Renal NSF update December 2008

The Renal NSF update for December 2008 is available here

bedtime reading: NHS Choices guide to kidney disease

A new guide to kidney failure is available on NHS Choices . The increasingly popular NHS website, now with 4.5m visitors a month, is developing information and advice across a range of specific long term conditions, the latest being kidney disease.

Written in plain English and covering prevention, symptoms, diagnosis, treatment and living with kidney disease, the Guide also enables health professionals, carers and those living with the condition to search for local services such as local support groups.

Christmas message

The year began with Gordon Brown informing Parliament that kidney disease is a major vascular risk factor - the first Prime Minister in history to use the “k” word in the Palace of Westminster. As the year draws to a close we are putting the final touches to a new NHS organisation – NHS Kidney Care, an improvement team for the kidney community. Between those time points lots has happened:

• In February the Organs for Transplants report was funded.


• New vascular checks for all above the age of 40 has been inveiled.


• 25% more people have been identified with early kidney disease.


• The NICE guideline on CKD was launched.


• The Dialysis Manifesto has been produced by the All Party Parliamentary Kidney Group.


• New kidney units have been opened.


• The National Kidney Federation has moved to new offices.


• More people are receiving home haemodialysis now than at any time for several decades.


• We have continued to see growth in live and non heart beating donor transplant.

2008 has been a good year, lets make 2009 a great year for kidney care.

Measuring for quality improvement

“I am called eccentric for saying this in public; that hospitals, if they wish to be sure of improvement, must find out what their results are, must analyse their results, to find out their strong and weak points, must compare their results with those of other hospitals and must care for what cases they can care for well, and avoid attempting to care for cases which they are not qualified to care for well … must welcome publicity not only for their successes, but for their errors. Such opinions will not be eccentric in a few years hence” (Codman, a surgeon from Boston, 1917).

Ninety one years later, Lord Darzi, another surgeon said “we can only be sure to improve what we can actually measure” in High Quality Care for All.

A set of clinical indicators have now been assembled from routine data that the NHS already collects (and sometimes, but rarely is used!). In kidney care we are fortunate to have “form” as Sir Bruce Keogh (Medical Director of the NHS) says – a “track record” or “previous”. That is in the form of the Renal Registry that collects key information on dialysis and transplantation.

The fact that the Renal dataset, covering the whole kidney care pathway has now been approved and mandated from May 2009 will also help with data completeness and quality.

The clinical indicators have been developed in partnership between the Department of Health and the Royal Colleges, comments are being sought by the Information Centre.

Clinical indicators are of course only part of quality. The Institute of Medicines’ influential report “Crossing the Quality Chasm” (2001) identified 6 aims for improvement, each of which could be considered aspects of quality: safety, effectiveness, patient centredness, timeliness, efficiency and equity.

Clinical indicators are the start point, patient experience, safety and patient reported outcomes must also be gathered if we are to achieve Lord Darzi’s vision of “High Quality Care for All”, and high quality care for all is the reason why 1.3 million people in the UK get up in the morning.

ODTF recommendations: progress report November 2008

Further to the Organ Donation Task Force's report with 14 recommendations last year read the letter and update from Chris Rudge (Transplant Tsar).

Home haemodialysis - going further, the next stage

http://www.youtube.com/watch?v=7g827_qIqdU

This is a really good video clip so if your Trust policy doesn’t allow UTube fire it home and look there.

Q & A: national renal dataset

Read Q & A

Related blogs:
Implementation of the national renal dataset
Bedtime reading: National renal dataset change notice published

bedtime reading: Renal dataset change notice published

The DSCN for the National Renal Dataset has been published - the reference number is 27/2008.

This is the legal notice requiring the service to provide the 693 data items mandated in the first phase of the national renal dataset. The notice and the requirement comes into effect on 31 May 2009.

Related blogs:
Implementation of national renal dataset
Q & A: national renal dataset

bedtime reading: core principles of transition

Transition from childrens to adult services is a ticky time. I have recently blogged about the risk and signposted the excellent e-learning available so I was pleased to be sent a copy of 'Think Transition': Developing the essential link between paediatric and adult care’ (November 2008) from the Royal College of Physicians of Edinburgh.

The document identifies the requirement to actively manage and coordinate the porcess. The care coordinator key worker model - I think that is a youth worker to you and me, and the importance of not limiting this role to health is key message. Most issues in transition are generic but this document has a good section on chronic kidney disease as well.

Two in three patients take part in patient transport survey

All the responses are now in from the National Patient Survey that took place on 15 and 16 October 2008 and I’m really pleased to hear that two thirds of all haemodialysis patients in England, Wales and Northern Ireland took part. The survey is part of the new National Kidney Care Audit, which is being run by The NHS Information Centre (IC). The audit will also look at aspects of vascular access, which will be collected from renal units themselves.

I’m glad that patients have really responded to the survey, because I think it will be an important tool for delivering better patient transport services. There was an over 90 per cent response rate in 67 of the 252 units that took part, which is great.

Separate surveys were also sent to renal unit managers and commissioners of renal services, of whom 81 per cent and 89 per cent responded respectively – an impressive figure that reinforces the commitment that people have to improving services.

The NHS IC are now analysing the survey data, and they are planning to release an interim set of results to renal units in January 2009. The full results will be published in April.

