NHS system reform

I am not sure when the term “system reform” was first used but the first full description of the scope of “NHS system reform” was set out in the document “health reform in England: update and next steps” in 2005.

NHS system reform refers to a series of specific policies that taken together attempt to describe a coherent redesign of the whole NHS system to boost efficiency and responsiveness of services. It heralded a move away from centrally driven targets, the astute readers amongst you will know that the “t” word doesn’t figure in the Renal NSF, to a system designed to help encourage the NHS to be “self improving”.

The health management specialist library, part of the national library for health provides a detailed update on NHS system reform collating the various studies, commentaries and reports. It is a great place to start if you want to get your head around the big picture – what was intended, what has been achieved and what we have still to do. There may be those who view system reform as akin to the cultural revolution in Red China but its basis really lies in the information revolution. Information and the new technology are essential for each of the 4 pillars which are:

• Demand side reforms - including patient choice and commissioning
• Supply side reforms – including alternative providers (private and voluntary sector) and Foundation Trusts
• Transactional reforms – chief amongst these being payment by results
• System management reforms - particularly changes to the regulatory environment.

The conceptualisation of the reforms as “demand” and “supply” side, terms borrowed from the private sector, seemed a little awkward or uncomfortable initially for those of us who had grown up in the old NHS. But one of the striking changes in the last decade has been the move to industrial principles in UK healthcare. From clinical governance, through lean approaches to the safety analogies with the aircraft industry we are taking concepts from other spheres of activity and using them to promote quality in healthcare.

The health management specialist library update has lots to interest those promoting better kidney care. Kesh Baboolal (Consultant Renal Physician, Cardiff) has an article entitled “the cost of renal dialysis in a UK setting: a multi-centre study. Nephrology, dialysis, transplantation 2008” that is the number one article in the Payment by Results section. Commissioning safe and sustainable specialised paediatric services, that Jane Tizard (Consultant Paediatric Renal Physician, Bristol) helped author gets a mention in the Commissioning section and there is much, much more – some positive, some critical. Be informed, read it at the Health Management Specialist Library.

Q & A: Patient checklist

Previously published in Kidney Life


Q; I am now 67 and will have been on hospital haemodialysis for three years by next month. I listened to your speech at the NKF conference at http://www.nkf_/ . You talked a lot about patient-centred care but my experience is different. I don’t think I was offered all the possible dialysis options and no-one would speak to me about transplantation before I started dialysis. How can I check that the dialysis treatment I receive is the best for me and how much choice do kidney patients really have?

A: Some patients get a lot of information and support to help them make the big decisions facing them but that doesn’t occur for every patient in every unit every time. It should do. I don’t know your full clinical circumstances but you should certainly have been told about the pros and cons of transplantation in your case and had a choice between the various forms of peritoneal dialysis and home haemodialysis as well as hospital dialysis before you started replacement therapy. Many clinicians would now argue that all patients likely to progress to end-stage kidney disease should also get information about supportive care, sometimes called the no dialysis option so that they are fully aware of all the options.

Enabling informed patient choice of treatment for end-stage kidney failure is a process that takes time and explanation. All sorts of factors need to be considered, and often discussed with patient’s nearest and dearest, it is not a process that should be rushed. Clear, plain language information for patients is essential, as is the opportunity to talk to doctors, nurses, dieticians, social workers and other members of the multi-professional kidney team. The NSF makes it clear that all patients should have access to the kidney team for these reasons for at least a year before preemptive transplant or starting dialysis. Two good DVDs spring to mind as being particularly helpful resources for explaining the different treatment options and these are produced by Kidney Research UK and Guys and Saint Thomas’s Charity there are also Andy Stein’s award winning books. I would encourage everyone with CKD to request these DVDs and to dip into the parts that are relevant to them as and when they feel like. They are available from the links at the end of my article.

