Evenyone counts - even people with aHUS?

The planning guidance for the NHS in  2013/14  is called “Everyone Counts“.  It sets out  ambitions to deliver on the NHS constitution and focuses on outcomes  rather than process measures using the five sections of the NHS outcomes framework – reducing premature mortality, improving long term conditions, enhancing recovery from acute illness, patient experience and safety.  To quote from the opening paragraph   “The Challenge facing the NHS is to become truly patient-centred, where patients participate in designing services and are able to exercise choice as customers, whilst seeking always to ensure that no community or part of a community gets left behind“.

Well I hope that people with atypical haemolytic uraemic syndrome (aHUS ) count.  Largely genetic in origin, aHUS is a rare, progressive, life-threatening and incurable complement disorder which affects mainly the kidneys.  It occurs when a faulty gene, known as a mutation, is triggered, often by an external factor, which causes uncontrolled over-activation of the complement system. Complement is a normally well controlled feature of the body’s immune system whereby certain proteins actively counter bacterial and viral infections in the blood by restoring damaged cells and clearing debris. But when the complement system acts in an uncontrolled fashion, it damages rather than restores the red blood cells. This restricts their ability to pass through the small blood vessels in the kidneys which causes blockage and inflammation. Unchecked, this may lead to kidney failure.

I am not sure the public or indeed our policy makers appreciate the impact of kidney failure on individuals and families . A year or two ago  I found myself chatting to a single mum about the same age as my daughter. She had never been on holiday with her 8 year old daughter! NEVER! The young lady had developed  aHUS shortly after her pregnancy and was on dialysis.  She had a sister who wanted to donate a kidney but  she couldn’t be transplanted because of the high risk that the aHUS would recur in the transplant . Being “stuck” on hospital dialysis as she put it meant she was unable to get away for a break – ever! Her sister did take her niece,  the daughter,  away with her own family and the patient explained that seeing the photos gave her great enjoyment.  The story just came out in conversation as we were queuing for lunch . The young lady didn’t make a big deal of it but I was left feeling very sad that she hadn’t yet experienced that fun part of being a parent and seeing your children paddle in the sea or race you along the sand . I was also in two minds whether or not to speak about eculizumab a new drug that has been recently found to practically “work miracles” in aHUS by restoring the balance of complement in the kidney and preventing kidney damage occurring because it wasn’t yet generally available on the NHS and was still awaiting some final trials before gaining approval as a first line treatment for aHUS.  It crossed my mind at the lunch counter that I didn’t want to raise hopes unnecessarily but we did have that conversation because I felt the data that the Newcastle research team, who have been researching aHUS for quite some time,  had presented at the Renal Association meeting some weeks before was so completing and was pretty sure that the FDA in the USA and the European Medicines agency would soon approve the treatment.

Well the authorities have now approved the drug but unfortunately we do seem to be dragging our feet in making it available to the few patients and families who could benefit.  The disease is ultra-rare, at the last count in 2010 affecting about 170 people in UK, of whom 140 are thought to be in England. Some 10-15 new cases present each year in UK.  There are about 50 patients like the lady I was chatting to, people who are locked into lifelong dialysis who will never receive a transplant until eculizumab can be used to protect their new kidney .

The aHUS patient support group and the wider kidney community had been hoping the drug would be available from January this year but the  Department of Health ducked the issue deciding instead  to defer national funding and refer the case to NICE for further consideration of the affordability before reporting to the new commissioning board that is now called NHS England.  Well I hope that NHS England does not let the kidney community  “get left behind “  to quote the new planning guidance . The evidence for benefit is clear, yes the costs are high but the benefits are  truly life changing for people and families with aHUS . If we, the system, get our act together its quite a reasonable aspiration to expect a successful live donor transplant for the lady I met and a holiday in the sun (wearing sun block of course) shortly thereafter. One could also wonder “how come she hasn’t been able to get away for a break or a holiday while on dialysis“  but that’s another even longer running story that for  now I will leave for another day .

Everything's Changed; except the challenges

I am reminded this morning as the new structures of the reformed NHS take up the reins of the opening sentences of A Tale of Two Cities by Charles Dickens "It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness … " . To paraphrase, Dickens concluded that, in short the period was much like any other period; An age of hyperbole. And we are not short of that in the health system. For all the rhetoric and all the ink used in describing the NHS changes that apparently can be seen from Mars the challenges in clinic this morning will be much like those last week and I dare say those next week .

For those of us working in the kidney world quite a lot of what we need to do remains the same . Shared decision making was on the agenda last term and it remains a goal to strive for . I was doing some spring cleaning over the Bank Holiday weekend and came across Rob Elias and Eleri Wood from Kings item (link below).  Isn’t it great to find such jewels when you are supposed to be clearing out . This one is definitely not for the bin. Indeed thinking about this morning’s clinic I thought I might add the youtube link to the list of web addresses to append to letters going out so that patients and our public have an idea of what we are trying to achieve with shared decision making and supported self care. It irks me a little that we still send out paper copies of letters rather than e-copies to those who would prefer electronic comms. Most, however, can access the letters via renal patient view.

