Thursday, 23 December 2010

Transition arrangements for the NHS

This is a complex work in progress with different parts of the health and social care system moving at different rates. Shadow arrangements are being put in place in anticipation of Parliamentary approval of the Health and Social Care Bill that will be introduced next session. Pathfinders have been announced, consortia are forming, clustering arrangements are emerging and commissioning support units are being encouraged to set up as social enterprises or as joint ventures with private sector or civil society organisations.

This is perhaps the most significant and complex change agenda the NHS has ever faced, and of course the financial challenge remains, so there is much disquiet in the media, newspapers, clinical and managerial communities. There is also a considerable amount of confusion and maybe even dis-information so Sir David Nicholson’s letter Equity and Excellence: Liberating the NHS – Managing the Transition and the 2012 Operating Framework provides a helpful synopsis of where we are now, where we are going, how we will get there and includes a grounded call to remember that improving the quality of care is the core business of the NHS. You might want to read it alongside Michael Porter's recent New England Journal of Medicine article on What is Value in Healthcare?.

Both are well worth a read.

Monday, 20 December 2010

NHS Outcome Framework: highlights CKD but misses AKI

The NHS Outcomes Framework was published today (20 December 2010) and follows the format consulted on in July. Its aims are:

  • To provide a national level overview of how well the NHS is performing wherever possible in an international context;

  • To provide an accountability mechanism between the Secretary of State for Health and the NHS Commissioning Board;

  • To act as a catalyst for driving quality improvement and outcome measurement throughout the NHS by measuring a change in culture and behaviour, including a renewed focus on tackling inequalities in outcomes.

The level of ambition and the pace of expected improvement have not been sent for 2011/12 but although the targets have not yet been set and further work is needed on the majority of indicators have no fear, this will define the future direction of the NHS over the next few years. Integration across the separate public health outcomes framework and the adult social care outcomes framework will be required to deliver the NHS outcomes that matter to the public.

Chronic kidney disease is specifically mentioned in domains 1 and 2 – preventing people dying prematurely and enhancing the quality of life for people living with long term conditions and the graphic above explains how the outcome domains relate to the NICE quality standards, commissioning and payments.

Recovering from ill health, patients experience of care and safety are also highly relevant to CKD and AKI and of course, failure to mention them explicitly doesn’t mean that they are excluded. Indeed, safe prescribing, urgent and emergency care, end of life care, MRSA and urinary tract infection all figure prominently and all are relevant to kidney care.

Christmas message 2010

As 2010 draws to a close it is time to reflect on the last year, to say some thank-yous and to begin to set our priorities for 2011.

Before doing that it is worth remembering that our National Service Framework is approaching the 10th anniversary of its announcement in February 2001 by Alan Milburn, then Secretary of State for Health. The groundwork had been laid by the kidney community over the decade before which saw the publication of a Renal Services Specification, professional consensus on standards of care, agreed national audit measures and a voice given to patients and carers. Alan Milburn launched the process at the transplant summit held in the wake of the Alder Hey tissue retention scandal that provided the final political push for a national kidney strategy because of concerns about the scandal’s impact on organ donation. It seems a long time ago now – before the terms chronic kidney disease and acute kidney injury were in common parlance!

Fast forward; this year, quality has now moved centre-stage, from an organising principle of the NHS to the organising principle of the NHS by which we will always measure success; and 2010 was the year that Green Nephrology helped lever sustainability into the definition of quality healthcare. That’s care that is safe, timely, efficient, effective, equitable, patient centred and now also sustainable. It’s measurable, information is the new oil, and our Renal Registry, NHS Kidney Care and East Midlands Public Health Observatory continue to report on many aspects of care shining a light on where good practice is resulting in improved outcomes, challenging us where variation shows for instance inconsistent transplant listing by units or low chronic kidney disease registration in primary care and making us think about how services, patient experience and outcomes can be improved. The National Transport for Haemodialysis Audit will be reporting the 2010 census early next year. That, and easy, or should I say, enormously difficult, dialysis in the UK away from base unit remain the 2 big patient experience quality concerns for those receiving haemodialysis. How do we do better in these and other aspects of quality of life?

Part of the answer lies in improving choice. “No decisions about me without me”. Preparation and planning are essential for optimising outcomes in end stage renal disease. Support for conservative care, staffing to ensure live donor transplantation can occur pre-emptively and the nursing, technical and social care expertise needed for home dialysis programmes are all part of that planning. The new augmented tariff for multi-professional care is designed to help resource those choices. What became apparent from the NHS Kidney Care home dialysis roadshows was the importance of partnership, the role carers play in supporting patients and just how much better people feel when they are helped to take control of their own treatment. Read, listen and watch the stories at NHS Kidney Care. They are more powerful than any business case.

Prevention is better than cure. Control of blood pressure and treatment of proteinuria reduces vascular risk and can slow or even prevent end stage renal failure. Year on year early identification of kidney disease improves; there are now 2 million people on CKD registers. Despite exception reporting blood pressure control is better in these individuals and delayed referral has fallen; 2009/2010 was the first year proteinuria was a requirement of the CKD register in primary care and a remarkable 78% of people had a laboratory measure of proteinuria. Health Survey England have just released figures showing 6% of people have an eGFR below 60 mls/min/1.73m2 and that even more, 9% have a raised urine albumin excretion rate. So, with half the CKD population still to find, there’s no room for complacency in 2011.

Acute kidney injury (AKI) has again been highlighted as a major concern. “An Age Old Problem” the National Confidential Enquiry into Patient Outcome and Death (NCEPOD) into surgical deaths in the elderly found that 36% of the over 80s developed AKI during their admission and that overall only a third received good care. They concluded that post-operative AKI is avoidable in the elderly and should not occur. This echoes the picture described in “Adding Insult to Injury”. Recognising risk, such as those with CKD or proteinuria, early detection of kidney dysfunction and prompt attention to simple things that perhaps could be best described as good clinical care, will make the biggest difference to outcomes in this common condition. Working with colleagues in acute medicine, surgery and critical care is starting to bring such benefits as reported by the North London AKI Network.

We seem to be ending 2010 the same way we started it, with snow causing travel chaos. Drivers, carers, renal unit nurses and technicians are to be congratulated on the sometimes extraordinary efforts they make to keep haemodialysis services working safely and effectively. That really puts the rest of our frustrations with the transport infrastructure into perspective.

Many thanks to all those in the kidney community who have raised the bar to improve the health, experience and care of those with kidney disease this year – well done. Particular thanks to NHS Kidney Care, our improvement organisation and for those working in the kidney care networks – keep up the good work and a special mention to families and carers who work so hard, often without recognition.

Looking forward to 2011, there are going to be big changes to our health system. We are heading for the largest ever financial squeeze on the National Health Service and the NHS Bill is likely to provide legislative powers to carry through the move to GP led commissioning. There will be an intense focus on reducing unnecessary hospital based activity. Kidney services will not be spared this scrutiny. So as we set our personal, team and organisation goals for 2011 let’s keep those 7 dimensions of quality in our sights, remember quality is the only organising principle of the NHS and measure our successes against things that really matter to people with kidney disease.

Health Survey England confirms CKD is common and shines a light on proteinuria

Health Survey England, commissioned by NHS Kidney Care, included kidney disease as a special topic for the first time this year. It recognises CKD as a global health problem and the link with stroke and heart attack. On the face of it, the headline figure of 5% of men and 7% of women having stage 3-5 chronic kidney disease (Fig 3C) might not seem that interesting. These levels are what we might expect from previous epidemiological work. But Health Survey England is the first large community based study of CKD in the English general population and also provides the first comprehensive study of proteinuria which we now know affects 10% of men and 8% of women (Fig 3D). Overall, 14% of men and 13% of women were found to have reduced kidney function or proteinuria (Fig 3E).

Looking at the data from primary care we know that 4.3% of the adult population are on CKD registers. So the Health Survey England report that only 1.5% of men and 1.3% of women have been told by their doctor that they have kidney CKD means that only one third of those on CKD registers have been counselled or involved in their own CKD care.

Elsewhere in Health Survey England report, personal care plans have been enquired about. Overall, about 16% of those with long term conditions have a care plan. The majority of those have received their care plans in the last 12 months. Two thirds of those with a care plan participate actively in the management of their condition. Less then one third of those without a care plan are actively involved in self care.

