Health Survey England: secrets exposed

Why aren’t people with kidney disease told about their condition? I would have thought it was a basic right but there is a lot of evidence that there is systematic secrecy on the issue of kidney disease across the NHS. Personally, I would be pretty annoyed if I found out I was on a chronic disease register and hadn’t been told. That wouldn’t feel much like a patient-centred service with quality as its organising principle!

There are now over 2 million people in the UK on primary care CKD registers which is about 4.3% of the adult population. When Health Survey England, supported by NHS Kidney Care, asked people if they were known to have kidney disease only 1% of men and 1.3% of women reported having been told by their doctors that they had kidney disease; and I don’t think the practise nurses had told them separately. Even in the over 75 years age-group only 2.7% of men 3.4% of women knew they had the condition. Yet, when Health Survey England tested kidney function in that age-group, 29% of men and 35% of women were found to have CKD stage 3-5 or an estimated GFR of less than 60 and a further 15% of men and 8% of women had significant proteinuria.

Health Survey England can’t tell us why less than 10% of those with CKD are being told. For some people their GP will not know because they haven’t been clinically tested outside of the health survey study, for some their abnormal results will have been detected and reported but not recognised or understood by their GP - they are in the missing million we know have kidney disease but are not on primary care CKD registers. But there seems to be at least as many and probably more who are on CKD registers but who haven’t been told about their kidney disease! Bizarre I know. The cornerstones of chronic disease management are the 3 Rs, the 3 Is and the 3 Es

I have been using that slide since before the renal strategy was published and have periodically changed the central segment. The first time I used it I put the Chief Medical Officer in as a key enabler, the second time the Quality and Outcomes Framework went in to make the case for a CKD domain in the primary care pay for performance system. Shared decision making – the importance of a partnership approach to health has held pride of place for a while. How can we educate, empower and encourage the behavioural changes necessary to reduce vascular and progressive kidney disease risk, let alone be in a partnership with people who don’t even know they have kidney disease?

I would like to see the Quality and Outcomes Framework change to provide more of a focus on what patients are told and how they are involved in supporting their own health. That would provide encouragement by financially rewarding GPs to involve patients and the public more in the understanding of health, disease and risk. But we also need to understand why we are in this situation in the first place. Why are we so secretive? Why do we hide information from patients?

Renal Patient View – giving people with kidney disease information, power and responsibility

Sir David Nicholson in his foreword to the Operating Framework for the NHS in England 2012-13 draws attention to the need to get the basics right every time. The cause of short-comings in dignity and basic care are complex and deep routed, often as much to do with culture and behaviour as with resourcing and prioritisation.

The Operating Framework, work of kidney and other charities, the General Medical Council and the professional societies have a united agenda in putting patients at the centre of decision making. Information and support for patients and carers runs right through the Operating Framework. The experience of patients, service users and their carers should drive everything the NHS has to do.

“Grasping what the figures meant enables us to formulate questions for consultations, to understand explanations and in some cases, since we were first to see the figures in context, to alert consultants to changes as soon as they appeared. There is a sense that the relationship between the patient and the doctor becomes more collaborative as soon as the patient understands the figures before the consultation takes place …. Because of the service, we benefit more from consultations”.

This quote from a renal patient view (RPV) user shows the impact signing up to RPV can have. Writing directly to patients in plain English , rather than merely coping them in on a gobbledegook jargon filled letter to their GP that the GP probably will not understand , can have a similar effect and using the two approaches in combination can really transform kidney care from the 19th to the 21st century.

So it’s no wonder that I have been waiting in anticipation for the RPV statistics to see who is top of the league - not that league position is everything. But I was particularly interested in how my local Salford Royal Foundation Trust team were doing since one of our medical secretaries, Janet Cribbin, took on the task of helping people enrol when they are attending outpatient appointments. Dr Grahame Wood (consultant kidney doctor) has led from the medical side but Janet has been doing the work! Great progress - well done both of them!

Have a look if your unit has RPV available for patients and how it is doing (above). Congratulations to those units doing well and perhaps time for an early new years resolution if you are in a unit in the drop zone to use a football table analogy.

For those who are not on RPV and don’t know the detail it is freely available for every kidney unit and every kidney patient in the United Kingdom and is effectively a “my health space” for people with kidney problems . Dr Amir Hannan (a general practitioner from Tameside) cites it as one of the “jewels in the crown” in his piece “patients need access and understanding of their health records” in the Guardian online. But I will leave the last word to a RPV user -

“We’ve been astonished at the difference in the patient-doctor relationship from what I remember of experiences a long time ago – a world where deference on the part of patients and distance and authority on the part of the doctors coloured the relationship, making it less effective than it should/could be. The website is a very visible statement of a wider change”.

Christmas message 2011

The year began with a solar eclipse - partial in fact, obscuring the upper three-quarters of the sun leaving a "smiley face” which I thought at the time might be a good omen. Perhaps it was a celestial smile at the turmoil and changes we would see from the Arab Spring to the Euro crisis and things closer to home? Well, we got over the introduction of tariff, lots of hospitals are now using e-alert systems to identify early acute kidney injury and steady progress has been made with Cause for Concern registers; and the world didn’t finish!

The dialysis and then transplant paradigm is also shifting. We have seen an increase in live donor transplants again this year and increasing these are performed pre-emptively. I think every unit has now moved over to a laparoscopic keyhole approach for the donor. As a system, we are beginning to think transplantation first whenever possible. Some units are now at 60% of their live donor transplants occurring pre-emptively and the NHS Kidney Care timely listing project will, I am sure, drive further quality improvement, reduced delays in transplant work-up and result in many more people not having to have the intrusion and risk of dialysis for they get their "gift of life”.

Live donor transplant before the need for dialysis also saves money and, given efficiency is one of the 7 dimensions of quality we shouldn’t shy away from cash-saving where it improves experience of care and outcomes for patients. The Kidney Care Quality Innovation, Productivity and Prevention initiative or QIPP initiative consulted on and developed through the Autumn sets out the goals that if /WHEN achieved will improve quality for patients and provide value for money for taxpayers: home therapies, including transplantation when they are the patient’s preferred modality; integrated and co-ordinated care with primary care colleagues using IT and virtual clinics to manage the local population providing individualised care planning and involving patients in care through renal patient view, in shared decision making for conservative care as well as home therapies – indeed in all care decisions and in service planning such as transport for haemodialysis..

Despite the uncertainty of 2011, the changing NHS structures and the global upheaval, a lot of certainties remain – kidney disease is here to stay, healthcare professionals together with the patients and carers can improve the outlook for people with kidney disease and lots of research questions remain to be answered.

Enjoy the holiday season. Spare a thought for the generous families who have donated this year and for the carers who give unstintingly (and unpaid) and start the New Year with ambition, passion and compassion. Let’s come out fighting for all our NHS in 2012.

What is self management support?

The actions individuals and carers take for themselves, their children, their families and others to stay fit and maintain good physical and mental health: meet social and psychological needs; prevent illness or accidents; care for minor ailments and long-term conditions; and maintain health and well being after an acute illness or discharge from hospital.

The above definition is from the Department of Health document ‘Self-care - a real choice (2005)’ but there are many others which sound pretty similar.

Supporting self-management means providing information and encouragement to help people maintain greater control by understanding their condition and being able to monitor and take appropriate action. Interventions to support self-managing can be used at different points of the health continuum, from those who do not have a long term condition through to those who are living with severe and multiple long term conditions.

The better question is does self-management support work?

The Health Foundation have reviewed more than 550 pieces of high quality research suggesting that it is worthwhile to support self-management, in particular through focussing on behaviour change and support in self efficacy.