I know how difficult some patients find it to ask the ‘right questions’ about their treatment from their consultants, nurses and other hospital staff involved in their care. For that reason in February last year, the Department of Health’s Renal Advisory Group held a workshop on Quality and Patient Experience to discuss how to measure patient experience and ensure that the voice of patients and their own carers are incorporated into care planning, commissioning and service evaluation. Participants at the event including patients and renal staff contributed to an empowering checklist that will hopefully encourage and enable patients to review the quality of service they receive, help them to consider and ask key questions to improve the quality of care they receive.

I’m happy to say that The Renal Haemodialysis Patient Checklist produced in partnership with the National Kidney Federation (NKF) and British Renal Association (BRS) was officially launched at the European Dialysis and Transplant Nurses Association Conference in Bristol in November last year. I would like to thank Tim Statham of the National Kidney Federation, and Paul Stevens of the British Renal Society for their support in producing and distributing this patient resource.

I hope that this checklist will help you and all current and future kidney patients to understand all the treatment options, and ask questions that will improve your experience of dialysis. As Tim Statham of the National Kidney Federation has said “Providing this checklist is now available all the time, in all the renal units, then patients will pick one up, start to fill it in, and realise for themselves how good or bad the treatment they are receiving is measuring up to what is possible.” I am passionate about driving forward the choice agenda, if your unit is not offering you treatment that you feel is appropriate such as home haemodialysis or nocturnal dialysis, ask them why not!

Links and addresses:

Guys and Saint Thomas’ and Kings Modernisation Initiative website is:
http://www.modernisation-initiative.net/
DVD’s available on request from
Lisa.Silas@gstt.nhs.uk

Lisa Silas, Renal Unit, Kings College Hospital, Denmark Hill, London SE5 9RS
Eleri.wood@kingsch.nhs.uk

Eleri Wood, Kidney Unit, Guy's Hospital, Great Maze Pond, London SE1 9RT

Renal NSF update October 2008

The Renal NSF update for October 2008 is available here

Q & A : Patient Choice

Q: Dear Dr O’Donoghue, I would like to bring your attention and ask for your view on the following matters that I am routinely exposed to in UK renal units.

On many occasions after presenting my company to renal units we often get into further discussions surrounding the current dialysis situation in the UK and more importantly why it was that I chose to use home therapy dialysis (CAPD). I enjoy these talks immensely because at the end of the day I am a renal patient and have a very deep felt affection for the people that use dialysis and those that care for them. It seems to me throughout all my meetings, renal units up and down the country are desperately trying to modify the renal landscape into a more balanced approach that is encouraging greater use of home therapy. Nurses often tell me that they feel pressured into this desire for ‘patient choice’, which they feel can sometimes work against patients. Don’t get me wrong they and I are all for choice but feel that it would be more correct to desire ‘informed’ choice. On this I feel the general public (who then become renal patients) will always lack that necessary insight into dialysis therapies to make this happen. Dialysis is always referenced as HD in any form of media coverage (and sometime in hospitals as well!) so much so that I believe it will be very difficult to educate renal patients to a level where they have that necessary informed view to accept other dialysis therapies, something many units agree with me about. For that reason do you believe it is now time for doctors and nurses to have more of a say in the therapy their patients do? After all, they are the individuals who have the experience and knowledge in this matter. I know that it saddens these nurses when they see patients choosing hospital dialysis when they know full well a home therapy would be better for them. However, because they have to tread this fine line between informing patients and giving them choice they sometimes feel afraid to offer advice, which could be easily viewed as forcing a particular dialysis on a patient. Given this how do you see us improving patient choice as recommended in the recent dialysis manifesto by the APPKG? I know this is a very difficult subject, but it just seems to me that our renal network is under so much stress to provide constant HD access that it will be forever swimming against a tide if this issue is not addressed.

Given what I have said above are there any procedures in the UK presently focused on producing a standard pre-dialysis education programme focused on improving the uptake of (all) home therapy that allows for greater input and advice of nurses/doctors? And do you think we need one? Additionally do you believe that we may have become too reliant on HD in this country and that we may never improve our capacity problem until we address the above?

