Ode to home dialysis

The NHS Kidney Care home dialysis roadshows came to an end yesterday in London. They have been great fun – every network and area now seems energised. At each event the patient stories were the most compelling reason to look at how we offer choice and consider how we might extend home therapies to all those who want it and are suitable. Paul Connelly who spoke at the London workshop bemoaned the fact that when he started dialysis there was no kidney service at all in Surrey, making St Helier a long 33 miles away for 3 times per week dialysis. When the unit opened in Woking it was just round the corner and Paul describes the provision of local dialysis as changing his life. But he heard about home dialysis from another patient and he knew for him the block might be needling. Having set himself the task of self needling he won that battle and told us at the meeting that he cried the first time he put his needles in because he knew what that meant. He now feels brilliant; he feels that he has his life back and, as Paul says, “you can’t buy that”. Paul is now established on home haemodialysis and manages his treatment with the St Helier team.

On the same day, the East Midlands Renal Network Annual Report for 2009/10 arrived on my desk. It’s a good read, it’s an ambitious statement and it includes this fabulous poem.

Ode to Home Dialysis
Now we have a further stage
Home dialysis, it’s all the rage
No more hassle in making our way
Driving through town at the wrong time of day
Transport’s not a problem any more
We just walk through the conservatory door
Much more convenient you realise
To choose your own time to dialyse
It’s quieter too, much more calm
Even if we have a machine alarm
Yes it’s still a bit of a bind
But at “home” I can quickly unwind
I can look down the garden or watch TV
Read a book, listen to the radio, or play a DVD
I control the volume of these soundings
And I am much more comfortable in these surroundings
I have more choice as you can see
About the way that dialysis affects me
Be assured the backup service is very efficient
Just a phone call for help is usually sufficient
We have Paula, Wendy and technicians too
With supplies provided for all that we do
For three years now to our surprise
Home is very much the best place to DIALYSE
NA & B Bacon, 22 April 2010

Two weeks to go to the 2010 patient transport survey

The National Kidney Care Audit of patient transport for haemodialysis will be collecting data again on 13-14 October 2010. The audit comprises a patient and an organisational survey and is based on the National Service Framework Part 1 that states:

“adequate transport is so important to people on haemodialysis that it plays a vital role in the formation of patient views and attitudes towards dialysis. Good transport systems can improve patient attendance and shorter travel times can improve patient co-operation if the dialysis treatment frequency needs to be increased. Efficient transport facilities reduce interruption of patients’ social lives and may therefore improve quality of life”
Renal NSF Part 1

The audit benchmarks against the Renal Association’s clinical practice guidelines that recognise the importance of travel time for haemodialysis patients, and state:

“… except in remote geographical areas, the travel time to a haemodialysis facility should be less than 30 minutes or a haemodialysis facility should be located within 25 miles of the patient’s home. In inner city areas travel times over short distances may exceed 30 minutes at peak traffic flow periods during the day” …… “… haemodialysis patients who require transport should be collected from home within 30 minutes of the allotted time and be collected to return home within 30 minutes of finishing dialysis”
Renal Association Clinical Practice Guidelines on Haemodialysis 2009

The 2008 audit covered 242 separate dialysis units or satellite units leaving only 5 non-participating HD units in England, Wales and Northern Ireland – Aintree University Hospital, St George’s Hospital, Stratford-on-Avon, Whitnash - Leamington Spa and Yeovil that I hope will be joining in the exercise this October.

The 2008 data showed that overall, about 75% of people were picked up from their home within 30 minutes of the allocated time and for nearly 60% of patients the travel time to their dialysis unit is 30 minutes or less but some individuals are regularly travelling more than one hour to and from dialysis. Nearly 40% of people wait 30 minutes or more after finishing dialysis before they begin their return journey home. The patient stories speak much louder than these cold statistics and the variance across units identifies patient transport as an area where we can make real improvement.

The 2008 audit made several recommendations including:

• Clear and transparent commissioning arrangements with lines of accountability and means of monitoring performance should be agreed by commissioners, hospital trusts, dialysis units and transport providers.
• Dialysis providers should be involved in the transport service which patients use. Eligibility criteria, standards of performance and quality of service should be explicitly agreed.
• Patients should be involved in the commissioning and monitoring or transport. The audit demonstrated that patients want to contribute. Using the transport service gives them a unique insight into the process and a clear interest in driving up quality.
• All dialysis units should carry out regular audit of patient transport including discovering the views of its patients.

