Tuesday, 27 November 2007
bedtime reading: Patient involvement in patient safety - the patient as part of the safety solution: how can patients be involved?
Read it on the website of the National Library for Health
Thursday, 22 November 2007
HBN 53 Vol 2 Main Dialysis Unit.
Tuesday, 20 November 2007
Q: How do you see living donation developing in the UK when funding for blood group incompatible live donor transplants and LDTX for highly sensitised patients, is so restricted? Surely if more patients could be transplanted prior to starting dialysis this would save money?
A: Thank you for raising such an important point. We need a change in culture – we shouldn’t be thinking pre-dialysis care, we should as you imply, redesign our system so that as many people as possible receive a transplant before they need to start dialysis. Yes, it would save money – more importantly it would save lives. For a significant number of people a period of time on dialysis, with all the disruption, anxiety and risk involved, would be avoided.
For the majority of people who receive a live donor kidney transplant the best timing would be some time in the 6 months before they would have needed dialysis. That is one of our National Service Framework markers of good practice. But pre-emptive transplantation, to avoid dialysis, is not yet the norm. Only 3% of people who start replacement therapy in the UK get a pre-emptive transplant! For many there is a long and unacceptable delay in transplant workup and transplant listing. We can and we will do better.
Indeed the live donor programme is going from strength to strength with significant year on year increases such that now, a third of all kidney transplants are from live related or unrelated donors. Each and every one of them is a hero and I take my hat off to them! Many are having a laparoscopic procedure to donate – when that’s possible it’s a much easier operation for the donor who can return to normal activities more quickly than following a traditional kidney removal and the scar is much smaller.
The “Saving Lives, Valuing Donors: A Transplant Framework for England” launched in 2003 has provided some of the much needed investment in transplantation – over £4M in this year for new initiatives to increase donation. As a result live kidney donation and non heart beating donations have increased but heart beating donor rates – the main source of donor organs, have remained steady at best. That is why the Organ Donation Task Force was established to learn from what is happening in the countries with the best donation rates, consider why we aren’t yet in that league and to make recommendations to the Ministers and Secretary of State this autumn on actions that need to be taken to optimise donor rates.
The recent changes to the law, from September 2006, have expanded the options for live donation when there is blood group incompatibility or recipients are highly sensitised. The new kinds of living kidney donation are paired and altruistic donations. Donors are often a close relative but can also be individuals who are not related but have an established emotional relationship with the recipient such as a partner or close friend. Sometimes a donor and a recipient may be incompatible with each other because of blood group or tissue type mismatch and in this case it may be possible for them to be paired with another donor and recipient in the same situation so that each recipient will benefit from a transplant that they would otherwise not have had (paired donation). Where more than 2 pairs are involved in the swap it is called “pooled” donation. Donors may also now offer a kidney to someone who is on the waiting list for a transplant but whom they have never met (non directed altruistic donation). The “paired donation” programme is now up and running – the first transplants have been performed and more are planned. Paired exchange means that whilst the patient receives a kidney from an unknown donor, the transplant is blood group and HLA compatible, the recipient needs no extra treatment, and is also likely to be better in the long term than transplanting across blood group or HLA compatibility.
In some cases however it is possible to “break the rules” of ABO incompatibility or transplant someone who is highly sensitised – the workup and preparation for these live donor transplants is more complex and the risks are higher but several units have established ABO incompatible and immuno-absorbtion programmes that make such transplants a possibility and the results in these centres are excellent. UK Transplant is in the process of establishing a national registry of these transplants so that outcomes and best practice can be shared nationally to the whole kidney community.
Most of the barriers to transplantation are not financial – being listed a year after starting dialysis is a system not a funding failure. However I am pleased that you raised the issue of funding because it has been a delaying factor in some instances and because the Department of Health has just issued guidance on this point.
“Who pays? Establishing the responsible commissioner” (Department of Health, 2007) makes it crystal clear who is responsible for funding, you will be pleased to learn that live donor transplantation is specifically mentioned. The Primary Care Trust of the recipient of the donation should be responsible for funding the procedure and the reimbursement of out of pocket donor expenses such as loss of earnings. Ministers have specifically asked to be advised of NHS bodies that are unable to reach local resolution.