Other worrying information from Health Survey England shows that hypertension affects 32% of men and 29% of women of whom 46% and 57% respectively are on treatment but only 26% of men and 32% of women with hypertension have controlled blood pressure!

It was however reassuring to find that all those with stage 4 and 5 CKD identified in Health Survey England were already diagnosed.

Thursday, 16 December 2010

Squaring the circle

The English health reforms present a range of challenges. Currently there is much more focus on improving quality while budgets are reducing and both Primary Care Trusts and Strategic Health Authorities are in transition to general practice lead commissioning. One of the other central planks of the coalition government’s proposals is to extend choice and competition and to reduce reliance on targets and performance management. These proposals are designed to put patients at the centre of the NHS and improve outcomes.

But alongside the emphasis on choice and competition there’s been increasing interest in integrated care. The belief is that more integrated care will achieve more personal, responsive care and better health outcomes for a local population. On the face of it, integration and any willing provider make strange bedfellows. Integrated care could act as a barrier to choice and competition if it were to entail establishment of organisations that become monopoly providers of care in their areas. Can this circle be squared? An alternative view to the monopoly provider argument is that integrated care organisations could be at the vanguard of the disruptive innovation needed to improve performance, especially if there is competition among integrated care organisations. Taking this view, there is no inherent contradiction between integration and competition provided that patients are able to exercise choice either within or between integrated care organisations.

Chris Ham and Natasha Curry from the Kings Fund make these points in “Clinical and Service Integration, the Route to Improved Outcomes” to emphasise the need for a more nuanced debate about the direction of reform that recognises the possibility of integration and competition both having a part to play in improving performance. To simulate that debate Natasha and Chris have drawn together the evidence on the performance of the integrated systems and the many ways in which integrated care can be achieved. They argue for greater clarity on the meaning of such terms as integration, integrated care and integrated care organisation. These terms are often used synonymously but have many different meanings. Clinical and service integration summarises the evidence for whole system approaches such as Kaiser Permanente in the USA, examples of chronic care models for particular groups of patients such as the elderly in Europe and North America or disease specific managed clinical networks in Germany, Sweden and the United Kingdom. Finally, they make the point that for the individual patient and to improve population outcomes, co-ordination of care is essential. They found that the adoption of multiple strategies to achieve this goal were more successful than those using single strategies alone. Concluding that improved communications between providers and the provision of support for patients maximises the chance of improving quality and outcomes.

What role might information on providers play in this drive to improve quality? Martin Marshall and Vin McLoughlin from the Health Foundation examined this question in a recent British Medical Journal analysis “How do patients use information on health providers?” BMJ 2010; 341: c5272. They cite the recent literature that shows the public want information about performance to be published but do not look at it and that it has had limited impact on improving quality. They argue that decision making in healthcare is more complex and at first sight less rational than, for instance, getting a good deal on your next car or holiday. They point to the various social processes in addition to the cognitive ones involved in how individuals make trade-offs to reach decisions. These might seem irrational to the outside observer but yet have strong internal logic. Data that is important to clinicians and commissioners is often perceived differently by patients.

So providing useful information to patients is much more of a challenge than we have traditionally thought. This is not a good reason not to include the relevance and accessibility of performance data or not to provide the information at all. On the contrary, as Martin and Vin state not only should it be seen as “a good thing on its own but may also start to engage a large number of people in the future”. We need to make information more appealing, to develop patients and the public’s health literacy and to be aware of the different health beliefs that exist in our population. Co-producing health with patients brings integration, competition and information together for the goals of improving both the health and the experience and outcomes of care.

Wednesday, 1 December 2010

Three national CQUIN goals for kidney care

The Commissioning of Quality and Innovation (CQUIN) payment framework established after the “Next Stage Review” conducted by Lord DArzi is supported by the coalition government indeed the current Secretary of State has gone so far as to state that “quality is the only organising principle of the NHS”. CQUINs are one way to achieve that goal.

A range of CQUIN exemplar goals that broadly align with the White Paper “Liberating the NHS” as well as with national Quality Innovation Productivity Prevention workstreams and the nursing high impact actions have been developed to provide well defined evidence based quality improvement goals that can be linked to provider payment through the CQUIN framework.

The renal CQIUNS cover acute kidney injury and home dialysis. The indicators of quality that have been chosen are:

  • Percentage of emergency admissions to have both 1. physiological scoring performed to identify patients at high risk of clinical deterioration (eg MEWS score) and 2. senior review (consultant or equivalent within 12 hours of admission).
  • Percentage of emergency admissions with a major risk factor for AKI to have both: 1. medication review and 2. serum creatinine re-checked within 24 hours of admission.
  • Percentage of patients requiring maintenance dialysis to be receiving home haemodialysis, peritoneal dialysis or assisted automated peritoneal dialysis.

These aren’t ‘must dos’. But they do provide a resource for commissioners, providers, clinicians and patients to draw on when agreeing local CQUIN schemes. Several of the other CQUIN exemplars are relevant to kidney care including those covering transport and care planning in long term conditions. A full set of exemplar CQUIN goals are available shortly from the NHS Institute website (pages 37-39).

As ever, I would be interested in any feedback on their use, how they have been modified locally and views on their impact.

Monday, 29 November 2010

NHS Atlas of Variation

The NHS Atlas of Variation in healthcare was published last Thursday to co-incide with the NHS Medical Directors’ Conference. It contains a series of maps of variation of activity, expenditure, quality, outcome, value and equity to stimulate the NHS to tackle the causes and drivers of that variation.

“If all variation were bad, solutions would be easy. The difficulty is in reducing the bad variation, which reflects the limits of professional knowledge and failures in its application, whilst preserving a good variation that makes care patient centred. When we fail, we provide service to patients who don’t need or wouldn’t choose them while we withhold the same services from people who do or would, generally making far more costly errors of overuse than of under use”.
Mulley, AJ. Improving productivity in the NHS. BMJ 2010. 341:c3965
doi: 10.1136/bmj.c3965 (Published 27 July 2010)
However unwarranted variation is cause for concern and the Atlas brings together a range of topics including chronic kidney disease (see map 24 on page 72/3 ) where it is clear that the variation cannot be explained by differences in the population served. The Atlas also provides links to several web-based analysis tools and resources for analysing health investment that can provide a good understanding of relative expenditure, health outcomes and drivers of spend at a fairly detailed level for local populations.

Wednesday, 17 November 2010

GPs recognise the importance of proteinuria

A requirement to quantify proteinuria preferably by a urine albumin creatinine ratio was added to the Chronic Kidney Disease domain of the QoF in April 2009. The first year results are just out and they show that 78% of those on primary care CKD registers have had proteinuria recorded in the last year.

This is a remarkable achievement – well done primary care. Given the importance of proteinuria as a modifiable risk factor for progressive kidney disease, acute kidney injury and vascular events this will identify those with CKD at highest risk.

Related blog:
Growth Rate slows to single figures

Tuesday, 16 November 2010

RRT - demand on the move

Baxter Health have made available a simple model designed for providers and commissioners to work out the cost implications of changing dialysis mix. The capacity planning tool is available by download for both Blackberry and iPhone.

Change in demand for renal replacement therapy is an input so it should work well with national modelling tools which don’t currently model costs at the same level of detail. It is not sensitive to changes in the proportion of transplant patients which is an important dynamic – hopefully that will be picked up at the next upgrade.

Download for iPhone (or search for “Baxter” at the iTunes store)

Patient activation, staff morale and outcomes

Good kidney care has always been based on teamwork. The complexity of renal failure, the wide range of treatment options – from an ABO incompatible live donor transplant or daily dialysis to conservative care requires detailed knowledge, precision and technical skills. The impact on physiology, diet, psychological wellbeing and social functioning brings added dimensions to kidney care. Achieving optimal outcomes and improving patients’ experience of care depends on the whole range of skilled and motivated individuals needed to manage different aspects of kidney care; but it also needs individual practitioners to work together and with patients as a multiprofessional team. No one group, single practice or characteristic can make a major difference on its own. A holistic approach including attention to supporting patients, staff working climate, inter-professional respect and integrated practices are required to provide holistic care.