Hundreds of systematic reviews, randomised control trials and large observation studies have examined the impact of supporting self-management for people with long term conditions. Whilst there are few in kidney disease and the findings of individual studies are mixed, the totality of evidence suggests the support in self-management can have benefits for peoples’ attitudes and behaviours, quality of life, clinical symptoms and use of health care resources. Full details of the Health Foundation review can be found in “The Health Foundation: Evidence: helping people help themselves, May 2011"

Kidney disease is a silent killer. Unlike many other long term conditions such as diabetes, asthma or rheumatoid arthritis there are few if any symptoms in the early stages and therefore the techniques to support self-care for people with kidney disease might be more akin to those that are successful in hypertension and hyperlipidaemia than those of proven benefit in conditions where immediate relief of symptoms might be expected. It is important to plug this kidney research gap but in the meantime the overall evidence is clear that self-care has a large part to play in the management of chronic diseases.

It's not magic but 3 + 1 makes 4 good outcomes

“I don’t pretend we have all the answers. But the questions are certainly worth thinking about”
Arthur C Clarke

Who asks the questions in the interviews you go to? The doctor, the nurse or the patient? The power of ask 3 questions

What are my options?
What are the possible benefits and risks?
How can we make a decision together that is right for me?

was brought home to me recently at a visit to Newcastle to see the Health Foundation MAGIC project. This team have now produced a video; why not put it on the TV loop in your outpatients or surgery to complement printed copies of the 3 questions and support patient engagement? Even more powerful might be to have a poster with the three questions in every consulting room to give patients permission to speak and ask.

On the ward round, one question has now been shown to make a difference. Stopping for a second when the observations and urgent clinical matters have been attended to and asking “is there anything more I can do for you this morning? I have the time” is proving very powerful at increasing patient engagement, identifying issues that might prolong length of stay and improving quality of care while people are in hospital. If you work on a kidney ward or unit try it for a few weeks and if it works in advent, make it systematic in 2012. I am reliably told from several sources that it does not take any more time than the current way we do things. Have a go and do let me know how you get on.

Turning audit into action

I recall the smiles and merriment around the room when Mr Neil Parrott (Consultant Transplant Surgeon, Central Manchester) was incorrectly down as a representative of the British Transport not Transplant Society at one of our BRS workforce meetings in 2002. Hoots of laughter – but no-one asked the question “well who is representing transport?”. The difficulty of identifying someone to own the issue of transport for dialysis has been part of the problem.

Everyone in the kidney community knows that transport for haemodialysis is always one of the top 3 concerns patients have – it’s usually first, second and third!In June 2009 the NHS Information Centre published the results of the National Kidney Care Audit which examined the quality and satisfaction of patients receiving haemodialysis for established renal failure and highlighted that although in many places journey times were reasonable, overall the system performed poorly in relation to transport pick-up and patient satisfaction. This was the first time robust national data was available. A call to action was made but results were not that much different when the audit was repeated in October 2010 and published again earlier this year.

The audit loop had not been closed; a common criticism of clinical audit. But the issue is on the kidney care networks’ agenda now and, in addition, transport for patients receiving haemodialysis is now one of the core Renal Association NHS Evidence approved clinical practice guideline audit measures.

NHS Kidney Care has developed ten specialised commissioning group report summaries which describe the 2010 survey findings and compare them with the findings from the earlier study. Kidney Care Networks, commissioners and providers should now be using the detailed data in these reports for assessing and improving the transport services they currently provide. Local kidney patient associations and groups should also be involved in the commissioning of transport services – that’s the only way to get a patient centred and patient sensitive service.

Patient transport services have also recently been subject of Parliamentary review by the Public Accounts Committee which recommended a series of actions to improve the current poor patient experience, efficiency and value for money.

Perhaps most powerfully of all, we have a NICE chronic kidney disease quality standard to help close the audit loop and improve patient experience.

Quality statement 15: patient transport
Quality statement
People with CKD receiving haemodialysis or training for home therapies who are eligible for transport, have access to an effective and efficient transport service.

Quality measure Structure:
a) Evidence of local transport arrangements to ensure that people with CKD receiving haemodialysis or training for home therapies who are eligible for transport, have access to an effective and efficient transport service.b) Evidence of local arrangements to act upon the latest patientsatisfaction results from the National Kidney Care 2010 Patient Transport Audit.

What this means for different people:
People receiving dialysis in a renal unit or hospital, or training for home therapies, who are eligible for assistance with transport can obtain efficient and reliable transport to and from the unit or hospital.

Transport service providers quality ensure they provide effective and efficient transport for people receiving haemodialysis in a renal unit or hospital or training for home therapies, who are eligible for transport.

Healthcare service providers ensure that haemodialysis treatments in a renal unit or hospital and training for home therapies take place on time so that transport schedules can be upheld.

Healthcare professionals assess people’s eligibility for transport if they are receiving haemodialysis in a renal unit or hospital or training for home therapies. They review this when circumstances change and help to ensure that haemodialysis treatments, and training for home therapies, take place on time so that transport schedules are upheld.

Commissioners commission services that provide effective and efficient transport for eligible people receiving haemodialysis in a renal unit or hospital, or training for home therapies.

The non-emergency patient transport service specification of the East Midlands Kidney Care Network has now included these measures in its tendering process. Kidney unit specific key performance indicators including arrival and collection of patients, journey times, patient satisfaction and information provision will soon be part of the regular transport review process in the East Midlands. In the three North West networks the review should link to the local haemodialysis patient eligibility exercise. It sounds like real progress but if not, the data, as well as the stories will be there for all to see, we will be able to learn lessons and try again. The national audit will be carried out again in October 2012 by NHS Kidney Care, offering an opportunity to assess progress.

Read it, read it, read it

There are lots of documents out this week including the Department of Health’s Operating Framework for 2012-13, the interim report of the Futures Forum and the first publication of the NHS Commissioning Board – the Commissioning Operating Framework – engagement document.

They are all key bits of the jig-saw and if you have a look through them you will start to get a clearer idea of where our health system will be in April 2013. That’s D-day for the new world. The NHS Futures Forum gets the ABC gold writing star. Accuracy, brevity and clarity:

• Patients must have better online access to services and to their health and care records … to which I would say Renal Patient View


• Re-designing health and care services to integrate better around individuals and their family’s needs and allowing for better ways of delivering seamless, integrated care for individuals through the transition … to which I would say have a look at the Hugh Raynor integrated diabetic/kidney disease model on NHS Evidence (link)


• Public Health England and the NHS Commissioning Board to set out what their partnership will look like and explain how NHS Commissioners can obtain population health advice … take a look at the Atlas of Variation, the NHS Kidney Care CKD profiles and programme budgeting

The same themes echo through the other documents and although you couldn’t say the word “kidney” is peppered through the recommendations, nearly all of them are relevant to people with kidney disease. Remember, most people with kidney disease have other long term conditions as well and often social needs. The high level national prioriites that are closely aligned to the needs of people with kidney disease are the low hanging fruit. Achieving the best possible kidney care across the country will have some difficult bits as well but the ingenuity of the kidney community never fails to astound me and whatever your local kidney care priorities may be, others working on the same issues may have good ideas of solutions you can pinch.

NHS Direct decision aids – advanced kidney disease

Planning for end of life care patient decision aid, developed by Isabel Hospice and the Addenbrookes Hospital kidney care team has been launched by NHS Direct.
The English is very clear; it covers care planning, building on “my kidney care plan”, produced by NHS Kidney Care, benefits of talking and starting advanced care planning to help individuals achieve most in their remaining life and to plan for a good death.