We had our pathway initiation meeting with Pip Robinson’s 18 week team on 15 November. John Scoble (Consultant Renal Physician, Guys Hospital) and Mike Nicholson (Consultant Transplant Surgeon, Leicester General Hospital) are leading on the Live Donor Pathway and Lawrence Goldberg (Clinical Director of Renal Medicine, Brighton) and Kathryn Griffiths (GP with specialist interest in vascular disease, University Health Centre, York) are leading on the Kidney Disease Pathways. The latter are planned to cover all specialist kidney referrals and will be developed in 2 parallel sections - early CKD and advanced CKD. Lisa Hollins (Service Manager, University College London Hospital) will be managing our project and keeping us on track. Lisa has been working on 18 week pathways for some time with Steve Laitner (Consultant in Public Health Medicine and GP, St Albans & Harpenden PCT). They have led on the introduction of the Quality of Life domain into the pathway work.
The timelines are challenging – draft to be ready to share with patients, the professional societies and the colleges by January and a consensus meeting to sign off February with implementation from March 2008!. But it’s not about reinventing the wheel – lots of work on chronic kidney disease has been done over the last 3 or 4 years and this will form the basis of the project.
The power of the pathways isn’t so much that they produce a national template for Trusts and units to adopt although that in itself is helpful, but rather that they provide structured clarity for primary care, clear guidance for exit from secondary care and promote a means by which to judge some aspects of quality. They are commissioning pathways not detailed clinical algorithms. I am delighted that we have Rob Lusardi (Assistant Director, West Midland Specialised Commissioning Team) on the group because of his experience as a commissioner with the West Midlands Renal Network.
For many people with kidney disease the pathway in secondary care will end with an information prescription with what the condition means, what the person with kidney disease can do to avoid the complications of chronic kidney disease and how this long term condition should be managed. A care plan by any other description and a core aim of Standard 1 of the Renal NSF that can be audited.
The real power of the pathways resides in the second phase. Mapping technology enablers, workforce requirements, education and training needs to the pathway; identifying the barriers and tackling them – be that the volume of day case vascular access, timely ultrasound service, electronic handshakes of care planning between primary and secondary or the need for translation services. The pathways are also likely to be linked to the map of medicine and the NHS Choices site but more about those on another day.
We made great progress on this until the fire alarm but we all got out safe and sound so I am expecting great things from Kathryn and Lawrence, Mike and John over the next 2 months.
As ever, I would welcome your comments and a spare pair of hands or brain is always a bonus. Come and get stuck in.
Monday, 19 November 2007
PL CNO (2007)7: National confidential study of deaths following meticillin-resistant staphylococcus aureus (MRSA) infection
PL CNO (2007)7: National confidential study of deaths following meticillin-resistant staphylococcus aureus (MRSA) infection
The information has been posted on the NKF website and can be accessed by this direct link.
Friday, 16 November 2007
I have recently been involved in an initiative, led by Kidney Research UK and the British Renal Society, and supported by The Big Lottery Fund, Baxter Healthcare UK, Wyeth UK, Astellas Pharma Inc and Genzyme UK. to create 2 DVD modules which provide exactly this information and advice.
‘Living with Kidney disease’ is a unique health awareness DVD project that aims to support anyone who has been told by their doctor that they have some level of kidney damage. Participants in the production of the DVD included BRS, Kidney Research UK, the Renal Association, the British Transplantation Society and the National Kidney Federation. Importantly, the content of the DVD has been driven by patients who themselves are suffering from CKD and who can provide a first hand view of their experiences.
The first module in this series is for those individuals who have been newly diagnosed with chronic kidney disease (CKD). This programme, presented by Dr Chris Steele from ITV’s This Morning, outlines what the kidneys do and the background to CKD. Most importantly, it covers what can be done in terms of both diet and lifestyle changes to prevent further damage to the kidneys and to reduce the associated risks of stroke and heart attack.