Once the interim results are published, I want to see people turning their attention to action planning because I don’t think any units will be providing the service people receiving haemodialysis need . All renal units should be thinking about how they can use the results of the audit to improve services – who is doing that in your Kidney unit? This could involve setting up action planning groups and working with patients, to learn from what works best in other areas, and see whether it can be applied locally. I know The NHS IC are developing an online resource to give practical support for action planning, and I will let you know here when this is available.

In the meantime, I am really pleased to see the progress that the National Kidney Care Audit is making, and look forward to seeing the results.

bedtime reading: machine perfusion systems and cold static storage of kidneys from deceased donors

NICE has just issued its final appraisal determination for machine perfusion systems and cold static storage of kidneys from deceased donors.

The appeal period for this appraisal will close at 1700 on 4 December 2008.

Kidney services are first speciality with a mandated operational information standard dataset

We have been working with the NHS Information Centre and UK Renal Registry (UKRR) to get a National Renal Dataset (NRD) for children and adult kidney services approved as a standard for use across England. I am delighted that the application has now been approved by the Information Standards Board for Health and Social Care (ISB HaSC).

The NRD is the first to cover the entire speciality rather than a section of the pathway and has been designed to answer all the information requirements of the NSF. The majority of data items being mandated from May 2009 are contained within the current UKRR and UKT data collections; however there are new items to be gathered which will need systems development and I have written to all clinical directors to bring this to the attention of Trust IT departments now so that any preparatory work can be started as soon as possible.

Each data item within the dataset has a name, a definition, a description and details of the values that can be recorded. Where the data item is to be derived from more than one piece of clinical data, this is also defined. The data item also has a marker to state whether it is part of an existing collection (eg UKRR) or whether it is new as well as a ‘primary information requirement’ specified as part of the definition.

Clinical terminology to support implementation in clinical systems will be published by NHS Connecting for Health.

As the NRD is a large dataset (953 data items) a phased approach to implementation by renal services has been agreed. For collection from May 2009 (693 data items), with a further 188 data items mandated for collection from April 2011.

The NHS IC is developing functionality in the Secondary Uses Service thus enabling data from UKRR and UK Transplant to be joined and linked to data for other clinical specialties; authorised users of the Secondary Uses Service will be able to access the data and run pre-defined reports or create bespoke data queries.

The ISB will now issue a Dataset Change Notice (DSCN); the formal mechanism that notifies NHS Trusts and their system suppliers of mandatory collections. It will give 6 months advance notice before collection of the data is required to start from May 2009

This exciting development, taking into account Trusts, UKRR and UKT saw over 120 people outside the IC involved with the project. Just within NHS trusts (from named contacts that we have worked with and people who responded to the consultation), I know of 96 individuals in 36 trusts, of which 54 were clinical staff, 18 Allied Health Professionals, 16 informatics staff and 8 general managers. I am particularly grateful to Bradford, Bristol, Derby, Exeter, Leeds and Norwich, the demonstration sites who have been able to return the whole dataset.

ISB HaSC will be publishing the submission document and the ISB HaSC output two weeks from 17 November 2008, on their website.

For more information please look at the National Datasets Service website. From this page you can download both the dataset specification and supporting documents, such as guidance for renal services implementing the dataset.

Related blogs:
bedtime reading: renal dataset change notification published
Q & A: national renal dataset

Bedtime reading: your health, your way, patients'guide to long term conditions

NHS Choices launched this prospectus on 5 November 2008. It outlines the services that people with long term conditions can expect to have available locally from April 2009 and is available via the Department of Health or NHS Choices websites.

Screening for chronic kidney disease: an evidence based review for the National Screening Committee

The UK National Screening Committee has considered the report “Screening for Chronic Kidney Disease: An Evidence Based Review for the National Screening Committee” produced by Dr Catherine Heffernan in June 2008. They have concluded that there is insufficient evidence to support population based screening for chronic kidney disease but that testing high risk groups may be of benefit to some groups of the population. This supports the NICE CKD guideline and the vascular checks approach.

Link to UK National Screening Committee page where the documents may be accessed under "policy updates"

www.renalfellow.blogspot.com

Keeping up to date in today’s world is increasingly difficult. Our knowledge base continues to grow at an exponential rate, the pace of life itself seems to be quickening despite our “time saving devices” of the 21st century and expectations are higher. Rightly, we no longer regard evidence based opinion as a reasonable way to make clinical service decisions.

Rather than help the situation, the internet can often result in information overload if accessed indescriminantly. Never before has getting the question right been so important.

So I was delighted to come across www.renalfellow.blogspot.com that Lazarus Karamadoukis (SpR in Bristol) signed posted to me. It has a daily update on a clinical or scientific renal issues and facilitates discussion and collaboration across the range of renal topics. The operation is slick and the sight has already got a critical mass in terms of content and participation.

Measuring quality in a challenging situation

“Quality is the organising principle of the NHS”. When I went to primary school the catechism and the times tables were still taught by rote. It wasn’t a bad way of embedding the detail in our brains but didn’t encourage a real understanding of the philosophical basis of religion or the beauty and power of mathematics. So when people challenge the above statement about quality and smile when the words co-production or subsidiarity are used in connection with healthcare I am pleased. Particularly pleased when the smile indicates a light bulb going on and is followed by demanding questions – less so when it’s a kneejerk reaction to change. So scepticism yes but cynicism no.