It explores the individual ‘s thoughts about what a good death would be, needs assessment, do not rescusitate and lasting power of attorney. Considerations about preferred place of care, putting affairs in order and even organ and tissue donation are included. People can print off a summary of answers to use in discussion with the kidney care or primary care team, family and others involved care.

The Three Rs

The demands of treatment, metabolic consequences of kidney disease and psychosocial impact of major organ failure present a range of obstacles and often immediate problems or even crises that can make focussing on the long term goals of kidney care difficult for healthcare professionals, patients and carers. Yet the goal of care must always be to achieve the best possible state of physical, mental and social wellbeing for the individual, not merely the correction of chemistry or absence of life-threatening symptoms. There must be a greater emphasis on achieving the best recovery and reablement to foster as complete rehabilitation as possible. The new “3 Rs” – making sure we use our skills and do everything in our power to help people with kidney disease return to as best possible state of health and social functioning that can be reached. That’s a lot more than just planning for dialysis in the clinic or ensuring early discharge from the ward. It’s even more than expediting a live donor kidney transplant to avoid the need for dialysis.

The RRR phase is more complex in advanced kidney care than many other long term conditions with multiple interplaying personal, social, family and comorbidity factors as well as treatment modality defining the appropriate interventions, amount and mix of care needed and outcome. Goals need to be sensitive to patients’ health beliefs and shaped by individuals’ values. The aspirations, views and wishes of our patients need to be informed by our expertise in understanding disease mechanisms, treatment options and a synthesis of the evidence-based practice. The RRR component of the kidney care pathway is predominantly delivered and “managed” by nurses and the allied healthcare professionals of the renal multiprofessional team with the patient at the centre increasingly taking on self management, often supported by carers and linked to community teams. When that works and the person gets themselves back to best possible health it’s great – witnessing a patient you have cared for stepping up to the podium at the transplant games or photos of an 80th birthday celebration after 10 years on dialysis provide iconic images of that success. That doesn’t always happen. After diagnosis, effective intervention and seeing the treatment response, there is some pressure to move onto the next acute patient. Our current service design is modelled on the 20th Century cure paradigm which is often inefficient for the management of long term conditions and multi-morbidity in the 21st Century. It also frequently delivers an inadequate service for patients by setting limited goals such as “safe to go home”. There is often a very limited or no attempt at reablement (restoration of previous capacity or employment) and a poorly managed interface with social care characterised by delays, unnecessary assessment criteria failures and avoidable readmissions. It is illogical that social care is not involved at the earliest opportunity to both minimise and anticipate need. The current service model perpetuates and compounds the often large step-down in support from ward or main renal unit dialysis care to community and home care.
The importance of exercise in rehabilitation may seem obvious but it is often overlooked in kidney care despite a good evidence based for its therapeutic efficacy across the whole chronic kidney disease pathway from early diagnosis through to dialysis. The importance of physical activity in preventing and treating many diseases and conditions is indisputable, as regular readers of this blog will know with the recent publication of the Cochrane review and the Swedish monograph which has its own kidney disease chapter.

Rehabilitation is coming into focus nationally because of the high cost of prolonged hospitalisation and the disjointed nature of much of the care of the elderly. This can play to the advantage of people with advanced kidney disease so now is a great opportunity to sit down as a multiprofessional team with some patients and social care colleagues to design care planning in your service with the aim of delivering what patients want, not just what the doctor orders. No reason to wait - the finances of the NHS are moving in that direction but do evaluate. We need more high quality multiprofessional research into patient experience and outcomes in kidney care.

Getting better ...

… it’s getting better all the time (the Beatles 1967). The lyric popped into my head reading the most recent Commonwealth Fund report – the 2011 International Health Policy Survey of Sicker Adults in Eleven Countries. Although Paul McCartney wrote this song walking his dog and watching the sunrise, I think I may have had the lyric in my mind because I recently watched Martin Scorsese’s biopic “ living in a material world” on the life of George Harrison.

The Commonwealth Fund have sampled patients from a range of countries including a thousand patients from the United Kingdom; 62% of patients were 50 years or older and nearly 50% had two or more chronic conditions, had been hospitalised in the last year and over a third were taking more than four prescription drugs. They looked at a range of core topics including affordability and access to care, care coordination and care transitions, patient safety, patient centred care, doctor/patient relationships and patient activation, managing chronic conditions, medical homes and United States experiences by age and insurance status.

Spending per capita of the population now represents 9.8% of UK Gross Domestic Product (GDP) which is greater than Australia and New Zealand, lags behind other European countries and is dwarfed by the USA expenditure of $7960 per person which represents 17.4% of the GDP.

The comparisons make interesting reading. It’s reassuring to see that only 1% of people in the UK had a serious problem in paying medical bills, having to spend more than the equivalent of $1000 US on out of pocket expenses. This compares to 27% of the US population having difficulty paying bills and 39% of Australians who fit the profile having more than the equivalent of $1000 out of pocket expenses. The UK was also better than most countries at the ability of patients to be seen the same or the next day when needed and in getting out of hours care. We were in the top half in waiting time to see a specialist, there were fewer co-ordination gaps in care and, 84% of patients reported having their medicines reviewed with a pharmacist or a doctor within the past year. In the UK 79% reported a positive shared decision making experience with specialists where they were given opportunities to ask questions about recommended treatments, were told about their treatment choices and involved as much as they wanted to be in decisions about care.

Nearly 70% of people in the UK responded “yes” to the three questions “ in the past year has a health professional discussed your main goals and priorities with you ?”, “ …..helped make a treatment plan you could carry out in daily life?” and “ …..given clear instructions on symptoms and when to seek care?”. Switzerland ran us close scoring 67%

We weren’t top the league at everything. For people with heart disease, hypertension and/or diabetes, only 69% of people reported their blood pressure was under control last time it was checked which is the lowest of all the countries and compared unfavourably to Canada, Norway and the USA where 85% of patients had good BP control.

People who reported that they regularly saw the same doctor , who is accessible, knows you and helps coordinate your care scored much higher on doctor/patient relationships and communication, had fewer coordination gaps in their care and were more engaged. With the increase in the number of kidney doctors in many units over the last 10 years some of the personal touch and continuity has been lost and “seeing different doctors every time “ is one of the frequent comments I hear when I go secret shopping . Most of the people in the UK who had good coordination of care reported services were excellent or very good (88%) versus only 60% who considered their access to care restricted or who felt coordination was inadequately for their needs.

How do these great scores fit with the relatively low levels of patient activation reported from earlier studies of CKD where relatively low levels of engagement were usually found across a broad range of measures? The answer may be found in the precise questions asked or in the selective nature of the sicker adult group studied by the Commonwealth Fund. It may be that the questions need refining. My anecdotal experience chatting to a range of people to probe this question is that those with long term conditions rarely discuss their goals with clinicians – they usually discuss goals they think the clinician wants to talk about and usually these are clinical biometric goals. So although we are doing better than most countries and we should be proud of that I think there is still some way to go in providing coordinated holistic patient centred care.

Kidneys for Life

Donate Kidneys for Life Receive is the strap line for World Kidney Day 2012 and campaign material for 8 March 2012 is now available. There’s lots to choose from including fact sheets, web banners, stories and t-shirts.

March may seem a long time off but if you are going to get a screensaver on your hospital or company’s system for the day, or better still the week, or if you want to plan a local awareness raising event, the earlier you start the more likely you are to succeed. I would urge everyone in the kidney community to ask the questions:

• What could I do personally to raise awareness of kidney transplantation?