We know that patients travel considerable mileage – it’s been estimated at close on 40 million miles per year on the road for all haemodialysis patients. Many people are not having dialysis at their closest unit – this may be for clinical reasons but in some instances, it will result from poor planning. Patient transport for dialysis still wastes the time of many individuals receiving this modality. Excess travel is poor for health, wastes NHS resources and damages the environment. We can do better.

I hope that participation in the 2010 audit can be a driver for change and improvements in patient transport services. For more information contact the NHS Information Centre audit team at kidneycare@ic.nhs.uk

related blogs
Patient transport survey 2008, first phase launch
Patient transport survey results launched

Hypertension, kidney disease and pregnancy

On my first day as a consultant I was called to the antenatal clinic. Pregnancy in young women with kidney disease wasn’t particularly well covered in training back then and I gained most of my understanding of the issues by experience and asking those who knew more. A nineteenth century approach, so I have been pleased to see greater emphasis on this in training and the growing literature which is now pretty big .The new NICE Guidelines on the management of hypertension in pregnancy are a milestone in that journey of how we train and deliver care. They provide a comprehensive review of the evidence base and systematic recommendations for the diagnosis and treatment of hypertensive disorders in pregnancy in the ante-natal, intra-partum and post natal periods from 277 references, scientific papers and publications in 296 pages.

Approaching half the population get pregnant at some time in their life and hypertensive disorders in pregnancy result in substantial maternal morbidity. Maternal death is the tip of the iceberg. The young lady I saw that first morning in the ANC is now a kidney transplant recipient. A UK study reported that a third of severe maternal morbidity was a consequence of hypertensive conditions, a study conducted in the USA found that over half of admissions for acute kidney injury, one quarter of admissions for coagulopathy and nearly one third of admissions for ventilation or cerebral vascular disorders occurred in women with hypertensive disorders. A study from one region in the UK reported that one in 20 women with severe pre-eclampsia or eclampsia was admitted to intensive care.

Hypertensive disorders during pregnancy carry risks for the woman and the baby; although the rate of eclampsia in the UK seems to have fallen, hypertension in pregnancy remains one of the leading causes of maternal death in the UK, Europe and elsewhere. Delays in detailed enquiries have examined standards of care and substandard care (where different management might have been expected to prevent death) have been identified in the majority of cases. These failures of care have not just occurred in the critical care environment and in many instances like my first patient’s problems could have been predicted and avoided long before disaster struck.

More recently, the long term consequences for women with a diagnosis of hypertension during pregnancy have become clear. In particular, chronic hypertension and an increase in both life time cardiovascular risk and progressive chronic kidney disease.

The reliable detection of significant proteinuria is most important in women with hypertension during pregnancy because it distinguishes between those pregnancies with pre-eclampsia and those with gestational hypertension and it sets the scene for future complications, monitoring and management. The NICE Guidance has moved away from the old fashioned approach to proteinuria of following dipstick with a cumbersome 24 hour urine collection to the use of spot urine for a protein creatinine ratio, mirroring the banishment of 24 hour collection containers from kidney clinics up and down the country. The Guideline Development Group flagged the need for further research to confirm how significant proteinuria should be defined, identified and monitored in pregnancy amongst a range of other key research priorities.

Hypertension in pregnancy increases the risk of future development of end stage kidney disease. Women who had pre-eclampsia have an increased risk of end stage kidney disease of nearly five times that compared to those who have not been hypertensive in pregnancy. The NICE Guidance emphasises the importance of telling women and their GPs about these risks although they recommend that those who have no proteinuria or hypertension at post natal review do not require long term follow up. It is important that such women however are aware of the future risks so they are able to appreciate and modify the whole range of their vascular risk factors. They should of course be encouraged to go for the NHS vascular check at the age of 40 where blood pressure and other vascular risk factors, including in some, kidney function and proteinuria, will be assessed.

Disintermediate or "just do it"

Identifying savings is the order of the day and it seems to be acquiring its own jargon. I was informed the other day that we need to dis-intermediate. I thought to myself “how do we get traction for dis-intermediation across the architecture of the new provider landscape?”.

The first step was to establish a more granular comprehension of the complex closed managed adaptive system that is our NHS so I asked Azri Nache (Quality Improvement Fellow here at Salford Royal Foundation Trust) what the term dis-intermediate meant – pretty clear really; “to stop doing things that don’t add value and spend your time doing stuff that matters to patients”.

