Sir Liam Donaldson also produced a number of video podcasts on healthcare associated infection and organ transplantation.
Access the full report, chapters and video podcasts
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