• What could I, as part of my local team do to make a difference?

Local media and local stories drive success and we each have a part we can play.

The NHS Kidney Care initiative on timely listing is providing a focus on pre-emptive kidney transplantation and the kidney care quality plan is helping teams remove unnecessary delays to transplantation. Make a song and a dance about your local success - however good you are doing, I know you can still raise the bar further. The WKD 2012 materials are great take a look at the 2012 campaign flyer. You could supplement with your own local news, link to stories or information about altruistic donation, have a look at the excellent Kidney Research UK and Kidney Alliance websites and work with your local KPA.

I like the silhouettes but thought this year I might be able to spot someone who'd undergone a nephrectomy or better still, an active silhouette with someone else's kidney in their left or right iliac fossa.

Prescribing Exercise

The World Heath Organisation cites the leading cause of global mortality as high blood pressure (13% of total deaths), tobacco use (9%), high blood glucose (6%), physical inactivity (6%) and obesity (5%). Physically inactivity is 4th on the list but it influences most of the other causes. The importance of physical activity in preventing and treating many diseases and conditions is indisputable, as documented by the authoritative, accessible and practical guide of the Swedish professional association for physical activity

Advice on physical activity in primary care is a pillar of the WHOs global activity plan.

Practical steps for immediate exercise prescription in general practice

• Ask about physical activity at every consultation, consider it a vital sign
• Apply the ‘6As’ to guide counselling – assess, advise, agree, assist, arrange and assess again
• A written (“green”) prescription is crucial – it takes just 30 seconds
• Display a poster with physical activity guidelines prominently in the waiting room
• Consider categorising patients into frailty levels. There is no need to medicalise physical activity for most people.
• Refer on – consider appropriate physicians, physiotherapists, clinical exercise physiologists, and certified fitness instructors
• Know your local resources for activity – the people and the places
• Remember that walking is free; find tips at: http://www.everybodywalk.org/
• Follow up the patient to chart progress, set goals, solve problems, and identify and use social support
• Lobby to make low cost, evidence based, cognitive and behavioural interventions widely available for referral by healthcare providers.

A recent editorial in the British Medical Journal emphasised that the written 'green' prescription (which compromises exercise and lifestyle goals) is a crucial element to signal the importance of exercise in health when people have chronic diseases. The Swedish book also takes a very medical view on something that many would regard as a normal and optional activity. Do we need to prescribe exercise? Well if we do - certainly one prescription does not fit all, a useful tip in the Swedish book is to categories the prescription according to the 4 levels of patient frailty.

Kidney disease figures prominently in the Swedish monograph. It has its own chapter and is also covered extensively in the diabetes and hypertension sections. Muscle fatigue is the most restrictive factor for the majority of kidney patients. Hence exercise should initially emphasise muscle strengthening and endurance training plus balance and coordination to be complimented with fitness training at a later stage. There are some sensible tips including ways to reduce the risk of tendinitis and specimen programmes of activity to follow. The final section of the kidney chapter deals with risks. To date, no patient has had a serious incident during or after exercise. And yet the authors suggest all patients with chronic kidney disease should be seen by a physiotherapist and all exercise should be carried out in accordance with the guidelines, under the supervision of a specialist physiotherapist and on the recommendations of a doctor. Are we at risk of turning something that should be a normal and enjoyable activity of daily living into something akin to 'school games'? Not that I am against school games at all - indeed, going right up stream we need more - although I was a little bit irritated shall I say, when my school forbade football and we were only allowed to play rugby in the winter months!

Medicalisation of normal activities of living has its risks. In the UK there is a GP referral scheme to personal trainers who require higher level qualifications. To help get people with medical conditions back exercising. Unfortunately kidney disease isn't covered and therefore I understand personal trainers aren't covered by their insurance to work with renal patients. The result is that Gym's and personal trainers often won't except kidney patients! By contrast, a range of other conditions including cardiovascular disease, chronic lung disease and stroke have level four courses, which means gym and leisure centres can run classes specifically for those conditions and personal trainers can work with individuals at home or in groups, which ever suits them.

Maybe with the Olympics coming up and the growing body of evidence to support the positive role of exercise we should be upping our game. In kidney services the support to exercise for people with CKD or on dialysis is, to be kind, patchy. Maybe we do need to prescribe exercise. Linking with the physiotherapists might provide the stimulus to design a system that offers exercise to every suitable patient with kidney disease. Our scarce physiotherapy resources may be better employed developing the systems and strategy and answering research questions rather than supervising every single patient. Who benefits from direct hands on support is an urgent research question.

Secretary of State announces new national early CKD audit

Health Secretary Andrew Lansley announced last week that chronic kidney disease (CKD) in primary care would be one of the new 11 topics for national clinical audit as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP). The CKD audit proposal was led by Hugh Gallagher, Consultant kidney doctor at St Helier hospital on behalf of NHS Kidney Care and the professional organisations from the kidney, general practice and diabetes worlds. The successful proposals were chosen from a total of 39 bids that were evaluated by the National Clinical Audit Advisory Group against explicit criteria. They judged that our early CKD audit would benefit from a national approach to help drive quality improvement. Robin Burgess, Chief Executive of the Health Quality Improvement Partnership said “Clinical audit is very often the single best method of ensuring the patient care that is provided for specific conditions is in line with best practice. Clinical audit is not simply a measurement process, clinical audit is a complete cycle that uses evidence based research, expressed in standards as the base for its improvement: but after measuring compliance with those standards, good clinical audit should always involve a programme of improvement to drive tangible change in healthcare provision”.

This builds on the National Institute for Health and Clinical Excellence (NICE) clinical guideline on CKD which is currently being considered for revision and the NICE Quality Standards in Kidney Disease.

Days later, the Information Centre published the latest Quality and Outcomes Framework data for 2010-11 which shows that now more than 2 million people in the UK are recognised to have kidney disease and are being managed using chronic disease management principles. In England the percentage of people with CKD stages 3-5 who are on practice registers has now risen to 4.3%. An increase of around 50,000 people compared to 2009-10. A relatively small rise given that the expected prevalence of CKD 3-5, from Health Survey England, is closer to 7% but, there is a good story in terms of proteinuria testing and recording. Have a look how your local practice is doing on the Information Centre website. Many GPs, nurses and practice managers have also been telling me that over the last year a great deal of effort has been given to getting the registers right – such as removing incorrectly disease labelled patients with only one low GFR.

So progress is steady and in the right direction. Variance in ascertainment, meaning how likely a person with CKD would be identified and registered in a particular practise, still remains large in comparison to nearly all other disease areas. This probably reflects primary care education, confidence and systems, all of which are being addressed by NHS Kidney Care programmes. It’s a good time to be developing a national audit and that variance shows that further great improvement can still be made in reducing the impact of kidney disease on both vascular events and risk of progression to end stage kidney failure.

Give a kidney, one's enough

If you are thinking of donating a kidney there’s a great new charity and website just launched to support altruistic kidney donation. The history, rationale, risks, statistics and reports are all available but most powerful are the stories: “pity I can’t do it again”; “my heart told me to do it”; “the risks are less than those of mountaineering or micro-light flying”.

Embedding patient empowerment in health reform

Patient empowerment can be thought of as patients being an active and self determining part of their healthcare, rather than passive recipients of services. The key question is: how to health systems efficiently embed this much admired concept into real everyday practice?

A new report from the George Institute for Global Health “Realising the potential of patient empowerment for tackling chronic disease” (LINK) argues that there needs to be a major shift in thinking around patient empowerment from a nice to have to a fundamental part of reform for chronic disease where its impact and value add are evident. The principles of empowerment are a core part of the chronic care model where the interaction between an “informed, activated patient” and a “prepared, pro-active practice team” is widely accepted as en effective strategy to address long term conditions.