A recent paper from the USA (Dialysis Practices that Distinguish Facilities with Below – versus Above-Expected Mortality by Brennan, Spiegel and colleagues Clin J Am Soc Nephrol 5: 2010. doi: 10.2215/CJN.01620210). Found that dialysis units with below expected mortality reported that patients in their units were more activated and engaged, physician communication and inter-personal relationships were stronger, dietitians were more resourceful and knowledgable, and overall coordination and staff management were superior when compared with units with above expected, worse, mortality. Staff rating of these practices explained 31% of the variance in mortality in the kidney units studied.

It would appear that dialysis staff know if their unit is performing well. I bet patients would also be able to tell us what works well and what needs to be improved. When patients are more willing to learn, independent and engaged, survival is better. This suggests that measuring patient activation scores might provide ideas for potential interventions that increase motivation, personalise care and participation in decision making. The “patient activation model” shows that patients who are informed and actively participate in their healthcare have better outcomes than patients who are inadequately informed, unmotivated or passive.

It was interesting that Spiegel and colleagues found that inter-personal relationships and communication, willingness to spend time with the dialysis staff and frequent and timely multi-disciplinary care conferences, particularly when patients had recently been discharged from hospital, were highly predictive of good outcomes whereas physicians’ technical skills or knowledge were not predictive at all.

Top performing facilities were more staff orientated and had friendlier environments, had better management and higher quality continuing education programmes than the units with worse outcomes.

We have always believed that multiprofessional team working is the key to good outcomes in kidney care, now we have evidence to support that belief. The paper also provides some insights and methodologies we could apply in the UK to understand patient activation, staff morale and team working better so that we could learn from the best and improve patient experience and survival.

Thursday, 11 November 2010

An age old problem

The National Confidential Enquiry into Patient Outcome and Death (NCEPOD) report on “Elective & Emergency Surgery in the Elderly: An Age Old Problem (2010)” was published this morning and widely reported in the media.

It asks the question “how good is care in the elderly who undergo surgery?”; only a third of the over 80s receive good care!!

Frailty, poor nutrition and memory impairment are frequently missed. Co-morbidity in polypharmacy are common. Unnecessary delays occur. Pain is poorly managed. Access to higher levels of care is under utilised. No consultant review between admission and surgery was found in the notes of almost 50% of patients.

Shocking! But it also sounds familiar to those who have read Acute Kidney Injury: Adding Insult to Injury.

What about acute kidney injury in the elderly surgical patient? Common; 36% developed AKI during admission. Harmful; all these patients died. Treatable; 50% had no record of pre-operative hydration status; 40% had no record of urine output pre-operatively. Only 63% had intra-operative fluid input recorded.

“Post operative AKI was related to poor intra-operative management of fluids and cardiovascular status and was compounded by deficiencies in post-operative management”.

Post-operative AKI is avoidable in the elderly and should not occur. There is a need for continuous post graduate education of physicians, surgeons and anaesthetists around the measurement of risk factors for the development of AKI in the elderly surgical patient.

There should be clear strategies for the management of intra-operative low blood pressure in the elderly to avoid cardiac and renal complications.

When to start? No better time than patient safety week, 15-21 November 2010. Take a look; one of the major aims of the week this year is to improve hydration for hospital inpatients. Patient Safety First’s cause “make the safety of patients everyone’s highest priority” and aim “no avoidable death and no avoidable harm”.

A cause and aim to which we should all strive.

NCEPOD Press Release 11 November 2010

Tuesday, 2 November 2010

Q & A: Our son has kidney disease, what should we do?

Q: Our son is a 30 year living and working away from home. He had a diseased kidney removed 20 years ago. At that time we were told that his remaining kidney was fine and that it was working at 75% capacity.

He recently dropped a bombshell on us by telling us that this kidney was now functioning at only 28% and that he has been suffering with recurring bouts of gout in his big toes for which his GP has prescribed Codeine to ease the pain. He has also been told that he need not worry about sticking to his diet any more.

We don't know how much he is not telling us and we certainly don't want to be seen as treating him as though he is still a child, but as parents we need to gain some understanding of how and when our son will be referred back into the renal care system, what his treatment might be and what we as a family can do to help him.

I am sure our situation is one that is being mirrored by many families in the UK. What in your opinion would be our best way forward.

A: Thank you for the question. Kidney disease affects individuals and families. As parents I am sure you are working hard to balance the independence and autonomy of your adult son with your natural concerns about the future. Having children of a similar age myself I hope I am permitted to say “your children remain your children”; they and your son might retort “parents never change”.

The gout your son has now developed is probably unrelated to the underlying kidney problem despite the fact kidney disease is linked to increased levels of urate. Precipitation of urate in the joint space, usually of the big toe, causes the attacks of gout and higher levels of urate increase the risk of an attack. Although urate levels rise as kidney function falls, gout itself is an unusual complication of chronic kidney disease. Rarely urate, which is excreted by the kidney, can crystallise in the urine and form kidney stones and there are some very unusual conditions where urate kidney stone disease is the main cause of kidney failure. They are uncommon and it is unlikely in your son. Much more of a worry when gout occurs in people with kidney disease is the risk that some of the medicines for gout can transiently or permanently reduce kidney function further. This is a particular risk when non-steroidal anti-inflammatory drugs, known as NSAIDS are used for protracted periods of time. Indomethicin, Ibuprofen and Voltarol are examples of NSAIDS. Some NSAIDS are available over the counter from high street pharmacists or supermarkets. People with kidney disease should always be careful about what medicines they take – both prescribed and over the counter. Codeine is a simple painkiller and doesn’t cause kidney damage but can accumulate when kidney function is very low. If the attacks of gout are frequent, a drug call Allopurinol can help prevent them. The dose does need to be reduced in chronic kidney disease and it is a drug that can interact with other medicines, so for instance, it shouldn’t be used with Azathioprine.

What was the cause of the damage to the kidney your son had removed aged 10? I am sure if it was cancer you would have said. Other reasons for removing a kidney are recurrent infection or severe scarring due to childhood reflux. The cause of the damage to that kidney and the reason for removing it might be very relevant to your son’s current situation. If for instance the cause of the damage was reflux and the reason for removal was control of blood pressure then avoidance and treatment of infections in the remaining kidney and management of hypertension would be key goals.

From what you say it sounds like your son’s remaining kidney wasn’t normal when the damaged kidney was removed. That would definitely be the case if it was only working 75% of what one would expect of a normal kidney. Indeed, in children and young people, if one kidney is damaged or removed, the other often grows to compensate and can do the work of one and a half kidneys. That also often happens after someone donates a kidney for transplantation.

On balance it seems likely that your son’s remaining kidney was already damaged by the time he was 10 years old. It is very likely that the current kidney function of 28% means your son’s estimated Glomerular Filtration Rate (eGFR – the measure of both kidneys function) is 28 mils per minute. Normally each kidney would provide 50 mils per minute. So one could think of your son’s single remaining kidney function of being 56% (or 28/50 x 2) of that expected by a single normal kidney. Even so, an estimated GFR of 28 mils per minute is low. It is Stage 4 kidney disease. There is a high risk of raised blood pressure and a definite risk of further progressive kidney damage. The strongest predictors of that risk are blood pressure, rate of change of kidney function over the last few years and the level of protein in the urine. If there is no protein in the urine or it’s very low then the chance of the future need for transplantation or dialysis is much less than if there is a lot of protein in the urine.

At this stage of kidney disease regular checks of kidney function, blood pressure and urine for protein are needed to optimise care. Blood pressure should be perfect, protein in the urine should be minimised by the use of ACE inhibitor drugs and any vascular risk factors – smoking, lack of exercise, obesity should be addressed. With an estimated GFR of 28 mils per minute other complications of kidney disease should also be monitored – anaemia, bone mineral disorders and acidosis. Some but not all people with this level of kidney function do need to try and change their diet but that needs to be determined on an individual case by case basis.

Why don’t you suggest your son has a look at NHS Choices to find out more about gout and kidney disease so that he can play a full part in reducing his future risks and managing his conditions. If you have a look as well it might help the discussions within the family.

Published in Kidney Life magazine in 2010

Monday, 1 November 2010

Q & A: Transplant chances

Q: I am a fifty year old man of Indian origin and have been on dialysis at the local hospital for 5 years. I am doing well but would like to have more control over my lifestyle. I am on the transplant list. My close family members have offered their kidney to me but none has been suitable because of health reasons related to the potential donors. I have been told that my chances of getting a suitable transplant are very low because of my ethnic background. I have heard that there has been a huge increase in the registration for kidney donors over the last few months. However, I am not sure how this will affect my chances. I would be most grateful for your advice.