Well onto the subject. Two years ago I recall a conversation with Edwina Brown (Consultant Renal Physician, Hammersmith) and Jo Chambers (Palliative Care Consultant, Bristol) about quality in conservative and end of life kidney care. I said “oh well, hmm – very difficult to measure and where do you start?” Well, I got answers – there is a substantial literature on quality in conservative care – clinical indicators, patient experience metrics and patient/family related outcome measures. Since then I have learnt a lot more from people like John Ellershaw (Professor in Palliative Medicine) and Maureen Gambles (Research and Development Lead) from the Liverpool Care Pathway Team who have coordinated the “Care of the Dying Audit”.

If you are like I was 2 years ago, have a quick read of “Quality Markers for EoL Care”. If you are a member of a conservative kidney care team, download this document and get your team to review and comment.

As W Deming said “in God we trust, all others must bring data” (W Deming & K Griffin).

Bedtime reading: quality markers consultation on EOL care

The Department has launched a consultation on Quality Markers for End of Life Care (EoLC), as promised in EoLC strategy. This has been developed with help from the SHA pathway chairs for NHS Next Stage Review, who idenfitied the need for a national approach in order to raise the quality of care for people at the end of life.

Bedtime reading: vascular checks "next steps" guide

Putting Prevention First (April 2008) set out plans for the NHS to introduce a systematic and integrated programme of vascular risk assessment and management for those aged 40 to 74.

A "next steps" guide, published on 13 November, will help PCTs begin their roll out.

Q & A: Lord Darzi's report

Published in Kidney Life Winter 2008

Q: In the last edition of Kidney Life was a brief item about Lord Darzi's Report. Beyond saying this is "relevant because its findings will have an impact on some of the services" it actually said very little.

One of the key strands of the report is patient empowerment. That includes mandatory health care plans for all patients in the next 2 years. So when we see consultants a plan for our care will be produced, agreed, written out in some format, given to the patient and then reviewed at the next clinic. This proposal was in the original Renal NSF and has been ignored. It's now got to be implemented.

The report does not lay out the format of health care plans. So we don't know if they will come as a letter, or if patients will have some form of booklet to update and bring to the next clinic. What would we like to see? Should we for example have a small ring book that will take A5 documents so our plans come in that format. Should we also always get all the test results? If so should we have an explanatory page included?

I think we should have an input into the design of health care plan documents so we produce ones that are as patient- friendly as possible. Otherwise we could get lumbered with details like the repeat prescription forms that are difficult to use.

A: Thank you for your very timely question about developing Kidney Care Plans – it is at the forefront of my mind as we are nearing the halfway point of the Renal NSF.

I have established a representative group to work with me on developing Care Plans for kidney patients which will be available from World Kidney Day 2009.

The Project Group has all the key people who will have a role to play in both using and ensuing usefulness of these important documents. I am delighted that Ray Mackey and Fiona Loud are taking a very active part within this group, ensuring the project stays focused on what patients would like to see and a format that enhances their care rather than becomes a burden to it.

There are a few existing examples of care plans for other services, mental health and cancer for example which we are looking at so that we don’t re-invent the wheel. Simon as you rightly point out the mandate from The Darzi Report does not layout a format for all care plans so this is an opportunity for us to get it right.

We are keen to enable as many patients, carers and staff as possible to have an opportunity to have their say in the development of kidney care plans. A questionnaire was available for all attendees to the recent NKF Conference in Warwickshire where they could complete the questionnaire in confidence at the time, return it to us once they had had time to reflect on their thoughts or talk with Graham Roberts our project manager from NHS Kidney Care. I am delighted we have got so many responses already and those that I have seen were all very positive about the concept. Many gave us some constructive practical advice.

The Project Group has had a very productive Consensus Event to start developing the prototype care plan that we can test out with some kidney services to ensure that it works and is useful. At the event healthcare professionals and patients were in total agreement about the vision of what a kidney care plan will look like and do. The following being key points emerged:

• 'less is more' and that the care plan is no more than a means of planning care in a collaboration between the patient and the health care professional. The information giving side is far less important than the 'process' of airing key issues and making sure all involved understand the others views.
• The care plan must be a paper document, though an electronic version may be useful for those so minded. But most of our patients still deal in paper.
• BUT IT links (especially with Renal Patient View for data) are valuable, even if they should not form the bedrock of the careplan

The next steps are for the prototype to be tested with a large number of patients from the demonstration sites in Derby, Salford, Lister, Cardiff and Leeds. What we learn from these development cycles will then inform a revised care plan which we would like to test with a wider group of patients by hosting a patient focus event in partnership with the NKF. I hope this group will also work with us to start developing the second part of this project which will be to ensure implementation of the Care Plans for all kidney patients.

My vision is that from the 9th March 2009 every kidney service across England will be able to take the template care plan that we have developed and customize it meet their individual patient needs. The service needs to take up the challenge of offering care planning as a essential, modern way of partnership working, for improved quality of life for people with kidney disease.

QUOTES FROM PATIENTS AT NKF Conference 2008:

How would you feel about being more involved in planning your care?

• “An excellent idea, as patients know their own body much better and should be listened to”
• “More confident in the quality of care that I would be receiving”.
• “I think it is vital for patients to be involved in, and fully informed about, their care”.
• “I’d feel better if more involved and as though I’m actually dealing with my renal failure”.

