Patient centred care

Planetree, named after the tree under which Hypocrates taught his students in conjunction with The Picker Institute have produced a patient centred care improvement guide. It identifies the core concept of patient family centred care as

Dignity and respect: Health care practitioners listen to and honour patient and family perspectives and choices. Patient and family knowledge, values, beliefs and cultural backgrounds are incorporated into the planning and delivery of care.
Information sharing : Health care practitioners communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Patients and families receive timely, complete and accurate information in order to effectively participate in care and decision making.
Participation : Patients and families are encouraged and supported in participating in care and decision making at the level they choose.
Collaboration : Patients and families are also included on an institution-wide basis. Health care leaders collaborate with patients and families in policy and programme development, implementation and evaluation; in health care facility design; and in professional education, as well as in the delivery of care.

It also has a neat section dispelling some of the myths of patient centred care such as it’s too costly, it’s not really important, it’s the job of nurses, there’s no evidence, we don’t have the staff.

The document is packed full of examples and tools that could be adapted and adopted.

I was pleased to see, on page 211, one of my favourite Ghandi quotes

“you must be the change you wish to see in the world”

It’s a great manual and source of ideas.

bedtime reading: Clostridium difficile infection: how to deal with the problem

All healthcare staff should take personal responsibility for good infection control practice. Doctors and nurses should apply the following mnemonic protocol (site) when managing suspected potential infectious diarrhoea:

S Suspect that a case may be infective where there is no clear alternative cause for diarrhoea
I Isolate the patient and consult with the infection control team (ICT) while determining the
cause of the diarrhoea
G Gloves and aprons must be used for all contacts with the patient and their environment
H Hand washing with soap and water should be carried out before and after each contact with
the patient and patient’s environment
T Test the stool for toxin, by sending a specimen immediately

You can read the full guidance here. Does your renal unit have a designated link clinician working with your Trust’s anti microbial management team?

Q & A: will travelling become more difficult for haemodialysis patients if hepatitis carriers increase?

Q: When patients dialyse at another unit it is general practice now to provide the temporary unit with blood results confirming that the patient is hepatitis free. It also seems some kidney units have a policy of isolating patients for 3 weeks on their return from dialysing in another unit in the UK to ensure cross infection does not occur. How big a problem is this and will travelling become more difficult for haemodialysis patients especially abroad, if the number of hepatitis carriers increase?"
Bindu Chauhan, Chair of Leicestershire KPA

A: Dear Bindu, safety and infection control are essential quality factors in kidney units. In the early years of dialysis, outbreaks of hepatitis B virus were a major risk. In Manchester and Edinburgh, the consultants I trained under were acutely aware of these problems, having seen patients and colleagues die after contracting hepatitis B on the dialysis unit. Hepatitis B can be highly infectious, even a small and invisible to the naked eye blood spray – that occurs every time a fistula is needled, or coming from the machine – can infect members of staff or a patient if they are too close. The frequency of hepatitis has markedly improved over the past 20 years as a result of general, universal precautions, machine design, hepatitis immunisation, blood transfusion screening and isolation. The last UK survey showed a hepatitis B virus carriage rate of 0.5% and a hepatitis C virus infection rate of 2%. So the risks of hepatitis and other blood-borne viruses remain real and have been contained rather than eliminated.

Over the last decade the major infection problem in kidney units has been bacterial rather than viral infections. Bacterial infections are spread in different ways and you are probably aware that dialysing through a neckline rather than a graft or fistula is the main risk factor. That is why we placed such emphasis on improved vascular access and setting the target that every patient should have a fistula created 6 months before starting dialysis in the Renal NSF. Of course a small proportion of people can’t have fistulas made for technical reasons. So, like viral precautions, precautions against MRSA need to be strictly enforced. Such an approach has seen more than 50% fall in the incidence of MRSA bacteraemia in England.

The best ways to reduce the hepatitis B risk is to vaccinate against the disease. But people with advanced kidney disease and those on dialysis often don’t sero-convert - by that I mean the vaccine doesn’t, work. It is therefore important that hepatitis B vaccine is given early, long before dialysis is needed, so that it works and provides the same protection for people when they need dialysis as it does for people without kidney disease.