Hmmm; so I reframed the challenge “how do we stop doing wasteful tasks and do more of the useful things?”. Perhaps by each of us making a list of the 3 most useless and irritating things we find ourselves doing, stop those and spend the time saved on 3 things we need to do more of to improve quality of care.

Shared decision making – meeting in the middle

Shared decision making is moving centre stage. A Google search a few weeks ago brought up 9,800,000 results and it figures prominently in “Liberating the NHS”, the Con-Lib White Paper on health. During the last few decades decisions about health have been shifting from a paternalistic “doctor knows best” approach to an autonomy based model where the service user or “customer” knows best. The move was perhaps most dramatic in the United States. Alexander Kon writing recently in the Journal of the American Medical Association explains that time was one of the reasons that doctors were willing to transition from paternalistic care to patient driven care in the 1980s and 1990s. Kon said “it was very practical, it takes less responsibility, it has less burden, and it seemed to be attractive to the patients. But what we have come to find is that patients don’t often get what they want from that”. Kon argues that patients want their clinical teams not just to give information, but also to take part in decisions. In the UK the pendulum never swung that far. When choice entered the healthcare management vocabulary it seemed to focus on the who, where and when appointments would be offered – extending opening hours to allow evening appointments or choice of which clinic to go to rather than choice in decisions about health. Now there is a move toward shared decision making internationally. This “meeting in the middle” can therefore be seen both as a mid-Atlantic meeting of North American and European models of care and as patients and clinicians meeting as equal partners.

Although shared decision making is becoming the new standard, it remains unclear to many exactly what “shared decision making” means. The goal of shared decision making is to make decisions in a manner consistent with the patient’s wishes. The patient drives the process. The phrase “no decision about me, without me” captures the essence of the meaning. Shared decision making does not mean the same thing in all cases and therefore can best be understood as a continuum. At one end, the informed physician telling the patient what to do and at the other end the physician informing and the patient deciding.

The idea is to find the mid space on the continuum the patient feels most comfortable and this requires clear communication and dedicated time. Actively listening is essential so that doctors or nurses do not inappropriately take too much control or force patients to bear more of the burden than they wish. Getting that balance right is part of the art of clinical care; it requires training and experience but can be facilitated by a range of techniques and supported by tools or patient decision aids.

This is relevant across the whole of kidney care from risk assessment and management through to advanced kidney disease, replacement therapy and palliative care. Decisions about lifestyle, for instance in the management of hypertension; diet, exercise, moderation of alcohol and smoking cessation, are more likely to ensue if they are accompanied by behavioural change plans that encourage and promote health. Prescribing of medicines should always be preceded by discussion of the indications, potential adverse events and evidence base for the treatment. The patient’s views on the likelihood of a particular class of anti-hypertensive drug causing impotence or the effect of the route of administration, oral or intravenous, of cyclophosphamide in the treatment of vasculitis on subsequent fertility need to be explained by the clinician, considered by the patient and factored into the prescribing decision. The timing of ultrasound scanning in those with a family history of polycystic kidney disease should take into account the possible negative impact – psychological, emotional and financial – of a positive scan as well as the utility of accurate diagnosis. People need time and space to consider these big decisions if the best outcomes are to be achieved.

Shared decision making is now a central pillar of the NHS quality and efficiency programme. In the USA, formal adoption of shared decision making within care planning has been shown to improve experience of care, quality of outcomes and costs. Costs fall because when shared decision making is introduced the uptake of complex interventions such as coronary artery bypass grafting, prostatectomy or hysterectomy usually falls. In the UK most of the experience is in orthopaedics. When patients who are technically suitable for knee replacement surgery use shared decision making aids in reaching a final choice, fewer elect for surgery compared to those who recieved traditional clinic based care alone. But more of those who do proceed to surgery get better outcomes. Both groups using the decision aid, those who go forward for surgery and those who decide not to, have high levels of satisfaction. Fewer operations take place, outcomes of operations improve and total costs are less. As Steve Laitner (GP, public health physician and National Lead for shared decision making) says this isn’t rationing care, it’s rational care – “give the patient what they need and know less; give the patient what they need and know more”. This recognises that drugs, surgery and other treatments have negative as well as beneficial consequences and that one size doesn’t fit all.

The patient decision aids that are available attempt to explain risk and potential benefit in the context of the patient’s values and beliefs taking into account other relevant medical and social factors including co-morbidities and social care needs.

