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.