As a renal patient myself I feel connected to this problem as much as every other person involved in our renal network. I believe we may be doing ourselves an injustice if we don’t allow our renal teams to assist in dialysis choices because of the fear of repercussions, in fact I believe the repercussions will be far greater if we don’t. I’m sorry for having take up so much of your time with this long email but would really like to hear your thoughts on the matter.
Regards, John McCarthy, Managing Director, Renal Freedom

A: Dear John, thank you for your letter. Choice is a central theme of the National Service Framework (NSF) for Renal Services. The NSF makes it clear that patients should be offered a choice of renal replacement therapy that includes pre-emptive transplant listing including live donation, in-unit haemodialysis, home haemodialysis and peritoneal dialysis as well as supportive end of life care. Choice is also a subject very close to my heart. I am pleased to learn that your impression coincides with mine – the kidney care professionals are keen to get the balance of renal replacement therapies “right”.

A good choice must be informed and is a process rather than a point in time. Some years ago, we conducted a study in Manchester on an inception cohort study of people on dialysis. We thought we were offering choice – but patients told us that their view was that doctors and/or nurses were really making the choice for most of them. I believe the situation has improved over the last decade – the earlier identification that estimated glomerular level filtration reporting and inclusion of a chronic kidney disease domain in a Quality Outcomes Framework of primary care should allow a longer lead time before replacement therapy is needed. We also have some good national products such as the Kidney Research UK/British Renal Society DVDs and the information that is now available on NHS Choices.

However, I am not complacent. The report of the 2006/2007 DH sponsored Action Learning Sets on processes in the year before renal replacement therapy noted that:

• All patients should have on-going access to verbal and written information, advice and support for the management of their established renal failure. This should include preparation for dialysis, transplantation or conservative management.


• Patients should have a free choice of renal replacement modality, restricted only by individual medical limitations.

The soon to be published 2007 Renal Registry UK data however still shows unexplained variance in modality proportions between kidney units. The recently reissued NICE guidance has recommended that home haemodialysis as a modality of treatment should be offered to all appropriate patients. Full details can be found at Renal Failure – Home versus Hospital Haemodialysis

I think there is a real opportunity to improve experience and outcomes if we can get things right in the “Golden Year” – the year before renal replacement therapy is necessary (or before conservative kidney care begins). We are working to provide support for the service and people with kidney disease during this stage. NHS Kidney Care is sponsoring a national project on care plans and care planning the outputs of which should be available to the kidney community from World Kidney Day 2009.

Build it and they will come

Kevin Costner’s cult film was invoked by Kim Cox (Specialised Services Commissioning Lead, Yorkshire & Humber) to describe the consequences of building a new dialysis unit. The teams responsible for developing and providing the new autonomous kidney care services at Doncaster and Northampton and the group working on the Worcester service had come together to share experience and to identify the challenges, work around S and solutions to achieving new local services.

Each of the units are at different stages of development and have different histories. David Throstle (recent Clinical Director, Sheffield Kidney Institute) and Ian Stott (Consultant Nephrologist, Doncaster) told the South Yorkshire story of a commissioner led 10 year investment plan, 2 Foundation Trusts with different business models – neither wrong, just different approaches, and how the whole kidney care community made the Doncaster service a local and Sheffield win-win, but mainly a win for people with kidney disease from Doncaster. The service now includes a 24-7 acute kidney injury (AKI) capability, all modalities of renal replacement therapy (RRT) except the acute phase of transplantation and home haemodialysis support, a full multi-professional kidney care team, a 24 bedded inpatient unit plus the dialysis unit.

Warren Pickering (Consultant Nephrologist, Northampton) gave a graphic account of historic land grabs, the reality of practicing and receiving care at the interface between different units or networks and the organic growth of the Northampton service as part of the East Midlands Renal Network supported by the Leicester mother unit.