A: Thank you for this interesting question that raises a number of important issues. I am pleased to learn that you are doing well but also fully appreciate the restrictions that hospital based haemodialysis places on such things as your diet and fluid intake, the ability to tailor the dialysis prescription to your own individual needs and of course flexibility for travel, work and family pursuits.

Home dialysis can give you far more control over the management of your kidney problems and dialysis regime than is possible in a hospital setting. The effects of transferring from hospital to home dialysis on lifestyle options, feelings of wellbeing and objective measures of kidney health can be dramatic. The patient stories speak for themselves. I see that you will have started dialysis in 2004 or 2005, around the time the National Service Framework for Renal Services was published. Standard 2 of the Framework gave individuals approaching end stage renal failure the right to receive timely preparation for renal replacement therapy so the complications and progression of their disease are minimised and their choice of clinically appropriate treatment maximised. One of the key recommendations was that patients are put onto the national transplant list within 6 months of their anticipated dialysis start date.
There are two biological barriers to successful organ transplantation. Firstly, as is the case for blood transfusion, the donor must be ABO blood group compatible with the recipient. Waiting time reflects the proportion of patients and donors with each blood group. About half of the patients on the national kidney transplant waiting list are blood group O. We know that blood group O patients wait slightly longer for a transplant than group A or AB patients but not as long as group B patients. Approximately 15% of patients on the list but only 10% of donors are blood group B so those patients wait the longest.

Secondly, it is essential to be sure that the recipient does not have antibodies directed against the donor’s HLA antigens (tissue type). If these antibodies were present at the time of transplant they would cause immediate and untreatable rejection. Someone may produce antibodies to HLA antigens if their immune cells have been exposed to another person’s tissue type that is different from their own. That can happen during pregnancy because the baby will inherit some of dad’s tissue type, following blood transfusion and previous transplantation. It will be easier to find a donor for a patient with no antibodies than for someone with antibodies and so if you have antibodies to HLA then you will wait longer for a transplant.

Having ensured that a recipient has no ABO or HLA antibodies directed against the donor the next stage of the national allocation process is to minimise the HLA (tissue type) mismatches between donor and recipient. Although HLA mismatching does not prevent successful transplantation, it is well established that HLA mismatched transplants are more likely to fail in the long term than those that are matched.

A recent study of the patients awaiting a kidney transplant in the UK between 1998 and 2005 demonstrated an imbalance between different ethnic groups in relation to their representation on the kidney transplant list, in the donor population and in the population of kidney transplant recipients. The data showed that 92% of the UK population was white, as was 77% of the kidney transplant list, 97% of the donor population and 88% of the transplants. In contrast, 6% of the UK population was Asian or black whereas they comprised 13% of the transplant list; this reflects the increased incidence of renal disease in these ethnic groups; 2% of the organ donors and 12% of the transplants were Asian or black. As mentioned above, waiting time for a transplant is influenced by ABO blood group. The average waiting time for a transplant for blood group O, A, B and AB recipients was 864, 569, 1360, 528 days respectively. Blood group B patients therefore wait by far the longest for a compatible donor. Only 10% of white patients compared with 24% of black patients and 38% of Asian patients are blood group B. As a consequence of genetic variability between individuals, there are many different tissue types. Some are more common than others and in addition there is variation between ethnic groups as to the most frequently occurring tissue types. This means that patients with rarer tissue types can wait longer for a matched donor and this is more likely to be the case when donors are predominantly from one ethnic group and the patient is from another.

Therefore the two biological factors, blood group and tissue type, underly the longer wait for a transplant experienced by Asian as compared with white patients. In the study described above. Asian patients waited on average 1849 days whereas the average wait for white patients was 1133 days. In 2003 a Task Force was set up to review the 1998 National Kidney Allocation Scheme. One aim was to help patients who had waited a very long time to receive transplants by giving them greater priority. Another aim was to resolve some of the apparent inequalities in access to transplantation resulting from biological differences whilst maintaining good transplant survival. A revised National Kidney Allocation Scheme was introduce in April 2006. The scheme prioritises patients with ideal tissue matches (000 HLA mismatches) and then assigns points to patients based on the level of tissue match between donor and recipient, the length of time spent waiting for a transplant, age of the recipient (with a progressive reduction in points given after the age of 30) and location points such that patients geographically close to the retrieval centre receive more points. The patients with the highest number of points for a particular pair of kidneys are offered these kidneys, no matter where in the UK they receive their treatment. There is careful monitoring to ensure that the scheme fulfils the objectives of improving equity of access to renal transplantation.

As a blood group O donor is also compatible with a blood group B patient, the 2006 scheme allows, under certain circumstances, a group O donor kidney to go to a group B patient so that they do not wait so long. Also, rare tissue types can now be considered matched with similar, more common tissue types so that patients with rare tissue types should not wait as long. Since the scheme was introduced the proportion of patients on the list waiting over 5 years has dropped from 17 to 8%. The average waiting time for Asian patients in the most recent analysis had fallen to 1511 days. It is important to remember that transplantation cannot occur without organ donation and a crucial aspect of improving access to transplantation is to increase the number of organ donors. Following the publication of the Organs for Transplant Report in 2008 we are working hard to increase the number of people signed up to the Organ Donor Register. A publicity campaign was launched in November 2009 that has already increased the number registered and the next phase of the campaign will be targeted at ethnic minority communities with the aim of increasing donation from those groups. Renal Patient View enables individual patients to track their status on the transplant list. NHS Blood and Transplant updates the status every day so it’s a good way for patients to keep in touch about all aspects of their kidney disease and its treatment. Renal Patient View signposts a number of high quality sites that explain issues of transplantation in more detail. I would also strongly encourage you and similar patients to discuss their individual options and concerns with regard to home dialysis, potential living donors from non family members or previously excluded family members because of blood group or tissue typing compatibility and some of the newer strategies to increase the chance of transplantation with your local kidney and transplant teams.

In summary, without knowing the details of your case, your above average wait for a transplant is probably a consequence of the biological characteristics that are used in organ allocation. The national scheme for kidney allocation is under constant review and was revised in 2006 in order to remove some of the apparent inequalities. In addition, considerable efforts are being made to increase the number of organ donors for the benefit of all those awaiting a transplant. I hope that in 2010 you have been able to tailor your dialysis to your individual needs and priorities and reconsider live donation, perhaps from ABO or HLA “incompatible” individuals or be fortunate enough to receive a call “out of the blue” asking you to come into the transplant centre for a non heart beating donor kidney transplant. Early in 2010 the campaign to increase donation was focused on Asian and black communities and if successful, this initiative should help to improve your chance of an offer.

Published in Kidney Life magazine in 2010

Information is the new oil – have your say on what’s collected and how it’s used

The new health information strategy was published for comment on 18 October. “An Information Revolution” is a grand title but it’s not rocket science below the lid (the word “cloud” doesn’t appear at all). If we did do all the things in the strategy, and most are simple and really do-able, it would provide the basis for revolutionising care and bringing health systems into the 21st century.

There is a focus on patients using information to actively participate and be in control of their care. Renal Patient View is cited as an example for others to follow. Many will welcome the move away from the desire for the same approach to be taken in every NHS organisation to the need for all systems in whichever NHS organisation they are to be able to talk to one another.

Clinical audit, a focus on outcomes and patient experience – all central aspects of “Equity and Excellence Liberating the NHS”, the coalition Government’s White Paper on health all need high quality information. I recall thinking when the phrase “right person in the right place at the right time” began to be used first “and what about information?”. I was thinking about clinical notes, which many of us recall being in a different place to the patient and the doctor! But the thought works equally well for information about quality.

People say “knowledge is power”, I would add “but only if you share it”. One of the principle reasons the kidney world got a national strategy, the Renal National Service Framework, was the fact that the kidney community had set clear clinical standards and used data routinely collected for direct patient care to do high quality clinical audit across the whole UK. The Renal Registry is the bedrock upon which our understanding of kidney services is based.

Information is the new oil, a catchphrase I heard recently, meaning information is a much under-used resource; it’s certainly true in healthcare. We are data-rich but often don’t refine crude data into information to produce knowledge and understanding. One could go further and say it’s the new soil – it helps ideas grow.

