Dignity day - what are you doing about it?

"It might well be that the difference people make individually is a mere ripple on the surface of our care system, but each of those ripples added together create a wave, a social movement, and if this makes life better for some - then it has to be worthwhile."

Sir Michael Parkinson, Dignity Champion

Dignified and humane care is every patient’s right. Without it patients suffer in terms of their outcomes and their experience and memories of care. The Ombudsman reports, the Patients Association report and The Mid Staffordshire Francis report have demonstrated that the absence of humanity and kindness have disastrous consequences. Many hospitals have now taken action and are changing and improving care.

Dignity Action Day is taking place on 1 February 2012 to raise awareness of the importance of dignity in care. The day is a reminder to all health and social care staff as well as the public that upholding people’s right to dignity is everyone’s responsibility. Undignified care occurs most often when the needs of the patient are not put first. As soon as care becomes task driven rather than person-centred, there is a failure to deliver ‘do as you would be done by care’.

Please take the time on 1 February 2012 to reflect on how you could improve the way in which your patients are treated and take action with your team locally. Do you take enough time to listen to patients and their families? Do you take, record and share full life histories? Does your Trust or renal unit have a Dignity Code? Do you know who your local dignity champion is and have you invited them to the renal unit and wards? Do you challenge ageist practice? Does your Trust take Acute Kidney Injury (AKI), that is predominantly a condition that affects the elderly and at risk population seriously?

Learn more about the national Dignity in Care campaign and for resources and examples of best practice.

Sharing Knowledge: The New Power

One of the pleasures on a cold winter’s night in January is to either scramble around to get the final data and analysis to write an abstract or sit back with a stack of them to mark for one of the forth-coming annual national meetings. It has been my pleasure to do the latter for a number of years, and this year I was invited to mark some of the British Renal Society Service Delivery Quality and Innovation papers. What quality!

Looking back over the past few years there has been a steady and sustained increase in the number and quality of the research and improvement projects submitted to the BRS conference under this category from 20 in 2007 to a whopping 51 this year.

What a board range- something for everyone. Simulation, quality improvement methodology in early CKD and dialysis, mainstreaming exercise, virtual clinics, video clinics and novel ways of providing clinics and support for young people, patient empowerment, peer support, new models of care, rehabilitation- the list goes on.

In these times of austerity, our national BRS and Renal Association meetings need to add value. I have no doubt they are going to and I am looking forward to learning more about these and other topics in Manchester in May and Gateshead in June. Hope to see you there.

Futures Forum Plugs Renal Patient Review

The Futures Forum was set up to advice on the development of the health service so that patients will be at the centre of every decision, and quality will be the organising principle for the NHS published its second phase report last week.

Steve Field and colleagues are leading the review and have been up and down the country meeting thousands of members of the public, patients and service users, carers, health and social care professionals and managers in a variety of settings.

They heard very clearly that people want more control over their health, through better information, better communication, and a louder voice. There is a strong consensus that “it’s the patients data”, not the “systems data”. The huge frustration with the obstacles to capturing and sharing information that gets in the way of delivering high quality, integrated care were made evident time and again. There was a consensus that current information governance procedures do not get the best balance between protecting patient confidentiality and sharing information to ensure high quality care.
There was a plea for the NHS to embrace and use patient generated comments.

Jeremy Taylor and David Haslam wrote the section of the report highlighting the importance of information and they concluded three things. Firstly, the health and social care system must use and communicate information much more effectively- we should regard poor information as poor quality care. Secondly, the barriers to making the “information revolution” a reality are more cultural than technological. Here, the NHS must recognise that: information is an integral part of the therapeutic process; communication matters; records belong to the patient; responsibly sharing data is vital for patient safety and continuity of care; consent matters; professionals must know how well they are doing and how they can improve; and openness and transparency are vital. Finally, all of this is possible and is carried out somewhere, but adoption remains patchy.

The report citied several examples of patient access to their primary care records. The government has recently given a commitment that all patients will have access to their online GP records by the end of this parliament. The Future Forums Report drew particular attention to the fact that kidney patients are given direct online access to their hospital records, through Renal Patient View (RPV) and commended this UK project, for the partnership between patients and clinicians.

RPV is the future; it provides online information about diagnosis, treatment and latest results. Patients can share this information with anyone they want, and it can be viewed from anywhere around the world.