The chronic care model provides an evidence based approach that outlines the elements needed in a system that seeks to provide high quality care for individuals with chronic disease. Its central premise is that quality chronic care is not delivered in isolation but rather can be enhanced by key factors such as;

Community

Health system

Self management support

Delivery system design

Decision support

Clinical information systems

The George Institute team emphasise that patient empowerment has lagged behind development of the wider system parts of the model in all health economies. They argue that is because we don’t yet measure patient empowerment or activation and what cannot be measured cannot be changed, or even managed.

A quick look at the IPSOS MORI long term health conditions 2011 report, which is the fourth in a series looking at attitudes to self care since 2005 might be thought to fully support the contention that patient involvement in care is lagging behind other aspects of system reform. Awareness and usage of training courses which may help individuals to learn the skills that would help them care for their condition remain low. Two thirds of adults with a long-term condition say they not heard of such courses with just one in 20 having used one.

In contrast, two thirds of people have discussed managing their health and care needs with a doctor or nurse in the past 12 months and almost all feel that these discussions were helpful and empowering. Furthermore, almost all of these people feel that the discussion has improved how they manage their own health.

Things are improving. People with long term conditions are now more likely to feel that they get some or all of the support they require. More of those who have been in hospital within the last 6 months received a care plan than in previous years and are now also more likely to receive instructions for taking medicines. More people now feel that they receive support to help them understand the information provided to them.

Nearly three quarters of these people feel that they received some or all of the support they required, an increase over 2009. Around four in five say they play an active role in treating their condition, in line with previous waves of the IPSOS MORI study. As before, people typically mention more information about their health condition and treatment as potentially helping them take a greater role in the care of their condition.

These findings may reflect a change in the culture of healthcare and in the attitudes and aspirations of the public, whatever the reasons it signals a change of care professional- patient interaction dynamics. The George Institute team argue that effective operationalization is critical to embedding patient empowerment as business as usual in healthcare reform efforts. Patient empowerment is an operational component of healthcare reform and must

• Be designed with recognisable, measurable, reproducible elements


• Have the circumstances in which it is and is not useful clearly demonstrated


• Have its value quantified.

They advocate adoption of a structured approach to patient empowerment based on Johnson’s model of healthcare empowerment (reference 16 in George Institute for Global Health “Realising the potential of patient empowerment for tackling chronic disease”)

Understanding, operationally what is empowering and who is empowered is complex but essential to achieving scale in empowering strategies. At the same time, such understanding is critical to achieving enough specification to allow impact and values to be measured.

Kidney care is well placed to adopt these strategies. Patient involvement is critical across the whole of the kidney care pathway but perhaps nowhere moreso than in advanced chronic kidney disease where successful engagement of patients and practitioners in the choice and preparation agenda for renal replacement therapy or conservative kidney care will, for many, determine the future patient experience and clinical outcomes. Our NHS Kidney Care programme supporting timely listing for transplantation, care planning and the conservative kidney care workstreams provide an opportunity to put patient empowerment at the centre of kidney care mutliprofessional teams working. The proposed augmented tariff for multiprofessional outpatient visits should provide resources to keep patients at the centre of careplanning. Methodologies such as those used in quantifying patient activation and those suggested by the George Institute can be used to evaluate the scale of patient involvement and study its impact.

IPSOS MORI Long Term Health Conditions, research study conducted for Department of Health

Selected graphs:

Care plan question response - page 20

Information question response - page 21

Understanding information response - page 22

Level of support - page 26

Active management - page 27

Training communications - page 31

Funding for retro-fitting heat exchanges

Congratulations to the Centre for Sustainable Healthcare (CHS) who secured funding at the recent Pitch Pledge Party Event for the promotion of retrofitting heat exchangers to kidney dialysis machines throughout the UK.

Pitch Pledge Party is a new initiative by 10:10, The Funding Network and The Guardian to match carbon cutting projects with funders. CSH's project was one of three to secure donations via this new initiative. Thanks to the support of the Green Nephrology initiative.

The funding will support a project coordinator to promote the retrofitting of heat exchangers to kidney dialysis machines throughout the UK. The device has been tried-and-tested by Fraser Campbell and Steve Milne at the Kent Kidney Care Centre at East Kent Hospitals University NHS Foundation Trust achieving a 20% cut in the machine's carbon emissions.

To learn more about the CSH go to: http://sustainablehealthcare.org.uk/

Or green nephrology: http://sustainablehealthcare.org.uk/green-nephrology-programme

Dialysis Capacity - What's needed in your patch in the next 3 years?

The census date for the Dialysis Capacity Survey is fast approaching. The survey now, in it's 3rd year, will be conducted on the 31st of October 2011.

Nationally we seem to be moving from the inexorable year on year l growth phase towards steady state. For the past 4 years, the acceptance rate onto our renal replacement therapy programmes has been stable at 109 per million of the population. No doubt that is due to a range of factors including better detection and early management of CKD, and a recognition that the 'no dialysis choice' isn't a no treatment choice. Although we don't yet have national data on conservative kidney care, I am encouraged by the high profile choice has in advance kidney care and the passion of the conservative kidney care teams up and down the country to provide high quality care and when the time comes a dignified death .

The sustained increase in live donor transplants also offers the prospect of moving from a dialysis and transplant paradigm to a transplant first model for many people with end stage renal failure. There are still a lot of variability in live donor rates and even more in pre-emptive transplant rates which suggests that our focus on timely transplant listing will deliver further quality improvements.

Mark Brady, formerly clinical advisor to Kidney Care, and now specialist registrar in renal medicine in the northern region presented MORRIS, the model for optimising renal replacement investment and services at the joint Renal Association and British Renal Society meeting in June. The model is freely available at NHS Kidney Care, so you can put your own network figures in and play with the assumptions to see the impact. MORRIS suggests that if the acceptance rate stays flat, as it has done for the last 4 years, and if transplantation continues along the same trajectory, then with the next 3-5 years the total number of people needing dialysis may fall.

There are a lot of ifs and buts and assumptions in that the total number of people needing dialysis may fall statement, but when considered alongside the reemergence of home haemodialysis, the variation in Peritoneal dialysis and the anecdotal stories of capacity led demand, the importance of good data to ensure adequate future planning is clear.

The national picture based on the 50 million population off England tells a aggregated story built from the national demographics, Renal Registry returns and UK Blood and Transplant data. It's very helpful for macro level planning but doesn’t tell the local story where individual populations may have very different needs, different capabilities maybe in place for historic reasons
and there maybe unique factors that must be borne in mind in developing local services at the unit and network level. That's why the dialysis capacity survey, which this year also begins to capture aspects of nursing capacity is so important. During the transition period as specialist commissioning of dialysis migrates to the National Commissioning Board I would say that this survey is vital.

I am pleased that we have always had a very comprehensive return and look forward to a similar response this year.

The previous surveys have been very useful in a range of areas including;

• Identifying current pressures on capacity and the varied potential growth in dialysis numbers within existing capacity across the country,
• understanding the balance of centre, satellite and home dialysis nationally and regionally,
• quantifying the plans to increase home dialysis in the future.

The survey aims to capture the national profile of dialysis service across England to help ensure kidney services can be prioritised at a national level. But using the maxim 'collect data once, use it many times' I do hope that the national collection will feed into local planning at network level. To see the details of last years survey and check out your capacity and plans compared to other networks go to:

http://www.kidneycare.nhs.uk/Library/DialysisCapacitySurveyResultsOctober2010.pdf

Give me more...