The year on year comparisons of trends encourages individual kidney units to measure the impact of your quality improvement initiatives. Comparison between units and networks raises important questions. I for one always look to see where Salford Royal Hospital is ranked but it’s not about league tables – you can’t directly compare Salford with Newry; but we did notice they did very well and did pick their brains and pinched their ideas for our dialysis quality improvement project. Variation between units in peritoneal dialysis rates, access to the transplant list and the rates of unplanned dialysis starts provide a powerful stimulus to examine and share practice. Thoughts that began from looking at the data leading to conversations with colleagues who apparently “are going better” have often been the start point for significant improvements in the care of people on renal replacement therapy. The next annual report of the Renal Registry will be out soon – do use it to ask questions and to generate improvement ideas for 2011.
Kidney disease is of course much wider than renal replacement therapy. We need ways to gather the information and understand where we can make improvements for people with advanced kidney disease, stage 4 and 5, and those who choose the conservative kidney care or no dialysis option. Patient related income measures (PROMs) may have a big role in defining quality in such patients. We need to know more about what type and how much inpatient care our patients need, what’s responsible for the variation in complication rates and what aspects of team culture and social care factors affect outcomes. The joining up of information, intra-operability, should help examine these factors better.

Information of course isn’t just for healthcare professionals and managers. Patients want to know what kind of services we offer and how we compare. Patients are the most powerful agents for both common sense and change for improvements sake. They are pretty good at spotting change for churn’s sake; but we do need to be even better at giving patients and the public information in the way they want and can use. Clinic letters to patients can be really helpful or they can be full of jargon. Health literacy varies across our population. Learning styles differ. Approach to risk and cultural beliefs about health, medicine and illness vary. These factors may make a big difference to people’s experience and outcomes. It is an area fertile for research. Have a look and comment on the information revolution.

Wednesday, 27 October 2010

Growth rate slows to single figures

The rate of increase in recorded prevalence of Chronic Kidney Disease (CKD) has fallen below 10 percent in the UK for the first time since the introduction of CKD registers across primary care as part of the Quality and Outcomes Framework, the pay for performance scheme for General Practice, in 2006.
Figures released from the Information Centre last week showed that 1,817,871 in England, that’s 4.3% of the adult population, are now identified and registered as having CKD. This is an increase of 78,428 people since last year or a 5% increase overall in the diagnosed prevalence of CKD.

Detection and recording of CKD remain lower in London at just over 2% compared to the other regions in the country.

As in previous years the PCT and practice level information revealed most about the local organisation of care. For instance, in the North East, in Newcastle, the all age prevalence is over 5.5% compared to about 2.8% in South Tyneside: and in the North West, Blackpool and North Lancashire again stand out as examples of good practice but for instance Bolton and Liverpool have made steady progress from their low 2006 baselines. Milton Keynes is still coming in low at 1.5%. When one considers that the true prevalence is probably somewhere between 6.5 and 8.5 % - that’s a lot of missing people at risk of Stroke, Heart attack and Kidney Failure!!

Have a look at/download your own local data from the Information Centre.

Tuesday, 26 October 2010

Q & A: Minimising long term complications, mental and physical

Q: As the number of dialysis patients increases year on year with some patients now dialysing for many years, what plans are afoot to tackle the resulting complications both physical and mental.

A: Thank you for raising the issue of the health and mental wellbeing of people on dialysis. You are quite right about the numbers of people on dialysis continuing to rise year on year. Most people on dialysis are not currently transplant listed and they will therefore be on long term dialysis for the rest of their lives. Such patients often have a number of additional medical problems over and above the fact that their kidneys have failed. Indeed, co-existing heart disease or blood vessel disease is often the reason individuals are deemed unsuitable for transplantation.

The quality of life for people on dialysis is influenced by a range of factors including physical health, mental wellbeing, dietary and fluid restrictions, psycho-social issues, transport and the ability to dialyse away from their base unit or home. The Renal National Service Framework describes a vision for the empowerment, support, care and treatment of children, young people and adults with kidney disease to optimise patient experience and outcomes. It has a set of standards, quality indicators and good practice markers that must be achieved to make world class kidney care a reality.

For people on dialysis, the experience often is the outcome and if we are to optimise patient experience and outcomes, attention to all the needs of those with advanced kidney disease should start long before dialysis is required. The year before renal replacement therapy is likely to be needed is a crucial time to address medical, both physical and mental, psychological and social issues so that the transplant, dialysis and conservative care options can be fully explored and informed choices can be made. This should take into account individual decision making styles and peoples preferences , needs, desires and lifestyles as well as their physical, mental, psychological and social situation. Shared decision making is the way in which the multi-disciplinary kidney care team communicates to the patient personalised information about the options, outcomes, probabilities and scientific uncertainties of the various treatments and the patient communicates his or her values and relative importance he or she places on the potential benefits and harms. Shared decision making is a fundamental part of care planning and promotes the best choice in what otherwise can be a complex and overwhelming situation. Every kidney patient is entitled to receive care planning and have their own individual care plan addressing all these needs.

But not everybody who needs dialysis receives this multiprofessional preparation and choice to acheive the best outcome for their own wishes and circumstances. We have however seen substantial improvements over the last 5 years. The number of people with end stage kidney disease arriving at kidney units requiring immediate emergency dialysis has fallen by about a third since the introduction of strategies to identify kidney disease earlier by the NSF. Those that do arrive without adequate preparation should receive intensive input from the renal team so they too have an opportunity to choose the type of dialysis, consider transplantation or , where appropriate, choose conservative kidney care. Timing of such discussions when patients have been very unwell can be tricky and I think that we can do better both in identifying more people early so fewer “crash land” and also in ensuring that sufficient attention is paid to consideration of benefits and risks of different choices made by patients when they start dialysis in this unplanned way.

People who are on dialysis come in all shapes and sizes – some are young, some are old, some what the freedom of managing their own condition at home, others require the support of the kidney team to optimise care so the care plan has to be personalised – we will fail if it’s a tick-box exercise. We do, however, know what complications to expect and both patients and staff need to be looking out for the early warning signs so the complications of dialysis can be minimised. For those on haemodialysis, having an arterial venous fistula is the key to good outcomes and reduced complications including infections and vascular events which are major medical problems for people receiving dialysis. There have been significant improvements in vascular access over the past 5 years as evidenced as by a reduction in more than half of the number of MRSA blood stream infections now seen. There Is still big variability between units and the targets set by the Renal Association have not been achieved in most units yet; the fact that in some units 95% of people receive dialysis use a fistula is very encouraging, it means that units where only 65% of people have a fistula, or worse still only 50%, can do considerably better. One of the national Kidney Care Audits that I am sponsoring focuses on vascular access with the aim of being able to regularly measure this quality marker and achieve year on year improvement in every kidney unit.

One of the many challenges in kidney care is that most things are not as clear cut as the need for good vascular access for long term wellbeing for people on haemodialysis. The evidence base for clinical practice in dialysis is much less than in many other conditions such as heart disease or cancer because historically there hasn’t been as much research in kidney care as other areas. However, Kidney Research UK, the Renal Association and the British Renal Society are starting to plug that evidence gap. We can also draw parallels from other areas, particularly heart disease and until proven otherwise, it makes sense that people on dialysis, because they have such high rates of heart disease, should receive the same sort of treatments as people without kidney disease who have had heart attacks where we have much more research and know more clearly what should be done.

There can be no health without mental health. This has been a neglected area in kidney care. We know that up to 30% of people on dialysis will experience a period depression. Being on dialysis is often a psychological as well as a physical strain for families as well as patients. R ecent guidelines on the identification and treatment of depression in people who already have an established physical illness has recently been produced by the National Institute for Health and Clinical Excellence (NICE), these guidelines are very relevant to kidney services. There are now good tools to screen for depression in the pre-dialysis and dialysis population and there are pharmacological, behavioural and cognitive treatments that can help alleviate depression in people receiving dialysis. This should not be neglected.

