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.

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

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)
http://itunes.apple.com/gb/app/id395152935?mt=8

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.

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

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

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.