The growth of the RRT population was a major driver for the creation of both these units. Modelling had shown that critical mass would soon be reached and central expansion or local provision were the only options. Because we don’t have good information on transport costs or carbon footprint data the savings, and there must be savings, in these areas haven’t been quantified. It was clear from talking to Ian and Warren that their input into AKI in their hospitals and ICUs was quicker, more responsive and mainly consultant delivered in comparison to many regional acute services where transfer with all its attendant delays takes a disproportionate amount of time and effort.

Paul Bates (CEO, Worcestershire PCT) is no strange to kidney care having sat on the National Service Framework External Reference Group for 3 years. Paul is steering the development of the services for Worcestershire and Herefordshire with the local teams, the University Hospital Birmingham physicians and commissioners. Paul emphasised the importance of tripartite dialogue between the specialists, the provider organisation and the commissioners so that both the business and clinical risks can be managed. I learned a lot about Local Authority Health Overview and Scrutiny Committees – these HOSC groups will have an increasing say in how local services are developed and delivered.

A debate about the pattern of service in England is beginning – we have 52 main renal units, the other 3 home countries with only 20% of the English population have 26 main units! The geography and demography are different but the stories from Doncaster, Northampton and Worcester describe some of the benefits of providing comprehensive kidney care close to peoples’ homes. The learning from these projects will help others considering similar schemes and will be made available via NHS Kidney Care (http://www.kidneycare.nhs.uk/Default.aspx) soon.

bedtime reading: Pan Thames Renal Audit Group Transport Audit

The excellent Pan Thames Renal Audit Group report prepared by Alistair Chesser, Monique Carayol, Claire Cox, Carrie Gardner and Peter Choi has helped shape the national renal Transport Audit and provides food for thought for the 12 Pan Thames units as well as a template to begin action planning elsewhere in the country even before the National Audit Information is published.

Executive Summary
Full Report

Audit, Information & Analysis Unit

From toddlers to twenties and beyond

That’s the title of a famous Lancet paper by Ian Houston and Bob Postlethwaite on the long term outcomes in childhood steroid responsive nephrotic syndrome. Bob and I ran an adult paediatric interface meeting annually for 10 years from 1993 and we appropriated “toddlers to twenties” as the strap line.

It is well recognised that brain development continues well into the mid to late twenties and in the 21st century many young people are in higher education or travelling way beyond the age of 18 years. Transfer of care between children and adult services might be a point in time but transition is a process perhaps beginning at age 11 or even earlier and going right through to the mid-twenties. Our services for young people do not reflect that – we need to change if we are to optimise care and outcomes. We know from the work of Alan Watson and others in Nottingham that many kidney transplants are lost in the months and years after transfer to adult services. A significant proportion of these graft losses are avoidable. But it’s not about the kidney – it’s about the person with the kidney, or with the person with cystic fibrosis or indeed the young person with any long term condition.

I have 3 children, Daniel, Kathryn and James and I was an adolescent once but certainly wouldn’t claim to understand adolescence! I was therefore very pleased to find the adolescent health e-learning webpage at e-learning for Healthcare (Department of Health in partnership with Professional Bodies and the NHS). Janet McDonagh (Clinical Senior Lecturer in Paediatric and Adolescent Rheumatology) signposted me to the site and is passionate about adolescent medicine. Janet eloquently makes the point that it’s the generic issues that are important for young people and it’s support of the kind youth workers can provide that can make the difference.

Lots of documents have been produced about the importance of linking paediatric and adult services but I think if you ask Susan Frade (Young Persons Group Chairperson, NKF) or other members of that forum you would be amazed, perhaps ashamed, at the experiences young people have had leading up to and following transfer.

We need to do something, I recommend:
If you have not already done so, read the report from the Renal NSF Action Learning Sets on Transitional Services produced by the teams at London (Great Ormond Street) and West Midlands (Birmingham Childrens Hospital).