Every patient with chronic kidney disease who might eventually dialyse should receive hepatitis B immunisation.

The constraints on dialysis away from base units imposed on kidney patients within the UK is a continuing challenge. I have therefore asked Bob Dunn (NKF National Patient Advocacy Officer) along with a working group, to collect the evidence and make recommendations for improvement on this issue. I have worked with Bob form the start of the NSF and he has taught me as much as any of the consultants who trained me and they were the best in the world. Bob of course had taught me different things – so I was thrilled when I read of his MBE award to services to healthcare in the New Year’s Honours List. I look forward to the Dialysis Away from Home Base Unit report and expect real improvement from the recommendations. People on dialysis should be encouraged and supported to have holidays. There are many reasons to travel around the country – for family events, work, sport – so why should people on dialysis be further restricted?

Quality is the organising principle of the NHS - you can’t have quality without safety, so infection control procedures and vigilance must be the watchwords on kidney units. Units know the viral status – infected, carrier or clear from viral infection – of every patient they provide dialysis for, even if it’s only one session. This approach and our zero-tolerance approach to MRSA, has made UK kidney units amongst the safest in the world. So quarantine or isolation on return from dialysis in other UK units is not normally needed. Several countries have similar high standards of care and use the same universal precautions we have developed. In some other countries, however, the safety record is much worse and in some the risks of contracting hepatitis are, frankly, high if you have not been successfully vaccinated. You should discuss this with your dialysis team and the NKF when considering travel. On return from abroad therefore, a period of quarantine of up to 6 months is often needed if you have received dialysis in a country without the same high standards of infection control as the UK.

published in "Kidney Life" magazine Spring 2009

Contracts, Help, Advice & Information Network (CHAIN)

Here is an opportunity to register with the Contacts, Help, Advice & Information Network (CHAIN), an international e-communications system that I can recommend. I am sure you will have much to contribute to this important medium for sharing best practice and knowledge transfer.

CHAIN, originated 12 years ago in the NHS Research & Development programme in England and has since grown into a not-for profit international online community of over 7,000 people who are willing to share their knowledge and experience with each other. The community includes frontline healthcare practitioners from all professions, managers, educators, researchers and knowledge specialists. It is currently funded by a consortium of 12 supporters including the National Institute for Health Research, NHS Institute for Innovation & Improvement and Macmillan Cancer Support. In Scotland, CHAIN is sponsored by Robert Gordon University, the Scottish Government Health Directorates and the Scottish School of Primary Care, and in Ireland CHAIN is sponsored by the Institute of Public Health in Ireland and the Health Service Executive (Republic of Ireland). Sister networks exist in Canada, Australia and Scandinavia forming an international pool of tacit knowledge and mutual support for health care professionals.

Recent developments also include the establishment of facilitated sub-groups focusing on Mentoring & Coaching, Self-management of long term conditions, Improving Patients’ Experience, Quality Improvement and Patient and Public Involvement.

Membership is FREE, and members may join the network, update their records or leave at any time Go to the CHAIN website for further information (including an external evaluation published in BMJ), and an online joining form, (click ‘Join’ for the membership form).

Patient Reported Outcome Measures in Kidney Care (PROMS)

Patient related outcome measures are measures of a patient’s health status or health related quality of life. They are typically short, self completed questionnaires, which measure the patient’s health status or health related quality of life at a single point in time. PROMS are now part of the NHS landscape.

“Effectiveness of care. This means understanding success rates from different treatments for different conditions. Assessing this will include clinical measures such as mortality or survival rates and measures of clinical improvement. Just as important is the effectiveness of care from the patient’s own perspective which will be measured through patient reported outcome measures (PROMs) …”. Lord Darzi, High Quality Care for All, June 2008

PROMs are a means of collecting information on the clinical quality of care delivered to NHS patients as perceived by the patients themselves. From 1 April 2009 routine collection of PROMs for hip replacement, knee replacement, hernia and varicose vein surgery will be required as part of the standard NHS contract for acute services. Detailed guidance on the PROMs data collection model, monitoring and managing performance have recently been published.