Dickens was of course writing about the French revolution in A Tale of two Cities and we would be foolish to underestimate the impact the Health and Social Care Act might have – the good , the bad and the unpredictable . As Nigel Edwards of the Kings Fund said this morning on Radio 4 – it’s a big untested experiment . Let’s be alert for the opportunities to make improvement that will no doubt occur. Let’s be vigilant about problems that might develop – not to blow them out of proportion but to ensure corrective action is taken . Mainly let’s not be passive – it’s our NHS and its shaped by the values and behaviours of the NHS staff . Quality can only be delivered in clinical encounters, it should be delivered in every clinical encounter.

Rob and Eleri explain how we can do that better.
http://www.youtube.com/watch?v=va3SF405Vj4&feature=youtu.be

Don't let them die of AKI

This year the global kidney community made acute kidney injury (AKI) the theme of World Kidney Day. This was a significant and important moment in raising the profile of such a common, harmful, and avoidable condition. At the Renal Association and forthcoming British Renal Society meeting AKI research is prominent and the NICE guideline on AKI is now out for consultation – what are you doing about it?

The day before World Kidney Day, in a prescient step, the Government appointed US patient safety expert Professor Donald Berwick to lead a newly created National Advisory Group on the Safety of Patients in England.

Berwick’s Group has been set up in the wake of the Mid Staffordshire NHS Foundation Trust Public Inquiry to make “zero-harm” a reality and take ‘serious and profound action’ to minimize patient harm. As his group of 14 US and UK experts sit down to take on this challenge  there will no doubt be a number of competing issues jostling for priority on their agenda. However, despite, being the cause of at least 12,000 avoidable deaths a year, an average of 32 a day, it is unlikely that AKI will be at the top of this group’s agenda. 

This would be a mistake and a missed opportunity. AKI is the “miner’s canary” of the quality of basic and safe care. It is the reliable biomedical counterpart to the “cultural barometer” called for by the Right Honourable Robert Francis QC’s in his second report on the Mid Staffordshire Trust failures of care.  It is the one single measure which will tell us if we are making improvements from the nadir of Mid-Staffordshire.

AKI is silent but deadly. It is estimated to affect up to one in five, or 20% of all emergency admissions to hospital, often as a result of primary illness such as pneumonia, diarrhoea or a heart attack.  That’s over half a million people a year in the UK  of whom somewhere between 62,000 and 210,000 people die with AKI, which is almost 200 times the number dying of a MRSA.

Up to a third of cases of AKI and thousands of deaths could be avoided through the provision of basic medical care, including reviewing medication, ensuring that patients are hydrated, treating infections promptly and ensuring consultant review within 12 hours. However, current care of patients is variable and often poor. The 2009 NCEPOD report Adding Insult to Injury highlighted failures of basic care of those with Acute Kidney Injury (AKI), with only half being found to be adequate.

In the age of the ‘Nicholson Challenge’, there is also a significant financial imperative to make AKI a political priority. AKI prolongs hospital stay by a multiplication factor of over 2.5 and costs the NHS £1.2 Billion. That’s the same cost as the whole of the chronic dialysis and kidney transplant programmes and greater than prostate, bowel and lung cancer combined. Estimates suggest AKI prevention could save the NHS between £130 to 186m a year, which would pay the full staff costs of a moderate sized district general hospital.

The challenge is how we can take a condition that is seen as a complex, specialist, renal issue and make it a mainstream health priority. The good news is that as a renal community, we are uniquely well positioned to make this happen, and in our experience with CKD, we have the roadmap.

Last year was the decade anniversary of the KDOQI CKD Guidelines, which were the first step in a ten year transformation of the political, public and policy profile of kidney disease. Whilst retaining the prioritisation on improvement in dialysis and transplantation, a wider focus was achieved, getting kidney disease understood within the wider-vascular agenda and making it an issue for all health care professionals. We transformed CKD beyond recognition lets now do the same for AKI.

What can we learn for AKI? NICE Guidelines for AKI, launched for consultation on World Kidney Day, and the prioritization of AKI in the Department of Health’s Cardiovascular Disease Outcomes Strategy are significant steps for raising awareness and influencing practice to tackle variations in care. 

However, they will not be enough alone. Indeed, the AKI guidelines are aimed at non-specialists in the NHS and it is worth remembering that we already have NICE Guidelines 50 on the recognition of acutely ill patients in hospital, which were published five years ago.Unfortunately, sometimes when an issue is everyone’s business, it quickly becomes no one’s business.