Bedtime reading: NICE CKD guide to resources & audit support

Published on 12 November, NICE has developed the CKD guide to resources and CKD audit support guides in collaboration with the National Clinical Director for Kidney Services, the NHS Kidney Care Programme and leads from the Department of Health Renal Services Team.

See more at Chronic kidney disease on the NICE website.

Implementation of the National Renal Dataset

We have been working with the NHS Information Centre and the Renal Registry to get the National Renal Dataset approved as a standard for use across England. The application was approved by the Information Standards Board for Health and Social Care at their meeting on 5 November. Particular thanks must go to Alison Roe (Project Manager for Standards and Classifications at the Information Centre) for steering this and taking it forward.

The Information Standards Board will now issue a Dataset Change Notice (DSCN). This is the formal mechanism that notifies NHS Trusts and their system suppliers of mandatory collections. It will give six months advance notice before collection of the data is required to start from May 2009. I have written to the clinical directors to bring this to the attention of your trust IT department now as there will no doubt be preparatory work for this which needs to start as soon as possible.

The majority of data items being mandated from May 2009 are contained within the current UK Renal Registry and UK Transplant data collections; however there are new items to be gathered which will need systems development.

Details of both the new and existing data items are provided in the dataset specification and guidance documents produced by the NHS Information Centre. These are available to download from the IC website.

This is an exciting development. Kidney Services has the first speciality-wide mandated operational information standard. This will be the basis of our quality metrics recently given so much coverage in the press. Taking into account Trusts, UKRR and UKT, there have been over 120 people outside the Information Centre involved with the project. Just within NHS trusts; from named contacts that we have worked with and people who responded to the consultation, I know of 96 individuals in 36 trusts, of which 54 were clinical staff, 18 Allied Health Professionals, 16 Informatics staff and 8 general managers. I am grateful to Bradford, Bristol, Derby, Exeter, Leeds and Norwich, the demonstration sites who have been able to return the whole dataset.

Raising awareness of kidney disease

Tim Statham, CEO of the National Kidney Federation (NKF) sent me a link to these 7 raising awareness posters which can be used in conjunction with World Kidney Day (12 March 2009).

Getting the public to understand kidneys in the way they understand cholesterol is a key long-term goal. The kidneys are such amazing organs, in both health and disease, that the woman on the top of the Clapham omnibus should be interested. The fact that acute kidney injury is so common - over 5% of hospital admissions, and that chronic kidney disease even moreso, affecting over 10% of the adult population, means whoever you are reading this you must know many people with kidney disease.

Over the last year when I have been sitting on trains working away with kidney papers strewn around me, my fellow passengers frequently remark about a parent or relative who has recently been found to have kidney disease. The knowledge they have however is often pretty poor or downright wrong.

Those of you who have heard me talk know that I often quote Sir Muir Gray "knowledge is the enemy of disease" indeed I have a slide of that title showing the graph (from Strippoli et al. JASN 15:411-419, 2004) of randomised control trials in different medical disciplines. It's a cause of frustration that kidney research has fewer trials than all the other big killers. Knowledge is more than data and results from trials. Raising the knowledge base about healthy kidneys and how to keep them as healthy as possible is now a real opportunity given the visibility that the introduction of a chronic kidney disease domain into the Quality and Outcomes Framework and the systematic reporting of estimated GFR has given kidney disease.

So wherever you are working why don't you put one or more of these posters up. They will get people thinking and asking questions. If you are a teacher like my wife Marie and sister in law Barbara or you work directly with groups of people of any age you have a golden opportunity. Take it.

Changes to the law; but why involve people in their care and their services?

The simple answer to that question is involvement leads to satisfaction and yet we know that about half of all hospital inpatients say that they are not as involved as they want to be in decisions about their care. Those who are not as involved in the decisions as they would like to be are less likely to understand the purpose of their medicines or other interventions and are unlikely to understand the problems or side effects of treatments. This will affect adherence and outcomes. We know that when people feel fully involved in treatment decisions that approaching 90% are satisfied with services and this falls to only 50% when people feel excluded from the decision making process (http://www.pickereurope.org/).

The draft NHS constitution hasn’t occupied much space in the papers, waves or indeed this blog in comparison to, for instance, the Richard Review or top up payments Lord Darzi’s promise is “you will be involved”. The constitution says patient should have the right to full information about all available treatments, the right to be involved in discussions and decisions about their care. That fits with Standard One of the Renal NSF: “all children, young people and adults with chronic kidney disease are to have access to information that enables them with their carers to make informed decisions and encourage partnership in decision-making with an agreed care plan that supports them in managing their condition to achieve the best possible quality of life.

It sounds good or does it sound like motherhood and apple pie?

The NHS Act 2006 section on the “duty to involve” came into force this week on 3 November 2008. This duty requires NHS organisations to involve users of services in planning and provision of services, the development and consideration of proposals for change in the way services are provided and decisions affecting the operation of services. Trusts should be taking this statutory obligation seriously, the kidney patients and KPAs should be encouraged to participate to ensure that people with kidney disease have a voice in this process.

The NHS Next Stage Review says “you will be involved. The local NHS will involve patients, carers, the public and other key partners. Those affected by proposed changes will have the chance to have their say and offer their contribution. NHS organisations will work openly and collaboratively”.