PROMS, or quality of life measures have been used in kidney disease in research but as far as I am aware, not as part of the service specification. Research in this area is important to tell us which generic quality of life instruments will allow comparisons across medical conditions but we are also likely to need disease specific instruments or instruments designed to capture symptom burden during different modalities of replacement therapy.

For kidney disease and other long term conditions the PROMS ideally should provide comprehensive measures across the whole pathway from the period of choice before replacement therapy through to transplantation, dialysis and/or conservative care.

Well conducted research studies can help identify components of care or patterns of practice associated with better patient reported outcomes. It can also measure the effect of interventions – such as establishing a peer support programme. By putting PROMS in the service specification and commissioning contracts the whole process of engaging the service with the views and experience of the users, people with kidney disease, can be systematised.

For kidney disease the first stage is to identify what has already been done. Fergus Caskey (Consultant Renal Physician, Bristol) has been advising on what such a literature review should include and what methods should be used. Fergus has had training in development use of quality of life measures, initially as a Research Fellow in Aberdeen but subsequently both in Germany and at the UK Renal Registry in Bristol. It is important that we get information concerning what is already known and what has already been done that covers all stages of CKD and AKI in both adults and children. In time this may link to the best practice tariff for dialysis and other initiatives aimed at promoting quality of kidney care as the organising principle for our services. More about that later.

Preparing for end stage renal disease

The NHS Institute for Innovation and Improvement have produced the first newsletter of the High Volume Care Kidney Project. It reports on progress with implementing the findings of the Preparing for End Stage Renal Disease Project, conducted by the Delivering Quality and Value team over the past year. The aim of that project was to answer the question "what are the aspects of an efficient clinical pathway from diagnosis to end stage renal failure to assessment and placement on the transplant list?" by focussing on the year leading up to renal replacement therapy. One thing I notice was that the images in the newsletter were exclusively of people receiving in-centre haemodialysis and hospital settings. I certainly shouldn't be critical of that - even in some early CKD articles, picture of people on haemodialysis have been used to illustrate what kidney disease is. John McCarthy at Renal Freedom pointed out to me the importance of using realistic images that cover the spectrum of modalities including conservative care. Our images also need to move from those of patients receiving treatment to pictures of people getting on with their lives as well as managing or receiving kidney care. The focus now is on prototyping and testing the products produced by Michelle Webb, Catherine Davies and Jeri Hawkins including:

• a Peer Support framework to other specialised commissioners
• a framework and guidance for setting up a patient befriender service
• tools and guidance for streamlining clinics - aimed primarily at hospital teams but also providing guidance for commissioners

Listen to Michelle Webb talk about the programme.

The Institute team are seeking partners to review the tools using either an online survey or to be involved in a more in-depth facilitated testing scheme. If you want to take part in the testing and introduction of these innovative products you can contact the team at renal@institute.nhs.uk

Renal NSF update February 2009

The NSF update for February 2009 is available here

World Kidney Day - 12 March 09 - what are you planning locally?

Kidney disease is common, harmful and treatable. Globally, World Kidney Day is gaining momentum. Here in the UK we were one of the first countries to have a comprehensive early kidney disease programme. Primary care are identifying increasing numbers of people with kidney disease. Those individuals and their families need information and support to help reduce their risks of future vascular events, acute kidney injury or progressive kidney disease.

I am delighted that there is such a high profile and recognition of kidney disease nationally. Ministers and senior members of the Department of Health and NHS are aware of the link between kidney disease and vascular disease, and know of the importance of early detection and preparation to give people choice of modality or the conservative kidney care pathway and recognise the need for expansion of both dialysis services and implementation of the transplant plan.

What are you doing locally to raise awareness? Have you thought of putting the NHS Choices Kidney Disease risk assessment tool onto your organisation’s screensaver or website on 12 March?

There are lots of materials to download from the WKD website.