The choice of modality of renal replacement therapy or the decision not to have dialysis but instead to receive conservative kidney care is one of the most important decisions for those with advanced kidney disease. It’s a part of the pathway where we know that there is large variation between kidney units; both in how they approach and present issues and also how staff support patients facing these options of pre-emptive and live donor transplantation, home dialysis (both peritoneal dialysis and home haemodialysis) and conservative kidney care. Care planning in the 12 months before the need for renal replacement therapy is vital for good outcomes in end stage renal failure.

“All children, young people and adults approaching established renal failure are to receive timely preparation for renal replacement therapy so the complications and progression of their disease are minimised, and their choice of clinically appropriate treatment options is maximised. Markers of good practice

• Referral to a multi-skilled renal team, where possible at least one year before the anticipated start of dialysis treatment, for appropriate clinical and psychological preparation. This principle should also be followed for people with a failing transplant.
• Accelerated process with intensive input from the renal team for those who present late to renal units or as acute uraemic emergencies.
• People with ERF given information about all forms of treatment so that an informed choice can be made.
• Patients put on the national transplant list within six months of their anticipated dialysis start date if clinically appropriate.
• Anaemia treated to maintain an adequate haemoglobin level.
• Management.

Standard 2, Renal NSF

Great progress has been made in the creation of vascular access before starting dialysis. For many patients, engagement in the choice agenda has been less dramatic. One patient, now on home haemodialysis remarked recently to me that he “learned about home haemodialysis in Denmark”. Needless to say, he is neither Danish nor does he live in Denmark! He had been on RRT for over 10 years before he heard of home haemodialysis. Dedicated time must be provided to support patient choice in renal failure. Perhaps by consciously adopting a shared decision making model of care in advanced kidney disease, with healthcare professionals paying more attention to active listening, gaining a better understanding of patients’ values, how they learn and make choices, we might see improvements in the experience of care, patient related outcomes and clinical outcomes.

The White Paper consultation: your participation is essential

Unless you have been holidaying on Mars for the past 2 months, you will be aware that Andrew Lansley, the Secretary of State for Health set out his plans for reforming the NHS in the White Paper “Equity and Excellence: liberating the NHS” in the early weeks of July. The White Paper is supported by a series of consultation documents which are now underway.

It is clear that the quality and efficiency work to make productivity savings of £15-20 billion must continue with renewed focus and pace. We still do not yet have a good representation of all kind of ideas and projects the kidney community has been working on available on NHS Evidence. Patrick Harnett and colleagues from Southend have described an innovative scheme to improve transport and reduce costs and a few other projects are under review. I would encourage all members of the kidney care community to consider show-casing what you do well on NHS Evidence and will be happy to speak with anyone considering a submission.

Much of the commentary on the White Paper is focussed on the changes to Commissioning but there are equally big changes ahead for providers. There is a huge opportunity for clinicians to influence the shape of future services. The next 3 years will be challenging. Renal consultants and the multiprofessional team will play a crucial part by offering clinical leadership within your renal units and across the range of organisations that make up your local health and social care system. Never has it been more important that the renal clinicians engage with general practice colleagues and that primary care and hospitals work together.

It is vital that as many members of the kidney community as possible engage and participate in the consultation and bring your experience and knowledge to bear on the formation of the Outcomes Framework.

The White Paper sets out plans for reform through 4 key themes, all relevant to people with kidney disease.

1. Give patients more information and choice about their care guided by a simple mantra; “there will be no decisions about me without me”. Shared decision making about renal replacement therapy and conservative kidney care fits perfectly.
2. Improved health outcomes to among the best in the world. From targets to outcomes – we have been arguing this for a decade. Our NICE standards for kidney disease are due to be published shortly.
3. Hand back power to patients and the NHS professionals who treat them. Empowering doctors to deliver results and put them in charge of the services that best meet the needs of local people. GP clusters will change the whole commissioning environment. We have an opportunity to address commissioning across the whole pathway but there is a risk that renal services will be marginalised or seen as completely separate from the main focus of the NHS.
4. Remove unnecessary beaurocracy, cut waste and make the NHS efficient. To which we could add green! Providing the right care is a responsibility we all have.
   
   The White Paper lays out the what but you are part of the how. The landscape is changing, it reminds me of 10-12 years ago when the groundwork for our NSF was laid. Don’t wait until it’s all settled down, shape your future – comment nationally and get engaged locally.