The duty to involve is not just an organisational duty. It is also a responsibility of each of us in the health services and that’s not just clinicians. People want information about the services they use, people want information about the options available to them, people want information about what their condition’s likely to mean for them and what the medicines and other treatments might and might not do. Some of this is available in the excellent Kidney Research UK DVD “living with kidney disease”, we are beginning to put information about services on NHS Choices but there’s no substitute for a face to face discussion with individuals – explaining out patient appointment procedures, explaining why a change in diet can be beneficial or engaging in a discussion about the uncertainty of future events. Involvement leads to satisfaction, satisfaction leads to better outcomes, it’s our duty to involve people in decisions about their care.


Real involvement: working with people to improve services

BREAKING NEWS: Kidney Research UK raises the bar ...

Kidney Research UK has been awarded a substantial grant of £449,141 from the Big Lottery Fund to run a 4 year project to examine current best practice in end of life care for kidney patients from minority ethnic groups and to find ways to help them better cope with their conditions.

Nearly 20% of the 6000 people awaiting a kidney transplant are from a South Asian background. Many of these patients will not be suitable to receive a transplant due to ill health or lack of matched organs and they may therefore require end of life care.

Read the full press release here

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.

Innovation in Kidney Care

The British Journal of Renal Medicine has been promoting excellence in kidney care for over a decade – the Journal is sent free of charge to over 3500 kidney care health professionals. Practical articles, insightful commentary on key issues, signposting of resources including the flagship “What I Tell My Patients” series arrive in every issue. John Bradley (Editor and Consultant Renal Physician at Addenbrookes Hospital in Cambridge) and Chris Tidman (Publisher and Managing Director) went one stage further by establishing the Renal Innovation Awards, now in their 5th year. This has shone a light on the work and practice in many kidney units up and down the land. What is evident is a culture of teamwork, problem solving and real desire to improve things for people and families with kidney disease.

It was therefore a great pleasure for me to attend this year's kidney care innovation awards which were sponsored by Shire Pharmaceuticals. The entries gave the judges a tough time marking because they were all good!

A reception and lunch was held at the Institute of Directors on Pall Mall in London to celebrate the awards and John Feehally, immediate past President of the Renal Association gave a memorable talk about his visits to every single adult and paediatric kidney service in the United Kingdom in the years 2004 and 2007. Highly commended projects were:

“Creative Art for Patients during Regular Hospital Haemodialysis Sessions” (Regular Dialysis Unit, Inverclyde Hospital, Greenock); spending 12 hours a week on a dialysis machine can be a demoralising experience for patients. The introduction of an artist and art programme to the Inverclyde Dialysis unit has led not only to a remarkable positive transformation of patents' lives but also a collection of art that has been widely exhibited.

‘Phosgraph: A Novel Method of Improving Patient Compliance and Phosphate Control by Education and Competition (Renal Unit, Southend University Hospital NHS Foundation Trust); control of phosphate can be one of the most difficult aspects of management in CKD - Dr Patrick Harnett and colleagues in Southend developed a simple method to allow patients to compare their phosphate levels with the normal range and their peers. With dietetic input this led to a significant improvement in those with increased phosphate levels

“A Nurse-Led Multidisciplinary Predialysis Clinic Improves Outcomes and Survival of Patients on Dialysis” (Renal Department, Birmingham Heartlands Hospital, Heart of England NHS Foundation Trust); starting dialysis is a daunting experience. Sister Annette Dodds and colleagues established a truly Multidisciplinary Team including specialist nurses, dieticians, social workers, vascular surgeon and nephrologists to ensure patients are psychologically and physically prepared for dialysis. There have been some impressive results with, for example, reduced hospital admission and improved haemoglobin levels

Awarded 3rd place (with a prize of £1000) was “Introduction of a Prescribing Decision Tool to Optimise Antibiotic Prescribing on a Busy Renal Ward (Victoria Ward, Royal Berkshire NHS Foundation Trust); Heathcare Associated Infections are particularly prevalent in renal wards, worrying patients, health professionals and the government. Dr Emma Vaux and colleagues at Royal Berkshire have developed a simple antibiotic prescribing test on a busy renal ward, leading to a wide range of improvements in the management of infections in renal patients.

The Barts and The London NHS Trust, a previous winner were placed in 2nd place this year (prize of £2000) with work on “A Patient-Centred Renal Supportive and Palliative Care Service”; Establishing a truly comprehensive supportive care service for patients with ESRF who opt not to have dialysis is challenging. Alistair Chesser and colleagues at Barts and the London NHS Trust have achieved this allowing patients receiving palliative care to improve their quality and length of care and allow patients to die in their preferred place of care.

Dr Eddie O’Riorden, with Renal Nurses Joanne Gregson and Fiona MacDonald accepted the 1st place (and prize of £5000) on behalf of the Department of Renal Medicine, Salford Royal NHS Foundation Trust for “Developing a New Community Dialysis Facility using a Continuous Quality Improvement Approach (Wigan Satellite Dialysis Unit, Boston House, Wigan); dialysis is about more than correcting biochemistry. Dr Janet Hegarty and colleagues have used a quality improvement approach to develop a community based dialysis facility that focuses not just on quality of care, but also patients and staff experience. The results are impressive. Read more about these projects in the forthcoming special edition of the BJRM and see interviews with the successful teams at http://www.kidneycare.nhs.uk/ over the next few months.