I would also encourage you to look at what other people are doing and to unashamedly steal good ideas and modify them for local use.

Please do encourage your clinical management patient group and family, friends and colleagues to get involved in WKD and why not upload what you are doing locally onto the WKD site?

Patient choice - does it matter that much?

Such a thought! Not politically correct at all. I dare anyone to have it – particularly on a day Carol Thatcher was sacked by the BBC’s “The One Show”!

Establishing a partnership, informing people with risks or kidney disease, supporting them in turning that information into knowledge about their medical condition and listening to their views and aspirations are central to good medical care. So patient choice is paramount.

“Choose and Book” however has got a bad name, certainly in the medical community. Partly I think because of the implementation delays and problems, partly maybe because picking from a list without knowing what the menu says, looks like choice but isn’t really; but also, the clinical community, at times, fail to appreciate the concerns of our public. The recent National Patient Choice Survey shows that hospital cleanliness and low infection rates were selected most often (by 74% of patients) as an important factor when choosing a hospital.

Increasingly people are remarking to me that they have been given a choice – they ask where to go for their cardiology or urology appointment – the reputation of the service seems to be one of the most important things in making a decision. Infection rates are a key part of that reputation.

One of the things that often taxes me is trying to get a handle on the quality of choice that we offer people with advanced kidney disease. I was struck by the patients’ perceptions reported in the Study of Implementation of Renal Standards (SIRS) that Anu Trehan (now an Acute Physician, Salford Royal) showed, revealing that the vast majority of patients felt either that there was no choice of modality or that the doctor or nurse had made the choice. That was a study of over 1000 consecutive patients in the North West of England in the earlier part of this decade – all the services thought they were offering choice! If there isn’t a local dialysis unit or an assisted peritoneal dialysis service do people opt for conservative kidney care because of the need to travel to a distant dialysis unit? If there is no local home haemodialysis training team how do people get to hear about and choose this option? Do people really choose to go onto dialysis before they are put onto the transplant waiting list?

The challenge of assessing dignity in care

It should be compulsory for health and care providers to be monitored, assessed and held to account over the level of care and respect given to their patients, according to leading older people’s charity Help the Aged. The Charity is calling for “Standards for Better Health Framework” to be extended to include 9 measures of dignity, identified by older people as essential to delivering decent quality healthcare.

A new Help the Aged report, “On our Own Terms: The challenge of assessing dignity in care”, explains that all too often for older people, use of health and social care services comes hand in hand with a lack of dignity. The research carried out by the Picker Institute on behalf of the Charity, argues that current measures do not give a clear reflection of the overwhelming lack of dignity in care.

To effectively monitor and assess the dignity of older people using health and social services, Help the Aged wants the following 9 criteria including in the “Standards for Better Health Framework”: read on

This timely report as the Care Quality Commission, the new regulator for health and social care in England prepares to assume its responsibilities from April 2009. I think it is also timely for kidney care – a lot of people with kidney disease are elderly. The report singles end of life care out as a particularly challenging domain to measure. It does however identify a number of toolkits and guidelines for healthcare professionals that have been developed and which provide a good basis for the development of dignity indicators in conservative kidney care. Stephanie Gomm (Consultant Palliative Care Physician, Salford Royal) and Ken Farrington (Consultant Renal Physician, Stevenage) who are leading on the production of a conservative kidney care chapter to complement the national End of Life Strategy, will be examining this aspect of the report in detail and I know that they and the group will be open to other suggestions for indicators and would like to know of work that is going on in this area. We do need more research but we also need to have dignity centre stage in our conservative care planning from the beginning.