The last few months have been a tough time for the NHS. Not only have we just gone through the largest reorganisation since its inception in 1948 but at the same time the issue of how we in the NHS treat vulnerable patients, not only at Mid Staffs, has rightly come under scrutiny. AKI largely affects the vulnerable. The same people who often don’t get adequate hydration or nutrition in hospital. The same group for whom compassion, dignity and respect is often lacking.

AKI is the safety concern for the NHS and we will need broad engagement across specialties to drive improvements. But we will not achieve the transformational change required simply by commissioning alone. First and foremost, healthcare professionals across the NHS need to understand what the kidney does, why it is important, and how it can be protected. We will all need to ‘think kidney’ as a matter of course.

There has been a lot of nurse and health-care assistant bashing but culture is set from the boardroom. As General Slim once said “there aren’t any bad soldiers only poor officers.” In my experience nearly everyone in the NHS gets up in the morning to do a good job. So let’s move away from blaming whole segments of the health care professions but at the same time acknowledge that the system isn’t the Commissioning Board, the new PFI trust buildings, the rules and regulations – it’s you and I, it’s the staff of the NHS and yes we need to up our game as multiprofessional teams and help address these failures.

Let’s start with AKI. Let’s use the Academy of Medical Royal Colleges multiprofessional skills and competencies framework on all our wards.  If you haven’t introduced eAlerts for AKI in your hospital what on earth are you waiting for?  If AKI isn’t a board priority in your hospital, if it’s not in the quality accounts, why not?  But most of all, what can you personally do to help stop people dying of AKI?

My message to the kidney community as I step down from the role of Renal Tsar for the country is thank you for all your support, together we are doing a good job for patients and families with CKD.  Now is the time to turn our attention to AKI.

Kidney the Heart of a New CVD Strategy

Living well for longer needs good kidney function. Many will have seen the press coverage of the Lancet article on “UKhealth performance: findings of the global burden of disease study 2010” earlier in the week. It concluded that although life expectancy in the UK has increased by 4.2 years, in the twenty years from 1990-2010 the UK’s position in the league table of other developed countries remains poor and is significantly below the average in Europe, North America and Australia. It calls for an integrated and strategic response to improve public health, prevention, early intervention and treatment.

The same morning the Lancet article appeared, the Secretary of State for health launched a call to action to reduce avoidable premature mortality. Stopping smoking is probably the most important thing a healthcare professional can advise and help with, and certainly outweighs anything else an individual smoker can do for their health. Smoking takes 16 years off life expectancy, causes kidney disease and accelerates the loss of kidney function. Smokers are less likely to be suitable for transplantation.

The call to action illustrates the problem- for instance the all cause mortality for women in England is placed 15th out of 17 European countries. Last year, 37,000 people died of circulatory diseases - that includes kidney disease. Those living in the most deprived areas are more than two times more likely to die prematurely when compared to the least deprived 20% of our nation. Kidney disease has an earlier onset, is more severe and has worse outcomes in deprived populations. What can we do? Answer: Everything we can- more prevention, earlier diagnosis, better treatment, more choice, improved dignity and care. England would have 29,000 fewer deaths per year if it had the same mortality rates as Switzerland.

The “reforms” of the Health and Social Care Act will be in place by 1^st April this year. Not only is that April fools day, it is also Easter Monday. Despite that the  various bits of the health  jigsaw -  in the NHS Commissioning Board, Public Health England, Local Government and the Local NHS need to fit together and unite behind the goal of reducing avoidable premature morbidity and mortality.

Okay, what does that mean? Well, look at the Cardiovascular Disease Outcome Strategy, it has identified 10 actions covering:

• Manage CVD as a single family of diseases
• Improve prevention and risk management
• Improving and enhancing case finding in primary care
• Better identification of very high risk families /  individuals
• Better early management in secondary intervention in the community 
• Improve acute care- this includes avoiding acute kidney injury
• Improve care for patients living with CVD
• Improve end of life care for patients
• Improve intelligence, monitoring and  research and support commissioning

Health care professionals, commissioners, carers and families, patients, health and well-being boards and the public all have a part to play in this strategy that recognises the importance of kidney disease, as both the vascular disease and a vascular risk factor or amplifier.

During the development of the strategy what I regularly heard was:

 “Treat me as a person and not a single condition”

 “Get the various bits of the NHS that look after me to pool their expertise and share information about my care”

“Don’t miss opportunities to improve my treatment and care, because you’re only interested in the heart…diabetes… or the kidney”

“Prevention is definitely better than living with a long-term condition that can’t be cured”

“Look after me safely when I am sick- protect my kidneys”

“We live in the 21^st Century – use information to drive better understanding and improvement”

Jeremy Hunt cannot make these things happen. David Nicholson cannot make these things happen. The kidney community- that is you can play its part to make all these things happen. The only place quality is actually delivered in the NHS is in the interactions between patients and health care staff  face to face, by telephone, by renal patient view  and other means at all of our disposal