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