The autumn issue of the PKD Newsletter leads with results of a survey asking people specifically about the information they are given when they are diagnosed with PKD and what information they would have liked to receive.

Below is a summary of the key findings:

• 366 surveys were completed
  
• 315 by people with PKD
  
• 51 by carers / relatives
  
  
• 66% of respondents were female
  
• nearly 70% were either given ‘no information’ or ‘not enough’ on diagnosis
  
• minimal social, emotional and psychological information (including genetic counselling) was given
  
• very few respondents were told about charity or support groups by their doctor
  
• most had never been offered a Kidney Care Plan or other personalised healthcare plan
  
• there were many requests for local support groups
  
• more psychological help was felt to be needed
  

Sadly, many individuals reported, ‘I was just told I had PKD and that was all’. However, not all the responses were negative, and many positive points were made both about good doctors and the information the PKD charity provide.

Clinical Networks and Senates

Kidney care clinical networks emerged around the turn of the century to facilitate integrated care across the kidney patient pathway, spanning the range of different healthcare sectors. The presence of networks in the NHS, indeed in renal medicine and in particular transplantation, was not new as healthcare professionals have always worked together; but in the managed clinical networks that emerged after Sir David Carter's review of acute services in Scotland in 1999 patients, carers, management and commissioners were brought into the professional gatherings. The managed aspect of the role of networks became more prominent and with that the requirement for greater accountability.

Kidney care networks have been described as 'linked groups of healthcare professionals and organisations, from primary, secondary and tertiary care working in a coordinated manner, unconstrained by existing professional and organisational boundaries to ensure equitable provision of high quality effective services'. There has been no single model or master blueprint, each network developed according requirements and challenges, but all are virtual rather than statutory and the best have arisen out of an identified need for service change rather than being imposed for organisational reasons.

In early years of the kidney care networks, the 12 core principles advocated by NHS Scotland formed the basis of the governance and agility to balance clarity of purpose with flexibility of response.

The NHS Futures forum recognised the role of networks and recommended that clinical networks should be strengthened and embedded in the new system. This was accepted by the government and Kathy Mclean, until recently the Medical Director of NHS East Midlands and now Clinical Transitions Director at the Department of Health is leading the work on clinical senates and networks. Commenting on a recent workshop Kathy said, 'I was very pleased with the energy in the room, the support for the role of networks and the desire to make improvements. There were clearly some key themes coming out from the session, including the potential role of networks leading large scale change processes across pathways of care and coordinating complex pathways of care where a lack of a network could lead to harm'. Read the Kings Fund Workshop Report here.

The review will define the role of clinical networks and review their range, function and effectiveness. It will:

• Map the current patterns of networks and assess the current level of resources associated with them;
• Define what is meant by 'network' and the role of potential models in the new system;
• Propose which clinical and professional areas require formal network.

Kidney care networks place an emphasis on partnerships, information and relationships to achieve higher quality care and better outcomes often through more integrated care being delivered by the multi-professional, multi-sector team. This is in contrast to the older 'hub and spokes' model where it was often perceived that the 'hub' (as the title suggests) was where all the action took place, and the 'spokes' were considered relatively minor service providers in support of them.

The lessons from the last decade and the listening exercise have made clear how important clinical advice and leadership are in delivering improvements in health care outcomes. See the letter from Kathy Mclean and the details of how to get involved. http://healthandcare.dh.gov.uk/category/senates/

Intergrating Care - Working smarter not harder

How do we integrate care between the... ologies, between primary and secondary care, between expert patients and healthcare practitioners and between health and social care is the big question of our times. Lots of big brains are working on it and not a week passes without a report or commission providing principles and recommendations. Examples directly relevant to UK practice have been thinner on the ground.

So I was delighted to see that Hugh Rayner and colleagues have published their renal diabetes system from Birmingham that we have heard so much about at meetings in the past 4 or 5 years.

Diabetic nephropathy is the most frequent primary renal diagnosis for patients starting renal replacement therapy. For many patients, loss in kidney function could be avoided by earlier treatment.Heart of England NHS Foundation Trust improved this situation by redesigning the traditional system of primary and secondary care. The Trust introduced a disease management system that linked a diabetes population database to the laboratory database. A nephrologist identified patients with low or deteriorating estimated glomerular filtration rate (eGFR) on a weekly basis. The nephrologist then shared management advice with the patient's diabetologists and primary care physicians. Savings of £48,000 per 100,000 population were achieved because the number of patients requiring dialysis was reduced.

Dr Hugh Rayner, renal consultant, explains in Eyes on Evidence: "The redesigned service reduced the rate of loss of kidney function in people with diabetes mellitus so that fewer people developed kidney failure and needed dialysis treatment. Our model of care includes a specialist diabetes kidney clinic and patient education to support self-management including home blood pressure monitoring.

"Patients are written to personally after every consultation and this is copied to the patient's GP. Implementing this system has reduced the number of patients attending clinic in person because many can be followed remotely from their eGFR results. There is now no waiting list for diabetes renal consultations. By making better use of the information in every pathology laboratory database, this model could be implemented across the UK.

"Visit NHS Evidence for more details of this and other QIPP examples.

Exercise as part of kidney care

The important role of exercise in the health and wellbeing of people with long-term conditions is often overlooked or relegated to a few encouraging nonspecific remarks at the end of a consultation. The publication of two systematic reviews and meta analyses of exercise training provides a useful prompt and reminder to both clinicians and patients about the value of exercise as part of patient care.

Coincidentally the need to take a proactive whole system approach was brought home to me last week when I visited the York kidney service where there are plenty of exercise machines available and the philosophy to encourage all to participate as much, or as little, as they wish. The dialysis unit is strategically placed just down the corridor from the physiotherapy gym. Staff encouragement, easy availability of exercise “bikes”, positive comments from other patients and closeness of the physio gym has resulted in most who are able responding to the exercise challenge … and feeling better! In York I was also struck by how few dialysis patients needed antihypertensive medicines. That might be partly due to the high rates of exercise but also by using bio impedance to measure fluid overload and giving authority to dialysis nursing staff to reduce dry weight targets, the team have developed a system that seems to work better than most at getting and keeping patients on haemodialysis at their ideal dry weight By contrast, any increase in dry weight needs a doctor’s review and sign-off. Remarkable figures – well done the York unit.

A Cochrane review, Exercise training for adults with chronic kidney disease
by the Karolinska Institute concluded that there is a good evidence base showing benefit from exercise for all patients with Chronic Kidney disease (CKD) (whatever their stage).

Forty-five studies, randomising 1863 participants were included in the review. Thirty two studies presented data that could be included in the meta-analyses. The review showed that regular exercise training significantly improved physical fitness, physical functioning (eg walking capacity), and health-related quality of life in adults at all stages of CKD including those who were a receiving dialysis or had a kidney transplant. Beneficial effects were also seen on other outcome measures, such as blood pressure control.

This systematic review and meta-analysis presents evidence-based data for clinicians and patients on which type of exercise regimen (type of exercises, intensity, frequency and duration of exercise) should be used, in which settings and patient groups to optimise the training regime and improve outcomes. The results should be reviewed and used by individual clinical teams working with patients to consider how to implement exercise as part of the care plan for people with kidney disease . This information should encourage patients with CKD that there is scientific evidence for the beneficial effects of regular exercise training. It should identify who will benefit from which exercise intervention and allow patients to tailor their exercise regime to their needs and goals.