If you are a healthcare professional why not do the modular e-learning course. If you are a trainee that would give you competitive advantage.

If you are a young person with kidney disease I recommend you ask your kidney care doctors and nurses if they have done the e-learning course and if not, why not?

bedtime reading: QOF changes and new indicators for 2009/10

This 3 page document, relased on 14 October 2008, outlines the agreement that has been reached between the GPC and NHS Employers for a package of QOF changes for 2009/10.

This includes a reallocation of points to Heart Failure, Chronic Kidney Disease, Sexual Health, Anxiety & Depression, Cardio-vascular Disease and Diabetes.

BMA site

Patient transport matters - be part of improving it

I wanted to take the opportunity to remind you about the patient transport survey, which is taking place this week. All haemodialysis patients attending treatment on either 15 or 16 October (this Wednesday and Thursday) will be given a short questionnaire to fill in about your experience of travelling to dialysis and home from your last dialysis session.

This is being collected for the National Kidney Care Audit, which is run by The NHS Information Centre. The audit will identify the best way to improve renal services, and is looking specifically at patient transport and vascular access. While the vascular access information will be collected through existing data collections, to get a true picture of patient transport services, we want to ask patients about their day by day experiences.

I know what an important issue patient transport is to so many of you – whether it’s uncertain pick-up times or lack of free parking – and by contributing to the audit you will be able to help bring about improvements for everyone.

It’s really important that this survey is beneficial for patients, and I know The NHS Information Centre have been working closely with the National Kidney Federation to make sure that the survey addresses your needs.

I would like to reassure you that all the information collected will be confidential. If you would like more information, you can read the frequently asked questions on The NHS Information Centre’s website.

If you work in a renal unit, or if you are a commissioner of renal services, we need your input too. An online questionnaire is being sent to all renal unit managers and renal commissioners so that the audit has a joined-up picture of how services are provided. The unit manager and commissioner questionnaire should be completed by 31 October 2008.

The patient questionnaires were sent to all renal units and satellite units last week, so everyone should be ready to go. If you work in a unit and don’t think you have received your packs, you should contact the project team at kidneycare@ic.nhs.uk or phone 0845 300 6016.

I hope that everyone will get behind this important survey and take part. I look forward to seeing the results: it’s only with hard evidence that we can begin to make real improvements for all patients.

More information can be found here

Radical social movement in Manchester

A Home Haemodialysis Symposium in Manchester on 2 and 3 October 2008 was oversubscribed – 20 or 30 people were turned away. The lucky 200 heard about the experience of home haemodialysis from Canada, Finland and several centres in the UK. Dr Martin Wilkie (Consultant Renal Physician, Sheffield Kidney Institute) gave a great talk on the future of Peritoneal Dialysis (PD). That was the only exclusive peritoneal dialysis talk but the concept of an integrated service – offering choice, training support for the optimal replacement therapy option, or conservative kidney care underpinned the philosophy of the whole faculty and delegates. I spoke about commissioning flexible dialysis provision - and commissioning is an important lever for change. The power of the people however is an even greater lever. As a kidney care community we have moved a long way since 2002 and the NICE health technology assessment guideline suggested that up to 15% of dialysis patients would benefit from home haemodialysis. Some of you will remember that there was a strong negative reaction to that recommendation – this was “pie in the sky” was a frequently heard comment. The fact the costing model used in 2002 was seriously flawed added to the scepticism, indeed cynicism, about the figure of 15%.

Dr Sandip Mitra (Consultant Renal Physician) and colleagues Manchester Royal Infirmary now have 15% of all haemodialysis patients on home haemodialysis!! Dr Cormac Breen (Consultant Renal Physician) and the team Guy’s & St Thomas’ have gone from 3% and falling to 7% and growing and are aiming at 10% within the next year or so. Derby have the same goal. At Guy’s people on home haemodialysis agree their hours and care plan with the community dialysis team – some are still on 3 x 4 hours per week, far more on 5 or 6 times per week, some on 2 hours daily and some on daily nocturnal.