This module was launched on World Kidney Day earlier this year which, as well as aiming to raise renal care further up the political agenda, also reached out to communities in a bid to highlight the disease to specific high-risk groups including South Asians, Black African Caribbeans, people with diabetes, people with hypertension, obese individuals, smokers, and those with a history of vascular or kidney disease.
The second DVD, presented by Fiona Loud (Chair of the Kidney Alliance and someone with kidney disease) offers further practical advice and is aimed particularly at those individuals with more advanced kidney disease, or those who are just about to start dialysis. This DVD, which was recently launched at the National Kidney Federation Conference, discusses topics such as treatment choice - something which has to fit both the patient’s medical needs and lifestyle, transplantation options and practicalities such as employment and financial issues.
The advent of widespread eGFR reporting means that in the next couple of years large numbers of people will learn for the first time that they have CKD. This DVD will be a valuable resource to help patients (and clinicians advising patients) through this difficult period. The focus of the DVD is the lengthening and improving the quality of life of people with CKD; it covers diet and lifestyle advice, as well as accurate, honest and encouraging information on monitoring disease and health.
These DVDs are unique in that the material contained in them has been written by patients and is presented in a simple and positive way. Additionally, there are options to view the DVDs with subtitles in English and audio in English, Bengali, Gujarati, Urdu and Punjabi.
Have a look here to see what it looks like. Individual copies of the DVDs can be ordered on line at www.kidneyresearchuk.org/dvdproject. For bulk orders contact Kidney Research UK.
This project was supported by Baxter Healthcare UK, Wyeth UK, Astellas Pharma Inc., Genzyme UK and a grant from the Big Lottery Fund.
Those headline results of course hide the local picture. Some units have achieved and maintained dramatic reductions, a few units never had a problem and worryingly, despite ostensibly good efforts, several units show a deteriorating picture. The numbers are so small that statistical comparison is inappropriate but the patients affect and our CEO colleagues will have noticed!!
If you have any difficulty with the MESS system do contact Richard Fluck on Richard.firstname.lastname@example.org or 01332 789344 (direct line) or for more information on the Renal MRSA action plan and how you can apply that locally contact Mercia Spare on Mercia.Spare@dh.gsi.gov.uk or 020 797 7396.
The Health Projection Agency's (HPA) latest MRSA bacteraemia results; reports and individual Trust listings are available here.
Wednesday, 14 November 2007
Any information would be of great use. Thank you very much for your assistance.
Alice Kershberg, 3rd Year Nursing Student, Kings College London
A: Well Alice that is a great question. The topic of the pressures that introducing eGFR reporting have generated within the renal community was discussed in detail at the last Clinical Directors Forum of the Renal Association. A lot of examples of good practice were quoted from across the UK. In brief I think it would be fair to characterise success as joined up pathway working between primary and secondary care, a systematic approach to implementing the UK CKD guidelines along with adopting eGFR reporting and testing new referrals and follow up appointments in renal clinics with the question “is this adding value to patient care?”.
A number of the posters and presentations given at the Clinical Directors Forum on 3 March 2007 are available at http://www.renal.org/ServiceProvision/CDforum2007.html .
However, it would be misleading not to acknowledge that in certain parts of the country pressures have been intense. A survey of clinical directors undertaken by the Renal Association (available here) showed that 2/3 of units felt they had insufficient capacity to cope. Between 40-90% of referrals were being seen and the consultants felt that there had been an increase of about 50% in referrals that were considered appropriate. This was matched by a similar increase in inappropriate referrals. One individual felt there had been 1000 fold increase in inappropriate referrals! Clearly, they were under a lot of pressure that day!!
Finally, we have just received information from the Information Centre on primary care performance in the chronic kidney disease domain of the Quality and Outcomes Framework. It shows an overall prevalence of chronic kidney disease in England of 3% but there is marked variation between Strategic Health Authority and even greater variation at PCT and practice levels. This suggests to me that the system has managed the introduction of eGFR reporting and initial management of CKD in primary care well but there is still quite a bit to do particularly with regard to education and training and the early identification and management of kidney disease in the practices with lower than expected rates of detection. Of course the Quality and Outcomes Framework doesn’t contain information on proteinuria testing and this is likely to be a major driver for both the increased vascular risk and the risk of progressive kidney disease. We know from anecdotal information and some local studies that proteinuria testing has increased. I suspect that proteinuria testing in chronic kidney disease will become standard practice in line with the national guidance over the next few years.