Of course, the concept of patients owning their own records is not a new one. Maternity records have been written for patients and owed by them through the duration of their pregnancy for over 20 years now. Websites such as Patients Know Best already offer clinicians the opportunity to give patients access to their medical record, and every kidney unit in the United Kingdom should be able to offer RPV to people with kidney disease.

A little birdie also, tells me that in the forthcoming national CQUIN scheme, RPV will be one of the quality markers.

Variation - The other side of the coin

Unbeknownst to me whilst I was extolling the virtues of looking for variation to identify where improvements might be likely to succeed, in another part of the blog-o-sphere Professor Alan Maynard was penning his commentary on the same topic for Health Policy Insight . Tess Harris chair of the PKD sent it through to me – Thanks Tess.

Suffice to say that he has a different opinion from me. Professor Maynard points out that productivity variations are universal. I was pleased to see that he started at the same place as me from the famous Glover work, about variations in tonsillectomy. The interesting thing about tonsillectomy is of course that very few people ever benefited from a tonsillectomy – certainly high rates were never good!! Thankful the rates have plummeted over the past 50 years.

Maynard makes some good points, do click and read it , but I still think if I had kidney disease I would rather be managed in a unit with higher rates of live kidney donations, higher rates of arteriovenous fistulae, lower rates of MRSA infection and higher scores on patient activation. That is also the sort of unit I would like to work in. The trick is to measure the right thing.

Stepping into the future

You would have to be living in deepest outer space not to have noticed that the NHS is changing. Indeed Sir David Nicholson, Chief Executive of the NHS has famously gone on record to say that the changes are so big they can be seen from the surface of Mars! So what will this mean for kidney care and what will it mean for kidney patients and there families?

Health care professionals will see the changes to the structure of our health system and feel the financial challenge. Patients will want us to deliver on the quality promises. The causes and consequences of kidney disease will of course remain unchanged over this short political timescale, the opportunities for improvement - to make a difference for individual patients hasn't changed. They have in fact been given a high profile by the relentless focus on quality as the only organising principle of the NHS.

The pendulum is swinging from a predominantly hospital led approach to one that puts more emphasis on primary and community care. Kidney disease, and I include much of the acute kidney injury in that, has the features of a classic long term condition. As such, much of what we, the kidney community, want to do and achieve are high NHS and government priorities. Long term conditions rarely occur in isolation. That's also true for kidney disease - often complicated by hyper-tension and vascular disease, or the results of conditions such as diabetes. Let's also not forget the high incidence of that treatable, but often unnoticed and at times neglected condition, depression in our patients. We know many of the risk factors for kidney disease. Clinical trials have identified some of the ways in which we can modify and sometimes even halt progression. Here in this second decade of the 21st century the individual stories of people starting dialysis often tell of missed opportunities to prevent kidney disease. In 1 in 3 patients who develop AKI it was both predictable and avoidable - good basic care of the acutely unwell can prevent AKI. There are now over 2 million people in the UK on primary care, CKD registers. Kidney disease is now recognised as a common, harmful and treatable condition. It is as much the province of the generalist and acute teams as the renal multi-disciplinary team. The better early detection and management of CKD using the principles and tools of chronic disease management, a big focus of our NSF, the fewer the missed opportunities to prevent or slow down the development of complications in people with kidney disease.

The whole NHS system is being aligned to the outcomes framework. This sets 5 high level goals – reduction of avoidable mortality, improvement in long term conditions, better recovery and rehabilitation, patient experience and safety.

Each of these domains of the outcomes framework is relevant for people with kidney disease to a variable degree depending on there place along the pathway and their individual circumstances. We must now consider quality of kidney care, delivered in your ward, renal unit, out patients and at home under these 5 headings. The NICE Quality Standards for CKD provides the detail of what we must measure for the population each kidney unit cares for, but it is the individual experiences and outcomes from every encounter between your patients and the care teams that is really important. And it is not just the clinical context – it is as much about the respect that we show and dignity we give. Quality also means helping our patients in what is often a chaotic and confusing system. Chaotic care leads to missed opportunities, unnecessary expense and poor outcomes. A man from Whitehall isn’t going to sort out chaos for us. More likely a woman in clinic, on the ward, or from the social work team can help our kidney care multi-professional teams improve our own local systems. We are the system – our culture, values, attitudes and behaviour determine the quality of patient experience and even the clinical outcomes. There is now good evidence that the better teamwork and better quality care plans, results in less hospitalisation and lower mortality for dialysis patients.

