Wednesday, 30 November 2011

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.

Thursday, 24 November 2011

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.

Tuesday, 15 November 2011

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.

Thursday, 3 November 2011

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:
• 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.

Wednesday, 2 November 2011

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”.

Tuesday, 1 November 2011

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.

      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