Given the fact that we are only one year into the new world of chronic kidney disease being an issue for both primary and secondary care, I think we have come a long way. The increased awareness of chronic kidney disease will surely improve medicines management in this group of patients. Blood pressure and vascular control measures are likely to reduce vascular events in this high risk group and I like others am hopeful that it will reduce the number of people who “crash land” or present as an acute uraemic emergency previously unknown to kidney services.
Friday, 2 November 2007
Age Affects Outcomes in Chronic Kidney Disease
Ann M O'Hare, Andy I Choi, Daniel Berenthal, Peter Bacchetti, Amit X Garg, James S Kaufman, Louise C Walter, Kala M Mehta, Michael A Steinman, Michael Allon, William M McClellan, C Seth Landefeld
Concludes that age is a major modifier of outcome in people with Stage 3-5 CKD challenging us to move beyond a uniform stage based approach to CKD.
I’m quite new to being a renal patient representative, but have been a ‘service user representative’ in maternity services for some years. Interestingly maternity services don’t have ‘patients’ and I have found it quite difficult to become one myself!
The year before my transplant felt very difficult. Taking a lot of medication; coming to terms with being seriously ill; adjusting my lifestyle to cope; and looking after my children and all their fears for me were just some of the issues. But it was probably no harder for me than for anyone else in the same situation.
And so many questions! What would life be like after a transplant? Was I doing the right thing? What if my donor fell through? Would I need dialysis? How would that be? Again, I’m sure I wasn’t the only one in that situation - but it felt like that. I was wonderfully supported by friends and family and my lovely consultant (who put up with quite a lot from me) but no-one could really understand what it was like.
At the time I was working as a childbirth educator, teaching antenatal classes for the National Childbirth Trust (NCT). These classes were groups of pregnant women meeting up each week to learn about pregnancy, childbirth and living with a new baby, and to understand decisions they might have to make. I offered them different learning activities; games, work in small groups, discussions, practical skills and brainstorming sessions. The classes drew on the participants’ own knowledge, experiences and feelings, and I was there to facilitate that learning process and share what I knew when appropriate. Over the sessions, the groups would bond and become an important support network for each other. Some of the discussions were difficult, like talking about losing a baby, but it was a safe environment for people to talk about their worst fears and also their greatest hopes. The women came out of the classes confident and empowered.
I couldn’t help but draw parallels with my own needs as a ‘kidney patient’. I wanted a place like that, where I could go and have my questions answered by someone who could listen and understand. I wanted to meet other people in the same position as me and find out what they knew and how they coped. I wanted to know what all my options were, and how they related to me personally, not just watch some DVD at home by myself.
This idea of having ‘renal replacement therapy preparation classes’ has been in the back of my mind ever since. As luck would have it, I met Donal recently. We fell into discussing the education of pre-dialysis patients and I was able to suggest this to him. I’m now looking at implementing this at my local hospital. If it works out, maybe Donal will let me borrow his blog again, and I can let you know!
End-Stage Renal Disease in the United States: An Update from the United States Renal Data System
Robert N Foley and Allan J Collins
Shows modest in survival but startling increases in cost. Reflecting the growth in the size of the ESRD population associated costs grew by 57% between 1999 and 2004 and now account for 6.7% of the total Medicare expenditures.
Thursday, 1 November 2007
Sevelamer: a promising but unproven drug
Suetonia C Palmer, Jonathan C Craig, Giovanni F M Strippoli
The accompanying articles from Tonelli's group in Alberta in the same issue are reviewed with the other recent papers on CKD - BMD to provide a balanced view of where we are now and that hope that further studies like EVOLVE will answer some of the important questions in bone mineral disorders.
1. The NSF clearly states that patients should be educated and given choice - so how is the NSF monitored to ensure that this happens?