At the centre of the team is the patient. No decision about me without me should be our motto for patient involvement in choice, decisions about transplantation, home dialysis and conservative kidney care. We should encourage our patients to ask 3 questions;

1. What are my options?


2. What are the benefits and possible risks?


3. How likely are these risks and benefits?

And we should be prepared, that might need training such as role play to answer these questions honestly. You can start that tomorrow.

Over the next year getting the preparation and choice for renal replacement therapy right for as many patients as possible remains one of my key priorities. The NHS Kidney Care programme to support care planning and timely transplant listing is providing a stimulus for improvement. I also expect that shared decision making tools such as personal decision aids be available online, and/or with individual coaching will be with us soon. These will become a standard feature of our advanced kidney care clinics and multi-professional team working. But don’t wait for that to put the next patient you see right at the centre.

Unwarranted variation: the engine of improvement

J. Allison Glover, a medical officer in the pre-World War II Department of Health is credited with identifying unwarranted variation by discovering that a child’s chances of undergoing tonsillectomy depending on which school they were attending. Glover examined the effects of overcrowding, poverty, bad housing and climate but concluded that the major source of variation was differences in the system of healthcare, in this case the medical opinion of the school health officer responsible for referral for surgery. We see similar variation today in the modality of renal replacement therapy across the country depending on the attitudes and philosophy of the kidney unit rather than the choice of patients.


Jack Wennberg, of the Dartmouth Atlas fame took that idea and 30 years later looked in detail at rates of a whole range of interventions in two Vermont towns. Jack found big variance in many procedures and interventions – but there was nothing to suggest that the underlying illness rates of the two populations were any different. Variance research was founded and with it the science of healthcare delivery.


The second addition of the NHS Atlas of Variation builds on this history and was published just before Christmas. It highlights a range of conditions across the whole spectrum of health and picks out acute kidney injury (AKI), rate of kidney transplantation from living donors and deceased donor transplant rates for close scrutiny.



Admissions attributed to AKI have been rising in recent years, possibly as a result of increased awareness, although the results of epidemiological studies show rising prevalence as well. The management of AKI is resource intensive, costing the NHS £600M per annum and adding 4.7 days to the mean length of stay. For PCTs in England the rate of admissions attributed to AKI for all emergency admissions to hospital ranged from 0.4 to 2.7 per thousand (a 7-fold variation). This degree of variation could reflect the distribution of AKI risk factors in the community, levels of awareness of AKI and the organisation and management of care for people who are acutely unwell. The Atlas team identify action for commissioners

• To implement an acute care CQUIN (see NHS Kidney Care AKI resource pack)


• To ensure that the AKI care pathway is identified in every setting where people with acute illness are managed.


• To tackle AKI in QIPP plans.

For clinicians it is important to focus on improving the basic care of the acutely unwell including:

• Recognising illness severity and deterioration


• Prompt resuscitation


• Timely management of infection and sepsis


• Safe prescribing


• Careful attention to hydration and nutrition.

For managers it is important to:

• Implement an electronic system for AKI alerts in laboratory reporting systems


• Audit AKI outcomes and quality of care


• Implement the national confidential enquiry into patient outcome and death (NCEPOD recommendations on AKI)

The number of living donor transplants performed has increased markedly over the last 10 years and, despite a fall of 2% in living donor transplants in 2010-11, living donation represents more than 1/3 of the total kidney transplant programme, it’s integral to saving people’s lives. The overall rate of kidney transplant from living donors for England in 2010-11 was 16.5 pmp we need to make sure that this option is being explored early and offered widely to all those who can benefit from living donation.
The rate of kidney transplants from deceased donors per million population ranges from 14.7 to 29.2, a twofold variation.

One reason for variation is differences in regional demography, particularly the proportion of black and minority ethnic (BME) groups in the population who are three times more likely to need a kidney transplant but only 1.2% of people from the South Asian and 0.4% of people from the black communities have joined the organ donation register (ODR).

Commissioners and providers are encouraged to support the work in acute hospital and foundation trusts of donation committees, clinical leads in organ donation and specialist nurses for organ donation, all of whom are working to ensure that organ donation becomes a “usual” event. We also need to find better ways to engage with our local BME communities to raise the profile of kidney transplantation as was recently emphasised by the All Party Parliamentary Kidney Group at a reception at the Houses of Parliament .