The social and psychological support workforce play a fundamental role in renal care helping patients and carers address the practical, economic, social and psychological problems associated with chronic disease, disability and eventually death and bereavement. It is a concern that social workers and psychologists are in such short supply on dialysis units. The Renal Special Interest Group of the British Association of Social Work carried out a study of renal social work provision in 2007 and disappointingly found that the number of renal social workers had fallen by 11% since 2002. The Kidney Alliance has also highlighted that social work appears to be one of the most severely under-resourced areas of renal services, with staffing at levels falling far short of those required to provide an adequate service. Yet some places are successfully addressing this problem. In 2008 Wirral University Teaching Hospital analysed the requirements for their patients. Their review found that anxiety and depression were common and with the support of the Hospital Trust the team have now employed a full time psychologist and are training members of the nursing staff in counselling. It’s a false economy not to treat depression, not to provide psychologist support for people with advanced kidney disease and not to address the social care needs of those on dialysis. Mental illness, psychological distress and unresolved social care issues result in an increased need for hospital admissions and much longer lengths of stay than in people who have these needs well supported, Unnecessary admissions and long length of stay waste money that could be used in improving the quality of care for people with kidney disease.

So, in summary, progress has been made in some areas but there’s much to be done – particularly in terms of mental wellbeing, psychological and social care. That is the reason that care planning remains high on the agenda of NHS Kidney Care and why we are support a move to a chronic disease management model of care where the patient is at the centre, where education, empowerment and encouragement for the patient on dialysis are given as much importance as some of the physical measurements we make to assess quality , and where care is delivered in a true partnership with the patient. There is good data to show that the more a person is involved in their own treatment decisions and management plans, the better the outcomes.

Published in Kidney Life magazine 2010

Q & A: Improving Choice

Q: Whilst many patients at my unit would not want to Dialyze at home, there are many who would like the freedom that this could give them. Is there any chance of persuading Nephrologists, and those who hold the purse strings to give us this choice ?'

A: Thank you for the question. Self Care dialysis offers many advantages for both patients and carers whether that is at home or in hospital. In my experience most if not all patients are willing to understake some level of self management, whether that be taking their own blood pressure, tracking their weight post dialysis or dialysising in the comfort of their own home. I think we need to open healthcare professionals, patients and carers minds to the opportunities self care dialysis can give rather than start with the assumption that dialysis should be hospital based. Evidence increasingly demonstrates the benefits of self care over paternalistic care. Each type of dialysis and the environment within which is takes place has advantages and disadvantages, dialysis at home for example offers freedom and flexibility whilst removing the need for 6 journeys a week to and from the hospital.

People receiving home haemodialysis can tailor their treatment schedule to suit their needs and establish a regimen that “works for them”. Paradoxically, home dialysis for say two hours, five times per week – a total of ten hours per week, provides much better control of symptoms and chemistry than traditional thrice weekly dialysis four hours each run. That’s because fluid removal can be balanced against that day’s intake and the impurities in the bloodstream that the normal kidney excretes are mainly removed in the first hour or hour and a half of dialysis. Slow, long overnight dialysis is another option, which can result in improved blood pressure control without the need for tablets. Many people on home haemodialysis find they can eat and drink normally, need far fewer tablets and feel considerably better. Patient stories like Marion Higgins, Patrick Pearson-Miles and Jonathon Hope tell it much better than I can.

Peritoneal dialysis is a treatment that we should not forget and nor should we ignore its place in allowing people to maintain independence, avoid travelling to hospital and achieving a good quality of life. We now have automated peritoneal dialysis options for overnight dialysis and several units have commenced assisted peritoneal dialysis programmes, where a trained team member helps with the connections and mechanics of peritoneal dialysis.

Standard 4 of the National Service Framework for kidney disease states “renal services to ensure the delivery of high quality clinically appropriate forms of dialysis which are designed around individual needs and preferences and are available to patients of all ages throughout their lives”. So every person has the right to have dialysis at home. Anyone approaching or receiving dialysis, reading this, who is thinking about home treatment, should discuss the options with your kidney consultant and dialysis team. This should focus on fundamental decisions such as whether you wish to have home or hospital based treatment. Then consider which type of dialysis or if no dialysis is preferred (the conservative pathway); or whether transplantation is a possibility. It’s not like choosing which surgeon or hospital to go to for a gall bladder operation. That’s why on World Kidney Day in 2009, NHS Kidney Care, launched a template care plan to stimulate care planning for people with kidney disease. Care, or health planning promotes shared decision making - people need to know the pros and cons of each type of dialysis, transplantation and conservative care. People need to know what the impact of dialysis will be for individuals like themselves – how they will feel and what they will be able to do, what the fluid and dietary regime may look like, what complications might occur and their likelihood and of course information about survival. It’s not possible to predict these things precisely but the clinical team will be able to share local data on such outcomes and increasingly, and appropriately, people approaching dialysis are having the opportunity to discuss the various modalities with individuals and families who have received different forms of dialysis.

Home dialysis also costs less than hospital or satellite based dialysis. We know that the average costs of hospital haemodialysis are about £24K per year and peritoneal dialysis is about £18.5K per year. Haemodialysis at home does need set-up costs – for the room, machine and water treatment but these additional costs are offset by the savings in staffing costs in about a year. So, although the consumable costs for, say, dialysis 5 times per week at home are of course greater than the consumable costs of in-centre dialysis 3 times per week, the overall service costs are considerably less. Not to mention the transport and time savings.

There are several barriers to achieving home dialysis, not only related to perceived financial issues but also involving patients and, perhaps more importantly, clinicians, commissioners and managers. It is apparent that there are a variety of approaches to common difficulties and that even in the best performing units there is scope for improvement. At the recent home dialysis meeting in Manchester there were over 250 people sharing experience, learning from each other’s successes and failures and considering how we as a community can optimise shared decision making so that the “right” proportion of patients are on home therapies. That will not be the same number in every unit – preferences of an inner city population close to a dialysis unit may be very different from those in a rural population with long distances to travel. I was particularly encouraged that so many patients attended the home dialysis meeting and I would like to see patients, clinicians, managers and commissioners championing choice so that high quality clinically appropriate forms of dialysis, designed around the needs and preferences of the individual are available to patients of all ages.

Published in Kidney Life magazine in 2009

Thursday, 21 October 2010

I can't get no .... satisfaction

Two publications caught my eye this weekend; Keith Richard’s autobiography of The Rolling Stones and “Real Time Patient Feedback” best practice guide from the Practice Management Network. From the serialisation in The Times, the former sounds like a fascinating glimpse into the inner dynamics of one of the most successful rock and roll bands ever, no doubt it will lead to new management books on team works. The latter has been developed in 22 GP practices in England and collects the learning from practice managers and GPs on how to get the most out of real time patient feedback. It has been developed in primary care but has some messages for secondary care. It sets out to help the clinical teams consider what you want to find out from your patients; and the best way to carry out the feedback process. It doesn’t set out a best method but would help you in choosing survey methods, gathering information for improvement and how to use real time feedback to add value to the clinical exchange between patients and healthcare staff.

The British Medical Journal also had an article and an editorial on measures of patient satisfaction and found that asking about patient experience was more discriminatory than patient satisfaction scores. Listen to your patients. High satisfaction scores only indicate that care is adequate, we should concentrate on the low ratings not the average because dissatisfaction, or would Mick Jagger call that no satisfaction, indicates problems that should be addressed.

They concluded that although it is difficult to measure patients’ perceptions of healthcare, it is most appropriate that patients should assess the inter-personal dimension of quality of care because they are the ones to whom we are all ultimately accountable. It is therefore crucial that patient surveys are refined to maximise precision and minimise bias. The research community needs to develop and refine robust and comparable measures of this important aspect of quality of care.

Listen to the patients

The Manchester Conference on Home Dialysis goes from strength to strength. The social movement that began at this meeting three years ago is now in full flow. In 2008 there was a feeling that home dialysis’ time had come, last year individuals and teams came to learn how to set up programmes and a show of hands last week revealed what progress has been achieved. Going from none on home haemodialysis to even one or two is a quantum leap – but many units have now made that transition. Not every unit is in the same place and sustainability needs more than a handful of patients and must relay on more than one or two champions in the kidney units. A theme this year was that everyone in the dialysis team had a role in promoting home therapies, should be listening to patients and hearing what they say and challenging the system, that’s all of us, to provide each individual patient with the most appropriate form of renal replacement therapy for their needs. So that’s 100% of individuals should be given choice, not some arbitrary percentage like 15% must be on home HD.