NICE Guidelines on CKD communications

Chronic Kidney disease affects more than 1 in 10 people. It is a potentially dangerous condition. If kidney disease is not recognised people with the condition may have up to 35 times higher risk of premature death. Kidney disease is a silent killer. People with kidney disease have few or no symptoms until kidney function is severely impaired. It is, however, very easy to detect kidney disease in the early stages – a simple blood test and a urine test for albumin/protein is all that is needed. We know the conditions that can damage the kidneys for example high blood pressure, diabetes or a family history of kidney disease. And the good thing is that we have treatments that can delay or prevent further kidney damage. This NICE guideline on kidney disease will help healthcare professionals identify people in the early stages who can then be treated – it thus has the potential to delay progression of disease and extend the lives of thousands of people.

Pilots helping the National Kidney Care Audit take off

1. I’ve written about the National Kidney Care Audit on this blog before, and a pilot patient transport survey has just gone really well by all accounts.
   
   On 15 and 16 October all renal units in England will be carrying out a patient transport survey – please make a note of this in your diaries, if you haven’t already done so. Ahead of this, 12 units in London, Bristol and the North West have just taken part in the pilot, covering almost a thousand patients.
   
   “It was fine here, we’re quite a small unit so it was easy to give the survey out to patients, monitor them and collect the surveys back in,” the Clinic Manager at the Camden Dialysis Unit Jane Moore commented.
   
   The units have told us that the pilot went really smoothly and I’m pleased to see that it didn’t disrupt their day to day work. The project team at The NHS Information Centre who are carrying out the audit have taken on board some comments from participants. They will be simplifying the wording of a couple of questions to make them easier to understand – especially for patients whose first language is not English.
   
   Most importantly, feedback is that the patients were really positive: “the patients are definitely engaging with the audit, especially because most of them use transport services,” Jane Moore said. “It’s always worth being involved in audits because you can have your say. People complain about issues like patient transport, but taking part in the audit will allow you to contribute.”
   
   I’m very grateful to everyone that took part in the pilot, and would like to pay personal thanks to all the staff and patients at the Bristol Royal Hospital for Children, Royal Liverpool University Hospital, Broadgreen Hospital, Whiston Hospital, Warrington Hospital, St Bartholomew's Hospital, The Royal London Hospital, Camden Dialysis Unit, Whipps Cross University Hospital, the Queen's Hospital Romford and Evelina Children's Hospital. I think the National Kidney Care Audit is an important piece of work that will bring real benefits to kidney services.
   
   For more information on the audit and how you can sign up to take part, you can visit www.ic.nhs.uk/kidneycareaudit or e-mail kidneycare@ic.nhs.uk

Q & A: Criteria for place of maintenance haemodialysis

Q I wonder if you could help me? I have received a query from one of the Renal Centres as to whether there are criteria on deciding if patients are suitable for dialysing in a Centre or a Satellite unit. We do not seem to have one – do you know anyone who does? Nesta Hawker, Specialised Commissioning Manager, NW SCG

A Dear Nesta, thanks for your enquiry. I think the principles are probably applicable across units and commissioning areas but the specific criteria may well depend upon local factors and to be workable I think the criteria need to be owned by the local renal communities – within that group I obviously include renal commissioners and renal patient groups.

Patient safety is paramount and convenience for the individual undergoing dialysis (and their family members/carers – in some instances) are important considerations. For the majority of patients for most of the time this should mean dialysis in the facility closest in travelling time to their home.

Over the past 15 years I have seen a change from the philosophy that only fit and healthy patients can be dialysed in a satellite unit, but those with co-morbidities need to be brought into the centre where there is easier access to medical or more intensive nursing support, to a realisation that bringing sick people long distances actually increases their dependence and can reduce their quality of life such that many units would now expect that all patients are dialysed in the unit closest to their home. To quote Donal Rumsfeld “stuff occurs” such that around 15% of patients at any one time need to be managed in the central unit – because they are admitted and need dialysis from the ward, because they are attending other departments only available at the inpatient centre or because of access problems.

One aspect of a quality service that I would like to see debated in more detail and potentially measured as a marker of quality is starting dialysis as an outpatient via an AV fistula – we used to consider that the first dialysis should occur in a central unit but am not sure why it couldn’t be planned to start in a satellite unit with appropriate staff and facilities on hand. Haemodialysis is a “much gentler” procedure now that it is bicarbonate based and the flows can be regulated to individuals’ tolerance such that even severe cardiac disease should be able to be managed in both satellite and central units.

I have heard people argue that only those with uncontrolled psychiatric illness or the rare patients with a severe personality disorder need to be routinely managed in a central unit.

Nesta, I know you will be raising this at the North West Renal Strategy Groups and the Specialised Commissioning Forum in September. I will be interested to learn the views of others and will return to this issue in the blog after these events.

Kidney Care – what you told us

Kidney Care is a new NHS organisation that has been established to help deliver the goals of the NSF for Renal Services. I am sure I don’t need to remind readers of this blog that our NSF covers adults and children and aims to improve the experience and outcomes for all people at all stages of kidney disease.