Four cross-cutting things were identified within the indicators:

Choice
– support to make choices
Personalised
– personalisation and tailoring care
Control
– respect for individual lifestyle
- preferences and involvement in decision making
- staff attitudes
– respect of all attitudes in relation to all aspects of care
- courtesy and sensitivity in all forms of communication
Facilities
- availability of and access to appropriate facilities and equipment
- cleanliness of facilities

Yes we can ... tackle acute kidney injury as well as chronic kidney disease

Acute Kidney Injury (AKI) had been the poor relation in the first 5 years of the Renal NSF. I can't count the times I have said CKD is common, harmful and treatable over the last few years - well AKI which is a sudden acute deterioration in kidney function is also common, harmful and treatable. Globally AKI is lagging behind Chronic Kidney Disease (CKD) in the kidney world priorities list. It has been dogged, not only by a plethora of different terms and lack of an agreed definition but also by the varied settings in which it occurs. Primary care physicians, pharmacists, acute physicians, intensivists, many surgical disciplines and kidney care services all have a part to play in improving the quality of care and outcomes in AKI. The better people with CKD are informed about their condition, the more alert they will be to reducing their AKI risks.

The adoption of a standard definition and staging system based on the concept of injury, recovery and severity of kidney dysfunction is to AKI what the KDOQI classification was for CKD. Last year, the Renal Association and Critical Care Society produced a best practice guideline. That includes suggestions for audit measures including aspects of epidemiology, prevention, timing and prescription for renal replacement therapy.

This year will see the publication of the Scottish enquiry into AKI and the NCEPOD report for England will be launched at the Royal Society of Medicine on 11 June. Looking at hospital episodes statistics information for hospitals with and without kidney units it is clear that AKI is common and carries a very high mortality.

I think the time is therefore right to consider how we can improve the quality of care and outcome for AKI and have asked Paul Stevens (President of the British Renal Society) to chair a meeting of all the interested societies and stakeholders in mid-March and Andrew Lewington (Consultant Renal Physician, St James’ Hospital, Leeds) has helped design the programme. Paul and Andrew were both authors of the Renal Association Clinical Practice Guidelines. I hope that we will reach a consensus on the terminologies to be used, review that data we may already have and what we will need in the future, consider the guidance and educational needs required by the service and our trainees and form a multi-professional joint working group to advise on all aspects of AKI.

Patient maps

Well you have heard of pathways: well now there are maps. Richard Baker (Consultant Renal Physician, St James’ Hospital, Leeds) recently brought them to my attention. The maps and supporting material provide all that is needed for an interactive group session where individuals with a disease and their partners can discuss and learn more about their condition, how risk can be reduced and how they can be partners in their own care and wellbeing.

The map is about 6 feet by 4 feet and can drape over a table. It has scenarios – different places of care, different life events, diet, exercise and drug issues. There are also set of questions and answer cards – like Monopoly or Trivial Pursuit really! It looks really good.

The Canadian Diabetes conversation map tools were launched in Canada in 2005 and over 60% of diabetes educators in Canada have been trained to use these tools in their practice. By the end of 2008, the conversation map tools had launched in 37 countries with more to come in 2009.

The focus to date has been on diabetes care but I am encouraging Healthy Interactions, the team that makes and markets the maps, to develop maps for kidney care. Several teams have already expressed an interest in them and if you want to find out more go to
http://www.healthyinteractions.com/
https://diabetes.healthyi.com/

bedtime reading: NIHR Clinical Doctoral Research Fellowships (NIHR C-DRF) - applications invited

Applications are now invited for NIHR Clinical Doctoral Research Fellowships (NIHR C-DRF).

I wanted to draw your attention to this important initiative and encourage you to support the people in your teams with the potential and energy to take up these posts to do so. It would be beneficial if you could distribute this information to the appropriate members of your team. The NIHR Clinical Doctoral Research Fellowship is aimed at graduate (post-degree) nurses, midwives and allied health professionals sited in England who have at least 1 year's experience of clinical practice since graduating; have had sufficient research experience or research training to prepare then to undertake a PhD; and wish to obtain a PhD by research whilst still developing their clinical skills.

Individuals who can demonstrate a role in, or contribution to, improving health, health care delivery or services are eligible. The fellowships provide funding for salary and research costs appropriate for a research training award.

Please note that the application process, form and guidance notes for the NIHR C-DRF is different from the NIHR DRF (part of the NIHR Fellowship Scheme).The closing date for completed applications is 1:00pm on Wednesday 8th April 2009.