Sandip Mitra (home dialysis lead at Manchester Royal Infirmary) had asked me to speak about the learning from the NHS Kidney Care Improving Choice Roadshows that have been hosted across the country over the last six months. The most powerful part of each of these events were the patient stories so rather than present the statistics which are impressive in themselves, Bev Matthews and the NHS Kidney Care team arranged for a panel of patients to come along to tell their stories and answer questions from the audience. Nick Maguire (a clinical psychologist and home haemodialysis patient himself) compered our session and did a great job. We also heard from partners and carers – their views, their roles, their needs. There seems to be many different approaches to carers, most common could perhaps be best summed up as inadequately considered. This is a serious oversight that became apparent to me at the first roadshow when Jean Segal interrupted her husband Stuart who had just said “it’s a doddle” with a heartfelt “well it’s not for me, who thinks about the carers?”.

Bringing patients together, to exchange stories, concerns and solutions they have discovered helps. Renal Patient View, that should be available for every kidney patient in the country, has recently launched an online home dialysis discussion forum that will provide peer support.

Watch, listen and hear some of these stories from our Roadshows at NHS Kidney Care and read the frequently asked questions in “Improving Choice: listening to patient stories”.

Related blogs

Wednesday, 13 October 2010

Bad medicine or an opportunity to integrate

60 mils/min/1.73m2

Maximum estimated Glomerular filtration rate that is associated with all cause and cardiovascular mortality in the general population
The Week in Numbers
British Medical Journal, 9 October 2010

The accompanying lead editorial by Vlado Perkovic and Alan Cass at the George Institute for Global Health starts with the statement – “prevention of stroke, through the identification and management of risk factors is a public health priority.” They are commenting on the linked systematic review by Lee and colleagues that assesses the association between kidney function defined by estimated Glomerular filtration rate (eGFR) and the subsequent risk of stroke. The overall risk of stroke was 40% higher in people with an eGFR below 60 mils/min/1.73m2. This risk was graded, with a 28% higher risk for people with an eGFR of 40-60 mils/min/1.73m2 but 77% higher for those with an eGFR below 40 mils/min/1.73m2. The editorial comments that the persistent association after adjustment for known cardiovascular risk factors increases the likelihood that dissociation is real.

The findings of the Chronic Renal Insufficiency Cohort recently published in the American Heart Journal (2010: 145 pg 690-694) showing that 18% of individuals with mild to moderate CKD (mean eGFR 43 mils/min/1.73m2) also had atrial fibrillation may explain some of the increased risks. This rate of Atrial fibrillation, if you will forgive the pun, is 2 to 3 times greater than would expect in a non-CKD population .

In the same issue of the British Medical Journal as Lee’s paper on CKD and the risk of stroke the Reykjavik prospective study from Iceland reports that even the earliest stages of CKD are associated with excessive risk of subsequent coronary heart disease. Advanced stages of CKD are also associated with non-vascular mortality, particularly deaths not attributed to cancer. This is a large, long term study. Men and women who were resident in Reykjavik were recruited between 1967 and 1991 and were followed up for a median of 24 years. Importantly, the participants in the study provided urine for proteinuria estimates as well as blood for eGFR. The analysis shows that proteinuria, even in the absence of a lowered eGFR, is associated with an increased vascular risk of between 55 – 72%.

These studies were quite different in design and scope: the first was a retrospective meta- analysis, the other two were prospective studies. Lee’s study involved 284,672 participants from a variety of countries. The Chronic Renal Insufficiency Cohort was from North American and the Reykjavik study was a prospective cohort study in 16,958 individuals were followed for nearly a quarter of a century. Together they add important information on the risk stratification of patients with CKD. Perkovic and Cass ask the question “what are the implications for clinical practice?”. The answer: at the very least, evidence suggests the presence of CKD (either reduced eGFR or albuminuria but especially both) should act as a “red flag” that triggers cardiovascular risk assessment and implementation of an appropriate preventative strategy.

It is “bad medicine” just to take a single low eGFR measurement and label someone as having kidney disease. The methodological challenges of measuring serum creatinine and the bias within the various eGFR formulae are well know. A low eGFR result should trigger thinking – why was the kidney function checked?; could this be acute kidney injury?; what drugs might be implicated?; what’s the level of albuminuria?; and are there earlier serum creatinine measures to provide the confirmatory evidence of chronic kidney disease?

Mainstreaming kidney disease management with cardiovascular risk prevention strategies not only holds out the prospect of a preventative dividend in terms of end stage renal failure, it also provides the opportunity to integrate risk assessment and detection of early disease, clinical management, patient and public engagement across the whole panoply of vascular disease.

Wednesday, 6 October 2010

Countdown to the patient transport survey: one week to go

There’s not long to go before the second Patient Transport survey takes place in all renal units on 13 and 14 October. All haemodialysis patients will be given a survey to complete when they attend their unit for dialysis on those days. It will ask about their recent experience of travelling to and from dialysis. There are also surveys for every renal unit manager and renal transport commissioner.

The survey is part of the National Kidney Care Audit which is run by The NHS Information Centre.

As I’ve said before, the audit is vital for monitoring and improving patient transport services. This is so important for patients, whether it’s convenient pick up and journey times for those using provided transport, or the ability to park for free for those using their own cars. It will give us an opportunity to see what has changed since the last survey in 2008, and where improvements can be made.

I would like to encourage all haemodialysis patients to take part. It shouldn’t be difficult to fill in and will really help to make a difference. The results will be completely anonymous so nobody will be identified in any way. For those of you working in renal units, please support the survey by helping patients to take part.

You can find out more at

Tuesday, 5 October 2010

Quality Standard for CKD

The National Institute for Health and Clinical Excellence (NICE) have issued a draft Quality Standard for Chronic Kidney Disease covering the whole CKD care pathway and supported by 14 quality statements. The statements range from early detection of those at risk, specialist assessment, planning for dialysis and transplantation to experience of care including transport for those receiving hospital or satellite based haemodialysis.

  1. People with risk factors for CKD are offered testing and people with CKD are correctly identified.
  2. People with CKD are assessed for disease progression and associated complications.
  3. People with CKD are defined at risk groups are referred for specialist assessment in accordance with NICE guidelance.
  4. People with diabetes and microalbuminuria and people with higher levels of proteinuria are enabled to maintain their systolic blood pressure within a target range 120-129 mmHg and their diastolic blood pressure below 80 mmHg.
  5. People with anaemia of CKD are offered anaemia therapy in accordance with NICE guidance if they are assessed as being likely to benefit in terms of quality of life, physical function or avoidance of blood transfusion.
  6. People presenting with acute kidney injury have their medication reviewed and receive an assessment of volume status, multistix reagent strip urinalysis, and an assessment of renal morphology and the presence or absence of obstruction.
  7. People with progressive CKD whose eGFR is less than 20 ml/min/1.73M2 or who are likely to progress to established kidney failure within 12 months receive timely and balanced personalised information on established kidney failure and renal replacement therapy options.
  8. Where clinically indicated, people with established kidney failure start dialysis with a functioning Arteriovenous fistula or peritoneal dialysis catheter in situ.
  9. People with CKD are immunised against infection in accordance with current policy.
  10. People under the care of renal services have their risk of healthcare associated infection minimised.
  11. People with CKD receiving haemodialysis or training for home therapies who are eligible for transport, have access to an effective and efficient transport service.
  12. Medically suitable people with CKD are supported to receive a pre-emptive kidney transplant before the need for dialysis.
  13. People with CKD have a current agreed care plan appropriate to their stage and rate of progression of CKD.
  14. People with CKD needing end of life care or conservative management of established kidney failure, have a jointly agreed advance care plan and access to all non-dialytic medical care for their CKD.

Each of the statements is accompanied by quality measures with definitions, numerators and denominators so that service quality can be assessed and improvements targeted to where they are most needed for the local population. For instance the proportion of people with CKD who need end of life or conservative management of established kidney failure who have a jointly agreed advanced care plan or the proportion of people who start haemodialysis with a functioning arterovenous fistula. Simple measures such as the proportion of medically suitable people with CKD who receive a pre-emptive transplant before the need for dialysis have been chosen so that they are easy to understand and measure.

The quality standard also describes what each statement means for patients, what service providers should do, the role of healthcare professionals and what specification commissioners of care should expect.