2. Can commissioners ask why treatment choices and costs are different compared to the national average?
3. Have there been any outcomes from the Dept of Health workshops earlier this year on patient satisfaction and home therapies?
A: Thank you for raising this issue. The quality of patient choice is highlighted in the NSF and I think, as you imply, there are things that we can do now but, as is often the case in renal medicine, we are somewhat hampered by lack of evidence and in particular a robust tool to assess the quality of choice we offer our patients.
Turning to what can be expected at present:
- Commissioners. The commissioners have a role in ensuring that their clients, our patients, are offered choice. Where units are outlyers it is incumbent on the commissioners to examine why that is and they should be asking units to explain the patterns of care. In particular, as you know, all Trusts are expected to be able to demonstrate that they have offered home haemodialysis.
- Patient representatives and individual patients have a role. In many networks patients are represented at all levels. I think the general feeling is, and several people have expressed to me, that when patients are “in the room” behaviour and actions more closely match patients’ aspirations than when planning and implementation is the exclusive preserve of the healthcare professionals. Some units, such as Guys & St Thomas' have befriender schemes where “accredited” patients provide support and act as a resource for people approaching or at end stage renal failure.
- Provider teams - clinicians and managers. Several units have a systematic approach to examining their pattern of care and “place in the league tables” with regard to the Registry outputs. I presume groups like that Pan Thames Audit Group also provide a similar forum for reflection and questioning practice.
The reports of the Department of Health Renal Advisory Group workshops on home dialysis therapies and patient experience and choice will be published in November. The latter workshop developed a checklist for people on dialysis is primarily aimed at people on haemodialysis, but is has been piloted and hopefully will be ready for general release shortly. We have made some progress with the DH actions from the choosing home renal therapies workshop. In particular, the importance of choice and its implications in planning were discussed in some detail at the first meeting of the 10 Specialised Commissioning Groups we held in September. Ensuring that pre-dialysis care is developed and that choice is integral to service delivery has been flagged as part of the Payment by Results (PbR) Project which is about to begin. This will provide an opportunity to examine costs in units with different proportions of patients on haemodialysis and peritoneal dialysis. I will also be arguing strongly that patient choice and experience metrics should be considered as part of the 18 week pathway project. The latter will cover the whole of chronic kidney disease, one difficult question is how to manage stopping and starting the clock; this will be one of the first 18 week pathways that doesn’t have a “surgical outcome”. The 18 week team seemed to support the idea that the output is a care plan that the patient has – within that I would expect to see evidence of discussion of the various modalities.
Of course each dialysis modality is clinically satisfactory for the majority of patients. The issue really is one of choice. As regards specific NSF monitoring of choice, we do not have such a mechanism in place other than for home haemodialysis where units should be able to provide evidence that they have offered this modality to suitable patients. We do of course have comparative data between units submitted and published by the Renal Registry.
One very interesting idea that Miranda Dodwell, who I met at the Renal Advisory Group on Primary Secondary Care Informatics and who has a keen interest in patient education, has suggested is renal replacement therapy preparation classes. Miranda will be my first guest blogger soon outlining the potential parallels with birth and parenthood preparation classes run successfully within the NHS by midwives, by charities such as the National Childbirth Trust and by NCT teachers contracted to the NHS, which occurs in some Trusts, for example, at the Birmingham Women’s Hospital. Dr Sandip Mitra (Consultant Renal Physician, Central Manchester & Manchester Children’s NHS Trust) runs a very innovative workshop style programme with the multi-disciplinary team, with mannequins and machines for patients together with their carers to get a much better understanding of the options available.
I appreciate that my comments do not provide a solution to this wicked problem but hopefully they provide some opportunity to examine the issue from a number of perspectives. Read an interesting article on wicked problems here.
I would appreciate any comments you may have. I would also appreciate guidance on any work that may be in progress to provide tools to assess quality of choice and I am happy to continue dialogue on this topic.
Clinical research of kidney diseases II: problems of study design
Pietro Ravani, Patrick S Parfrey, Elizabeth Dicks and Brendan J Barrett
Thoughtful review article on the types of study design to answer particular questions. A helpful description of the pitfalls and ways to avoid them for kidney researchers.