The NSF has set a high bar in a number of key areas – targeted screening of those at risk of CKD, information in care plans for all those with kidney disease, systematic management, multiprofessional preparation for renal replacement therapy, pre-emptive transplantation where possible, improved vascular access, improved transplant services, choice of modality of dialysis provided round the needs of the individual and full supportive and palliative care for those who choose the “no dialysis” option.

In the last few years we have made progress in all these areas. Primary care is now aware of kidney disease. A lot of attention has been focussed on the year before “RRT” including improving vascular access and reducing healthcare associated infection. “Organs for Transplantation”, has been published and all 14 of its recommendations have been accepted. We hope to increase donation after death kidney transplantation by over 50% in the next 5 years. Investment plans for dialysis have been drawn up in most localities.

Good solid process, thanks in no small part to each and every member of the wider kidney community. Kidney Care NHS has been formed to help you go further and go faster to improve individuals’ experiences and where possible, outcomes of kidney disease. Kidney Care is an improvement team with a difference – it has been shaped by the views and opinions of the kidney community. Over the past 8 weeks many of you had the opportunity to comment on what is needed, what should be done nationally, what can only succeed locally and how kidney care should link with your team, your networks, how kidney care can help you deliver or receive an even better service. In that time, not a day has gone by without views being expressed – in meetings, on the phone, by email. All the major kidney care organisations, all types of professional staff and, most importantly, individual patients and carers have contributed to this listening exercise.

So what did you tell us? That there is a lot of good practice and lots of examples have been provided, that we shouldn’t reinvent the wheel, that some things are better done nationally rather than fragmented and that to really change experience and improve outcomes needs local engagement of all the partners providing care. The structure, priorities and the culture of kidney care will be true to these big ideas and ideals.

I see Kidney Care as the oil that lubricates the system of care that is the NHS, that helps the clinicians and institutions respond to the needs of individual patients, that supports transformational change. It will not bring another layer of beaurocracy, it will not involve new central targets, it will not try and fix what isn’t broken to fit with some new policy idea. It is there to work with clinical staff, commissioners and regulators and to respond to service users’ needs.

You have told us that knowledge management – I prefer to call it sharing best practice and improving the evidence base – for kidney care, information and informatics and communication are national functions. That we should use the new technology where possible to support the kidney community.

Over the past year I have seen many examples of excellence, visited practices at units where aspects of kidney care have reached the next level and have been humbled by what teams, sometimes with minimal resources, have achieved in partnership with patients and carers. At times I think the new skills I am acquiring would be very useful in setting up a “dating agency” – or as the blurb says “it always gives me a warm feeling when I can put 2 teams or individuals together and see them solve patient related problems together”. I am concerned that needs to be put on a more systematic and robust footing and therefore will be establishing a Kidney Care Knowledge Management Board to advise on identifying, quality assuring and signposting good practice. Part of that Board’s role will also be to spot the gaps in the evidence base, advice on how these gaps are to be plugged and to help develop and promote tools to speed and improve uptake of projects and ideas that have proved successful in other settings.

The health service is good at collecting data, the problem is it is often wrong – failure to record or poor coding can give some very strange looking results. In the kidney community we are very fortunate to have the Renal Registry which provides a source of high quality information about patients once they have started renal replacement therapy. The Registry staff then spend a lot of time working with units to ensure that data is as good as it can be. Often however the outcomes on dialysis are directly related to the management in the months or years prior to the initiation of replacement therapy. I am therefore very pleased that our recently commissioned national audit of vascular access examined care prior to as well as on dialysis. There is a need to turn the data that is collected across the whole pathway from risk on early kidney disease through to replacement therapy or supportive palliative care into relevant information. We need to derive quality metrics for each part of the pathway if we are to use the information to understand where we need to take action to improve safety, experience and outcomes. Better information and better informatics - the linking of the data will help generate better knowledge and “knowledge is the enemy of disease”.

Delivering best practice means ensuring the right people use the right information at the right time. Getting information and turning it into knowledge is one of the key skills of clinical and care teams. But where to start – the library, the internet, the journals, conferences – today’s problem is too much information! In a way, it is easier for specialist practitioners – having to know only about kidney disease does seem easier that having to know about all health issues that our colleagues in primary care must grapple with. I would argue it is not necessarily easier but different and we all are at risk of information overload. So our communications strategy from Kidney Care will try and link with the learning opportunities that already exist for renal healthcare professionals and all the many others involved in providing care for people with kidney disease. People learning different ways – we must try and tailor continuous professional development to these differences.

bedtime reading: Implementing a National Vascular Risk Assessment Programme - Final Report of the APPG

This report from the Joint APPG on vascular checks provides an update on the work to intruduce vascualar checking, including checks for kidney disease, for people aged 40 to 74 from 1st of april 2009. It gives a flavour of the views from the different clinical communities - Kidney care, Heart Disease, Stroke and Diabetes .

Q & A: Nocturnal dialysis

Published in Kidney Life, August 2008

Q: Dear Dr O’Donoghue, I would like to ask what you think about Nocturnal Dialysis and how it could be offered more freely to those patients already on Home Haemodialysis (HHD)? I understand there are tremendous benefits to be had from long, slow dialysis overnight which is gentler on the heart and clears more toxins from the body, enabling some patients to come off various medications, resulting in a much better quality of life.
It would be interesting to know what machines are used for this type of dialysis, and how the costs stack up against the usual type of HHD, so that I, and other patients in my situation, can discuss this more fully and knowledgeably with our consultant. Marion Higgins, HHD patient.