The CKD standard will form the basis of future clinical audits and quality improvement schemes. It is likely to link directly to the Outcomes Framework (LINK TO BLOG), an integrated approach to the provision of kidney care is emphasised throughout.

Have a look and have your say on these 2 key questions:

  1. Have NICE identified all appropriate outcomes for each individual quality statement?
  2. Can you suggest any appropriate outcome measures which you feel would illustrate whether this standard as a whole has been achieved?

The consultation is open until 1700 on 10 November 2010.

Recovery, rehabilitation and reablement

How can the latter stages of patients’ hospital stay function more effectively to improve patient experience within the ward, encourage confidence on discharge and improve long term outcomes? The Outcomes Framework, the need to improve efficiency – length of stay is a major cost driver, and the move to make hospitals responsible for patients for 31 days after discharge by not paying for readmissions within that period are focussing attention on the need to improve recovery, rehabilitation and re-ablement across health and social care. This applies to those people coming to terms with starting dialysis or starting immunosuppression for vasculitis, those recovering from acute kidney injury (AKI) or after a transplant as much as people entering rehabilitation after a heart attack or stroke.

Rehabilitation is “an active process by which a person temporarily or permanently disabled by injury or illness is restored to the optimum level of physical, psychological and social function in the context of their previous life and personal experiences. Whenever possible this includes return to chosen or necessary paid or unpaid work and leisure activities”. Reablement is the latter part of that process – the return to “normality”.

This is a big issue. The NHS Institute for Innovation and Improvement estimate that on any one day, 25% of all acute hospital inpatients have no clinical need to be there.

My impression visiting kidney wards up and down the country is that things have improved but that there are still too many people in bed when they could be sitting out, too many without their own clothes and still a lot who could be at home if social care and support were in place in a timely fashion.

A range of recent national audit office reports have identified a lack of well co-ordinated responsive rehabilitation as a common theme.

“Although rehabilitation may help to reduce length of stay, minimise hospital re-admissions and reduce the use of NHS resources following the initial period of hospitalisation, it has not been considered to any great degree by Strategic Health Authorities in their reviews of major trauma services”.
National Audit Office, February 2010

“One of the main barriers to more effective stroke services is the persistent failure of health and social care to work effectively together”.
House of Commons Committee of Public Accounts, March 2010

The Renal Adaption Programme at Imperial College Healthcare is a nurse-led initiative that was set up by Michelle Clemenger and the peritoneal dialysis nursing team at the West London Renal and Transplant Centre in December 2008 to support patients arriving for dialysis in an unplanned fashion who hadn’t had the benefit of pre-dialysis education from the CKD team. The educational support provided to those who present late or unplanned with acute or chronic renal failure provides information and advice about all the treatment options available including home dialysis and the goal is to see people within 48 hours of referral by the ward team. This is followed by education and support over a minimum time period of 6 weeks to help the patients and their families through the changes ahead giving both psychological and educational support. The team uses a range of mutli-sensory learning tools as an aid to deliver the educational support and information. They have also put together a renal adaption programme toolkit including a tailored DVD that’s easy for people to watch whilst on haemodialysis and in the evening with their family who might not be able to visit during the day.

A focus on rehabilitation and developing similar support programmes replicating Michelle’s ideas and materials will improve choice, share decision-making and almost certainly save money by reducing length of stay and increased uptake of the less expensive home dialysis modalities.

Tuesday, 28 September 2010

Ode to home dialysis

The NHS Kidney Care home dialysis roadshows came to an end yesterday in London. They have been great fun – every network and area now seems energised. At each event the patient stories were the most compelling reason to look at how we offer choice and consider how we might extend home therapies to all those who want it and are suitable. Paul Connelly who spoke at the London workshop bemoaned the fact that when he started dialysis there was no kidney service at all in Surrey, making St Helier a long 33 miles away for 3 times per week dialysis. When the unit opened in Woking it was just round the corner and Paul describes the provision of local dialysis as changing his life. But he heard about home dialysis from another patient and he knew for him the block might be needling. Having set himself the task of self needling he won that battle and told us at the meeting that he cried the first time he put his needles in because he knew what that meant. He now feels brilliant; he feels that he has his life back and, as Paul says, “you can’t buy that”. Paul is now established on home haemodialysis and manages his treatment with the St Helier team.

On the same day, the East Midlands Renal Network Annual Report for 2009/10 arrived on my desk. It’s a good read, it’s an ambitious statement and it includes this fabulous poem.

Ode to Home Dialysis
Now we have a further stage
Home dialysis, it’s all the rage
No more hassle in making our way
Driving through town at the wrong time of day
Transport’s not a problem any more
We just walk through the conservatory door
Much more convenient you realise
To choose your own time to dialyse
It’s quieter too, much more calm
Even if we have a machine alarm
Yes it’s still a bit of a bind
But at “home” I can quickly unwind
I can look down the garden or watch TV
Read a book, listen to the radio, or play a DVD
I control the volume of these soundings
And I am much more comfortable in these surroundings
I have more choice as you can see
About the way that dialysis affects me
Be assured the backup service is very efficient
Just a phone call for help is usually sufficient
We have Paula, Wendy and technicians too
With supplies provided for all that we do
For three years now to our surprise
Home is very much the best place to DIALYSE
NA & B Bacon, 22 April 2010

Two weeks to go to the 2010 patient transport survey

The National Kidney Care Audit of patient transport for haemodialysis will be collecting data again on 13-14 October 2010. The audit comprises a patient and an organisational survey and is based on the National Service Framework Part 1 that states:

“adequate transport is so important to people on haemodialysis that it plays a vital role in the formation of patient views and attitudes towards dialysis. Good transport systems can improve patient attendance and shorter travel times can improve patient co-operation if the dialysis treatment frequency needs to be increased. Efficient transport facilities reduce interruption of patients’ social lives and may therefore improve quality of life”
Renal NSF Part 1

The audit benchmarks against the Renal Association’s clinical practice guidelines that recognise the importance of travel time for haemodialysis patients, and state:

“… except in remote geographical areas, the travel time to a haemodialysis facility should be less than 30 minutes or a haemodialysis facility should be located within 25 miles of the patient’s home. In inner city areas travel times over short distances may exceed 30 minutes at peak traffic flow periods during the day” …… “… haemodialysis patients who require transport should be collected from home within 30 minutes of the allotted time and be collected to return home within 30 minutes of finishing dialysis”
Renal Association Clinical Practice Guidelines on Haemodialysis 2009

The 2008 audit covered 242 separate dialysis units or satellite units leaving only 5 non-participating HD units in England, Wales and Northern Ireland – Aintree University Hospital, St George’s Hospital, Stratford-on-Avon, Whitnash - Leamington Spa and Yeovil that I hope will be joining in the exercise this October.

The 2008 data showed that overall, about 75% of people were picked up from their home within 30 minutes of the allocated time and for nearly 60% of patients the travel time to their dialysis unit is 30 minutes or less but some individuals are regularly travelling more than one hour to and from dialysis. Nearly 40% of people wait 30 minutes or more after finishing dialysis before they begin their return journey home. The patient stories speak much louder than these cold statistics and the variance across units identifies patient transport as an area where we can make real improvement.

The 2008 audit made several recommendations including:
  • Clear and transparent commissioning arrangements with lines of accountability and means of monitoring performance should be agreed by commissioners, hospital trusts, dialysis units and transport providers.
  • Dialysis providers should be involved in the transport service which patients use. Eligibility criteria, standards of performance and quality of service should be explicitly agreed.
  • Patients should be involved in the commissioning and monitoring or transport. The audit demonstrated that patients want to contribute. Using the transport service gives them a unique insight into the process and a clear interest in driving up quality.
  • All dialysis units should carry out regular audit of patient transport including discovering the views of its patients.

We know that patients travel considerable mileage – it’s been estimated at close on 40 million miles per year on the road for all haemodialysis patients. Many people are not having dialysis at their closest unit – this may be for clinical reasons but in some instances, it will result from poor planning. Patient transport for dialysis still wastes the time of many individuals receiving this modality. Excess travel is poor for health, wastes NHS resources and damages the environment. We can do better.

I hope that participation in the 2010 audit can be a driver for change and improvements in patient transport services. For more information contact the NHS Information Centre audit team at

related blogs
Patient transport survey 2008, first phase launch
Patient transport survey results launched