Costs of home dialysis are less than hospital based – no travel costs and much less staff costs. Of course dialysing 6 or 7 times per week does use more consumables and costs more than 3 times per week home haemodialysis – a small sum in the scale of things. How have these units achieved that shift from in-centre to home treatment? Not rocket science, not financial investment, not a miracle: no they have achieved it by designing their service around the needs and choices of people approaching or on dialysis. But redesigning the service alone would not achieve similar results – in addition to designing around patient preferences these teams have moved their model of delivery from a reactive to a proactive managed care model. Planning for the population, using Registry and other demographic data and most importantly of all care planning for the individual is the key to success.

In the words of a Manchester Royal Infirmary patient “dialysis at home was safe, machine problems were rare, the community support was excellent, and the delivery of supplies well managed”.

bedtime reading – peer support for kidney patients

The publication “No white coat between us – developing Peer support services for kidney patients”, is the conclusion of work carried out as part of the Kidney Disease Modernisation Initiative, funded by Guy’s & St Thomas’ Charity. In the words of one of its authors Jane Hughes (Research Fellow Florence Nightingale School of Nursing and Midwifery, London), “it’s an accessible account of how clinical staff and patients worked together to implement peer support, overcome barriers, evaluate the service and reflect on what had been learnt. It evolved to complement clinical care in these two hospitals, but others who are thinking about how to deliver peer support might find it helpful to know how it was done.”

Take a look and download a copy of the document here

Dialysis Manifesto Launched on 4 October 2008

The All Party Parliamentary Kidney Group whose Dialysis Manifesto was launched at the National Kidney Federation meeting, Leamington Spa on Saturday 4 October identifies 10 key priorities for action:

1. Increase dialysis provision to match patient numbers
2. Improve the choice of dialysis for patients
3. Improve early recognition of patients who will need dialysis
4. Ensure pre-emptive transplantation is considered before dialysis
5. Provide vascular access and PD catheter access surgery early
6. Ensure every patient has an individualised care plan
7. Use the Renal Registry to plan and audit dialysis services
8. Improve the provision of “away from unit” dialysis
9. Provide free car parking at hospitals for people using dialysis services
10. Maintain the commissioning status of dialysis services as specialised services

Read or download the full document from the NKF website.

Quality and outcomes framework statistics for England 2007/08

The new figures from the NHS Information Centre were published on 30 September and show that the raw prevalence of detected and registered chronic kidney disease in England has increased from 2.4% for 2006/07 to 2.9% for 2007/08.

To calculate the raw prevalence the total practice list is used as the denominator, the number on the register being the numerator. The register however only includes people aged 18 and over so the adult prevalence is of course higher than the 2.9%.

Have a look at your own data at here (select 'Task List' on the right hand side, then Data Tables, the prevalence files are at the bottom of the data tables page). You will see that practices continue to score highly in terms of points achieved but they is still marked variability between practices that can only be explained by differences in ascertainment. The data will help identify PCTs and practices where support and education can be targeted. The tables show individual practices so for instance, Howden Medical Practice in the East Riding of Yorkshire PCT has a CKD prevalence of 15.5%.

The unadjusted chronic kidney disease prevalence ranges from 1.9% in London up to 3.7% in the East Midlands. Given the fact that the epidemiological data suggests 8.3% of the adult population have an estimated Glomerular Filtration Rate (GFR) less than 60 mls per minute, there remains a significant gap between the true and reported prevalence. We know that the majority of people with reduced GFRs have had biochemistry checks in the recent past, presumably because of other co-morbidities. So practices should be able to identify those individuals by interrogating their systems. The East Midlands Public Health Observatory has provided expected prevalence rates by PCT and Local Authority.

The Renal Policy Team and NHS Kidney Care (LINK) are now working to provide the data in a user friendly format for the whole kidney community.