Exercise training specifically in haemodialysis patients was also the subject of a systematic review and meta-analysis from Australia; Exercise training in haemodialysis patients: A systematic review and meta-analysis. These authors reached the same conclusions as the Cochrane Group. Exercise training is safe and imparts large improvements for patients on dialysis.

Patient experience: how to measure it?

“No decision about me without me” has put the patient firmly the centre of the many hundreds of millions of individual clinical encounters in the NHS each year and patient experience is now one of the 5 domains of the Outcomes Framework. Up there with amenable mortality, long-term conditions, rehabilitation/recovery and safety; patient experience is set to become a cornerstone of quality of care. So how do we measure it? What counts, what’s important to the patient?

Already, patient feedback tools and services to rate GPs are increasingly available, not least on NHS Choices which attracts 5.7 million users per month - showing how channels for knowledge and comment are fast becoming central to how service users appraise their care choices.

Organisations such as NHS Direct have adopted the Net Promoter Score (NPS) which is widely used across many industry sectors. It focuses on understanding whether a patient would or would not promote the service they receive. NHS Direct found the system simple to deploy, simple to understand and simple to respond to.

At first glance, it may seem more appropriate to customer care rather than clinical encounters but there are many ways in which it’s relevant to healthcare providers. A clear understanding of whether a patient would or would not promote a provider based on a service they received should enable provider organisations and clinical teams within those organisations to identify where key service provision is lacking and to implement steps to address these issues.

For example, a detractor score could be the result of a patient returning to clinic to review various results and investigations that then turn out not to be available. There could be a failure to communicate. They may have to travel a long distance to have intravenous iron that could quite easily have been given in their local community. The specific response allows the provider team to then look into the issues and address them to avoid the same situation arising again.



In summary, net promoter scores is based on the principle that every service’s users can be divided into 3 categories: promoters, passives and detractors. By asking one simple question “how likely is it that you would recommend the service to a friend or colleague?” you can track these groups and get a clear measure of a service’s performance through its users’ eyes. Results can be used for the purpose of tracking performance in individual services over time or for comparison across similar services. The NPS questions can be used in a face to face, remote access such as telephone or self service such as web environment. Users respond on a 0-10 point rating scale and the categories are as follows:

• Promoters (score 9-10) are loyal enthusiasts who will advocate on behalf of the service.
• Passives (score 7-8) are satisfied but unenthusiastic customers who are vulnerable to competitive offerings.
• Detractors (score 0-6) are unhappy customers who can damage your brand and impede growth through negative word-of-mouth.

To calculate NPS take the percentage of customers who are promoters and subtract the percentage who are detractors (the calculation ignores passives).

If you choose to use this in your kidney service or are using something similar, do let me know.

Green Nephrology needs your vote!

The Green Nephrology project to retro-fit heat exchanges to kidney dialysis machines is one of 3 projects shortlisted for the final of the Pitch Pledge Party. The Centre for Sustainable Healthcare will be presenting the project at the event taking place at The Guardian Newspaper offices in London next Monday (10 October) and needs your support – go to the website to check out the three finalists and cast your vote.

This is a new 10:10 initiative designed to bring practical carbon-cutting projects together with donors looking to support the fight against climate change at ground level. The work is based on the excellent case study carried out by Fraser Campbell and Steve Milne at Kent Kidney Care Centre, East Kent Hospitals University NHS Foundation Trust, together with Paul Stevens and Andrew Connor, the NHS Kidney Care Green Fellow at the time.

Find out more about green nephrology, this project and the dragons den pitch Rachel Stancliffe will be making at the Green Nephrology website.

Lost and found

Many people in the kidney community were disappointed when the NICE Chronic Kidney Disease Quality Standards were published and the standard on conservative kidney care that had been trialled was nowhere to be found. Some of us even had to change our slides!

Well, as the Old Testament parable goes, there is nothing better than finding something that has previously been lost. The NICE Quality Standards on End of Life Care certainly fit that bill. Clearly it makes a lot of sense for end of life standards to cut across individual disease groups. The issues of people, families and carers, and largely for the clinical and social care professionals involved, are mostly generic.

These quality standards give us opportunity as a whole NHS to improve the infrastructure for end of life care in England. Getting that right will be a major step in the right direction for conservative kidney care by providing a receptive culture and systems of care to improve experience for patients whatever their underlying conditions.

1. People approaching the end of life are identified in a timely way.
2. People approaching the end of life and their families and carers, are communicated with in a timely, sensitive and honest way that is responsive to their needs and preferences.
3. People approaching the end of life are offered comprehensive and regular assessments, which include the opportunity to discuss and document their current physical, psychological, social and spiritual needs and preferences.
4. Carers and families (including children) of people approaching the end of life have their own needs assessed and regularly reviewed, and are offered support appropriate to their needs and preferences.
5. People approaching the end of life and their carers and families have timely access to information in an accessible format, appropriate to their individual needs and preferences.
6. People approaching the end of life are offered the opportunity to help develop and regularly review a personal care plan that sets out their needs, preferences and decisions in relation to all aspects of current and future care and treatment.
7. People approaching the end of life have their physical and psychological symptoms safely and effectively managed in a timely way, at all times of day and night, appropriate to their needs and preferences.
8. People approaching the end of life have access to timely personalised support for their social and practical needs, which is appropriate to their preferences, and which maximises independence and social participation for as long as possible.
9. People approaching the end of life and their carers and families receive emotional, spiritual and religious support appropriate to their needs and preferences.
10. People approaching the end of life receive consistent care at all times of day and night, that is coordinated effectively across all relevant health and social care organisations, and which is delivered by practitioners who are aware of the person’s current medical condition, care plan and preferences.
11. People approaching the end of life being cared for in their usual place of residence, receive timely, safe and effective care appropriate to their needs and preferences at all times of day and night.
12. People approaching the end of life being cared for in hospital, receive timely, safe and effective end of life care appropriate to their needs and preferences at all time of day and night.
13. People approaching the end of life who experience an unexpected crisis at any time of day or night, receive prompt, safe and effective urgent care appropriate to their needs and preferences.
14. People approaching the end of life who may benefit from specialist palliative care, receive this care in a timely way appropriate to their needs and preferences, at all times of day and night.
15. People approaching the end of life who need to be moved, are transferred in a timely, safe and effective way to enable them to receive care in the place most appropriate to their needs and preferences.
16. People in the last days of life are identified in a timely way and have their care coordinated and delivered using a proactive holistic plan, which is individualised to their needs and preferences, and which ensures timely access to, and administration of prescribed medication.
17. Carers and families who are newly bereaved are communicated with in a sensitive way and receive timely verification and certification of the death, information that includes details of any possible coroner involvement, and practical support appropriate to their needs and preferences.
18. People closely affected by a death have access to emotional and bereavement support appropriate to their needs and preferences.
19. Health and social care workers are competent in the knowledge, skills and attitudes necessary to provide safe and effective care for people approaching the end of life.
20. Generalist and specialist services providing care for people approaching the end of life have a multidisciplinary workforce sufficient to provide safe and effective care.

Have a further look at the draft questions. Each standard has definitions, numerations, denominators, audit measures and, what I found really helpful, explanations in plain English.

Consultation has now closed and the final quality standard is expected in November 2011.

Vascular Access: for many the single most important

….. modifiable factor that can improve experience and outcomes.