A: “Dialysing 6 nights a week for 8 hours each time has made an amazing difference to my health. The toxins in my blood are really low, I’m taking no medication, my blood pressure is normal and my haemoglobin levels have stabilised without injections.” This quote is from Patrick Pearson-Miles who manages his haemodialysis at home with the support of the Guys & St Thomas’ Hospital Team. Patrick’s elegant words convey the impact that nocturnal dialysis can have, in suitable individuals, much more powerfully than I could do. At a push I could explain the physics of why frequent, that is more than 5 times per week, sometimes called daily or quotidian (Latin for daily) dialysis, even for short periods of time – such as 2 hours per session – is more efficient at removing some waste products than conventional 3 times a week haemodialysis. Other impurities and toxins such as phosphate respond better to longer – overnight, called nocturnal dialysis. Frequent, long dialysis combines the best of both approaches but what you probably want to know is how that can affect the experience of being on dialysis. So, over to Patrick again “I’ve eaten mushrooms have had home-made banana milk-shakes and even celebrated with my first pint in 12 years, all of which would have been unthinkable under the old system”. Nocturnal home haemodialysis therapy has been around since the 1960s when it used to be the usual way of delivering long, slow dialysis. In the 1960s and 1970s many patients dialysed overnight three nights per week. They felt well. Survival rates in Tassan, France which has reported most extensively on this model of dialysis, were among the best in the world. Although home and night time dialysis have declined since 1980, due to the growth of hospital and satellite based dialysis, there has been a renewed interest in the therapy in recent times as frequent nocturnal haemodialysis has a substantial impact on survival and quality of life in patients on dialysis.The therapy can be performed safely at home at night allowing long hours and/or frequent dialysis. The dialysis itself is performed with essentially the same equipment as other home haemodialysis patients use.

The main differences from standard haemodialysis are in the lines used, which have to be longer than normal lines to allow for movement whilst asleep and more secure attachment of the lines with a blood leakage alarm as a safety feature. Typically it is performed with slower blood and dialysis flow rates, which provide clearances far in excess of any other dialysis modality. Most patients choose to dialyse for as long as they sleep at night. The dialysis schedule can be tailored to an individual’s need taking into consideration diet, sleep patterns and biochemistry. The longer hours provide excellent biochemical control, including phosphate and blood pressure. People can stay on a more liberal diet and fluid intake, and usually do not require phosphate binders or blood pressure medications. Some patients may even drop their phosphate levels too low requiring additional phosphate supplementation in the dialysis fluid, although this can also be managed by increased phosphate intake in the diet.

Now, not everyone is suitable for home haemodialysis, but if you are you are entitled to receive dialysis customised around your individual needs. The National Service Framework for Renal Services guarantees that ‘renal services are to ensure the delivery of high quality clinically appropriate forms of dialysis which are designed around individual needs and preferences and are available to patients of all ages throughout their lives’ (standard 4) and goes on to state that ‘all dialysis methods should be available interchangeably for patients including home haemodialysis’.

If you are reading this and thinking that home dialysis or nocturnal haemodialysis is something you might want to consider (and why not?), I would recommend Googling nocturnal haemodialysis and looking at http://www.nocturnaldialysis.org/ and looking at the "am I suited to nocturnal haemodialysis?" section. It is well written and identifies 4 key factors to determine your suitability for nocturnal home haemodialysis:

• you must want to take control of your care
• you must be physically capable of self care
• you must be mentally able to learn to run your own machine
• you must be emotionally stable and able to make decision.

People who take an interest in and control of their care get much better outcomes than those who don’t. The subjective experience of living on dialysis is not only much better for people on daily dialysis but the outcomes are also much better – survival is longer and hospitalisation is less. In many studies, the cost of daily dialysis when hospitalisation and drug costs are counted is reported to be lower than conventional haemodialysis. There are some practical issues related to increased use of heparin and larger bicarbonate bags and it is important to get these right to avoid triggering alarms and disrupting sleep. A noisy reverse osmosis unit can be a potential barrier but can be overcome by choice of reverse osmosis system and its location. Dialysis away from home may have to be a conventional treatment as not many holiday units will provide such long hours of dialysis. Most patients tend to cope well on shorter hours for a brief period without significant problems.

In recognition that home haemodialysis is often but not always prescribed as a 5 or greater times per week therapy, I have recently recommended to the NHS financial teams that this should be reflected in the average costs. Water and electricity costs are reimbursed by the renal unit as appropriate for the length of the treatment pro rata. There are no additional significant setup or maintenance costs for performing the home dialysistreatment at night but the renal unit will have to provide a helpline and out of hours technical support in the event of any problems.

Nocturnal haemodialysis can have a great impact on independence & quality of life with superior outcomes and should be encouraged in all patients on home dialysis. If you wish to consider this therapy as an option, discuss it with your dialysis nurse and seek advice from your own consultant. You could also talk to several other patients or experts in the UK who are currently practise nocturnal haemodialysis either through the Kidney PatientAssociation or by directly contacting myself so I can put you in contact with such teams and patients.
Finally, let me leave the last word to Patrick: “the biggest plus is I now have 7 free days. Before, four days a week involved dialysis, which really affected my life and ability to work”.