The National Kidney Care Audit Vascular Access Report 2011 was published today. This vascular access audit has not been easy to conduct. We had policy drivers and widely endorsed clinical audit measures developed by the Renal Association and Vascular Society of Great Britain and Ireland but, the way local systems are configured, how data is recorded and where it is held, differed between units. In addition, the way teams share responsibilities between disciplines and over time varies considerably. In total 60 of a possible 63 kidney units participated and the quality of the returns was high. This is testament to the leadership and skills of the audit team and the dedication and hard work of the individual kidney care teams in each of these units. They all recognise both the importance of best possible access as a modifiable factor that can improve patient experience and outcome and the central role national comparative audit plays in driving up quality and adding value to direct clinical care.

Creating vascular access for dialysis is a complex process. Planning for dialysis is both culturally and technically challenging. The timing of conversations, decisions, consent and surgery need to take into account the views, attitudes and aspirations of the individual with progressive kidney disease; the often unpredictable rate of decline of kidney function and the coordination of imaging, surgery and medical teams. Successful maturation of an arteriovenous fistula requires care and nurture. There is as yet no standard recipe for monitoring and fistula management to guarantee longevity of access. We do however increasingly recognise the importance of team work – patient, dialysis nurse, nephrologist, radiologist and surgeon, in achieving this goal. Good outcomes therefore require both reliable systems and attention to the human factors upon which success is based. No wonder the audit had been difficult to deliver.

But deliver it has. This report provides valuable insights for all participating kidney care teams and the results are the basis for continuing to involve local patients in quality improvement; small tests of change within units for discussion, debate and sharing best practice within and between kidney care networks providing a platform for future work including the routine collection of dialysis access information by the UK Renal Registry. Improving vascular access is an end in itself. Even more than that, a focus on preparation and choice in the 12 months before renal replacement therapy should also facilitate patient engagement in shared decision making and care planning and accelerated rehabilitation for those who commence dialysis as an emergency. It therefore has the potential to increase live donation and pre-emptive transplantation, promote patient preference in type and place of dialysis and support better conservative kidney care for those who choose the “no dialysis” option. It would be a perverse unit that did not capitalise on the added value opportunities all the hard work on vascular access presents. I look to the kidney services to use this knowledge now to improve care for your patients this year. Also to retain the audit’s know-how so that future patients can benefit from all the efforts that have gone into it. For many people with end stage renal failure better vascular access is the single most important modifiable factor in improving outcomes. Better access leads to fewer infections and as this reporting shows directly correlates with a reduction in the burden of dialysis. This audit is a big step in the right direction. All involved should be congratulated. I am truly impressed by the coverage gained, but don’t be complacent. Getting the best vascular access for every single haemodialysis patient remains a challenge but some teams have shown it is achievable.

Key Findings

• 60 out of 63 units in England, Wales and Northern Ireland took part in the audit which included 2,078 patient records.


• Late referrals (less than 90 days from seeing a renal physician to dialysis) accounted for around one quarter of patients nationally, although this varied across networks.


• At first dialysis, 39 per cent of patients had a tunnelled line, 20 had a non-tunnelled line, 1 per cent had an arteriovenous graft (AVG) and 40 per cent an arteriovenous fistula (AVF).


• After 3 months, the majority of patients on AVG, AVF and tunnelled lines were using the same access. Those who started on non-tunnelled lines were more likely to have moved to another type of access (most commonly as tunnelled line – 67 per cent)


• Late referrals were less likely to have had definitive access (i.e. AVF or AVG) at first dialysis and were less likely to have been referred to a surgeon.


• 16 per cent of haemodialysis patients had a bacteraemic episode in the six months following first dialysis.


• Bacteraemias were more common in patients on venous catheters compared to definitive access – 24 episodes per 100 patients for an AVF, 45 for a non-tunnelled venous catheter and 33 for tunnelled catheters.

Well done to all concerned.

Vascular access e-seminar – listen again

If you missed the e-seminar we held about the 2011 National Kidney Care Audit Vascular Access Report, you can now listen again on our website.

Dr Richard Fluck, consultant nephrologist at Royal Derby Hospitals and clinical lead for the audit, presented the e-seminar, giving a summary of the key findings from the audit and answering questions from delegates.

The audit report, which was launched earlier this month by the NHS Information Centre, examines the methods and timeliness of vascular access for kidney patients requiring haemodialysis. It looks at those patients commencing dialysis between 1st January and 30th June 2010, and builds upon the previous reports by using data flows from other sources to provide information on hospital episodes and Healthcare Associated Infections (HCAIs).

Dr Fluck’s slideset and a full audio recording of the presentation and discussion are available to download. Go to: http://www.kidneycare.nhs.uk/_Eseminars-Pastevents.aspx

Ask 3 questions

“Sometimes there will be choices to make about your healthcare. If you are asked to make a choice, make sure you get the answers to these 3 questions:

What are my options?
What are the benefits and possible risks?
How likely are these risks and benefits?”

These are the 3 questions that the MAGIC projects are promoting. MAGIC stands for “making good decisions in collaboration” and is a Health Foundation implementation programme for shared decision making that has been running in Newcastle and Cardiff over the last year. There is lots of evidence from many different countries and across many clinical areas that patients want more involvement in decisions about their care and that greater involvement results in better experience and outcomes. Recently, the Care Quality Commission in England patient surveys have shown that 48% of inpatients and 30% of outpatients want more involvement in decisions about their care. A Cochrane review in 2009 found that decision support improves knowledge and leads to a more accurate understanding of risk perception as well as increasing participation and comfort with the decisions. Such an approach leads to fewer patients being undecided and improves adherence to medication.
I was privileged to be invited to the Health Foundation MAGIC site visit to Newcastle last week. Driving to Piccadilly station I was thinking “it’s nice to be on a different train”. Views across the North Yorkshire moors, Northumberland and the Angel of the North are gorgeous. I assumed I would be spending the journey doing battle with my inbox when to my delight I bumped into Sir John Oldham who is a general practitioner from Glossop but also much more. John is the Department of Health Quality, Innovation, Productivity, Prevention lead for both long term conditions and acute care. We travelled up together with Alf Collins (Consultant in Pain Management & Vice Chair Clinical Ref Grp for NHS SW). Alf had driven up to Manchester from Taunton the evening before! “Making Shared Decision Making a Reality, no decision about me without me” the publication by Alf and Angela Coulter was released the day before and was receiving quite a lot of media attention. So we had a great journey up, fruitful conversation and lots of learning. A great way to start the day.

The highlight without doubt was, however, the visit to Dave Tomson’s surgery where I saw the 3 questions in use and sat in on a shared decision making skills workshop. It struck me how far ahead primary care is of hospital practice in terms of ensuring the skills needed to talk, understand and listen to patients are well taught. Clinical encounters may only be 10 or 15 minutes, or 7 minutes, but they’re full of body language, unsaid messages, anxiety and anticipation in addition to the dialogue. They can also result in confusion and misunderstanding. Offering choice, explaining options, providing decision support, eliciting preference and achieving good decisions is a real skill. Like all skills it needs practice before it’s added to our repertoire of “automatic” skills that “just happen”.

Back at the Royal Victoria Infirmary in Newcastle we heard from Richard Thompson (Professor of Epidemiology and Public Health) about shared decision making in breast surgery, obstetrics and urology and discussed the importance of leadership, learning sets and team engagement in addition to the clinical skills. The emerging lessons from the Newcastle micro-system highlighted some of the NHS wide barriers and disincentives that need to be addressed if we are to build on these achievements and to secure sustainability.

Shared decision making is much more than patient decision aids. We need to embed shared decision making within clinical pathways and to demonstrate the value to both patients and clinicians. The Health Foundation projects are using shared decision making with quality improvement methods to drive up patient activation, measure patient experience and improve quality. I am looking forward to my next visit already. I don’t think we need to wait until then to make the 3 questions OK in every surgery and clinic in the land.