Monday, 14 December 2009
As some background, my sister has PKD and I am prospective donor for her. We are now at the stage where we are waiting for her to be sick enough for the transplant to take place and I am cleared for surgery. Unfortunately my questions\thoughts are not with the medical side, which by standards is mostly logic.
I work for a large multinational company and approached the HR team to explain that I was donating my kidney and asking for clarification of cover for a) testing days as normal treatment type leave and b) post operation as normal sick leave. Their response was “no” until after further discussion (where I pointed out cover is allowed for blood donors, normal accidents, pregnancies etc) HR finally agreed that absences related to the kidney donation would be covered as normal sick leave.
What would help donors is if it was made law for firms to effectively treat the above as a normal condition - much as normal sick leave (under reasonable circumstances). As Renal Tsar, would you be in a position to carry this thought forward at a national level?
My sister and I are currently chasing around our various health insurers to see how we are covered. I suspect that the answer initially will be no – since I am not technically sick (in fact the opposite) but hope to point out the error of their policies and get it changed, otherwise she could be in one hospital, whilst I am operated on in another and the kidney transported between them.
Any thoughts on the above would be great, Thanks in advance
A: Thank you for your email about your discussions with your company to support your living donation of a kidney to your sister. I am delighted that they have agreed to continue to pay your salary.
From the description in your letter, it appears that you are employed by a large company that no doubt runs a "contractual" sick leave scheme (ie that you receive so many days, weeks or months at full pay, half pay etc as long as medical certificates are provided).
I understand that under employment law, there is no obligation for firms to pay contractual sick pay (probably many very small firms cannot afford to do so). However, employers do have a duty to pay statutory sick pay (SSP) for the first 28 weeks if an employee is absent due to sickness in any period of 3 years.
Therefore, I suspect that it would be difficult to make legislation forcing employers to pay employees for the period of absence due to live organ donation as they are not obliged to pay anything other than SSP for any type of sickness absence. One avenue to explore might be with Department of Work and Pensions (DWP) on the criteria for SSP, to clarify that someone in your circumstances (who would presumably get medical certificates) would qualify for SSP and to ensure that this is communicated to employers. A change in legislation might not therefore be necessary.
We are also working with Trade Unions to discuss generally how they could work with us to raise the profile of organ donation with their members. This seems an issue that they could raise to encourage organisations to agree to meet salary costs when absent from work as a live donor.
My best wishes to you and your sister for a successful transplant
Achieving excellence in kidney care: delivering the National Service Framework for Renal Services positions kidney care in the new environment laid out in NHS 2010-2015 from good to great. Preventative, people centred, productive. It cites examples of innovative ideas and excellent practice in various places across the country in most aspects of kidney care. It also highlights the variation in practice that identifies crucially important elements of care where local service improvements can drive better quality and experience for our patients. Change happens locally. Fundamental service improvements are led by local teams working in an empowering environment. They need to be given the responsibility to achieve, permission to take risks, as part of a learning organisation. National policies and guidelines set the framework, but it is through the grass roots understanding of quality and productivity that development of innovative approaches, which lead to lasting improvements, happen. At the centre of this are patients and the high quality relationships built between them and empathetic motivated and skilled practitioners.
We need to accelerate implementation of what we know works such as earlier and better blood pressure control, implementation of the NICE Guidance on chronic kidney disease and anaemia management, and timely preparation for replacement therapy or conservative care. We need to be bold, to innovate and challenge the norm so that we can achieve improvements. This requires co-ordination, partnership and leadership by commissioners and providers, and by clinical, social care professionals and managers in and between primary and specialist care.
We know there is still considerable variation in access to care, there are missed opportunities for prevention, unnecessary delays in treatment and often a failure to provide the conditions for shared decision making. The National Kidney Care Audit on patient transport for haemodialysis, the National Confidential Enquiry into Patient Outcome and Death report on Acute Kidney Injury and the difficulties people on haemodialysis experience in dialysing away from their base unit are 3 areas where we must make real improvement at scale and pace.
The National Renal Dataset is a big step in the right direction and the development of quality metrics will enable best practice to be incentivsed. Improved coding, measurement, analysis and reporting of patient experiences, clinical effectiveness, costs, safety and outcomes are also necessary to achieve the prize - moving our services from being good in parts to being great everywhere. This will not be easy. Enjoy the break over the festive season. I would like to thank the kidney community for their enthusiasm, passion and dedication to improving care across the entire kidney care pathway. I look forward to working with you in 2010 which is shaping up to be a key year for kidney care.
Renal patient transport - related blogs:
Use iView to get the most out of the Patient Transport results
FOR ACTION: Patient Transport survey results launched
Patient Transport Survey 2008, first phase launch
Two in three patients take part in patient transport survey
National Renal Dataset - related blogs:
Contact details for questions about the National Renal Dataset
Q & A: national renal dataset
Thursday, 10 December 2009
There is an emphasis on care closer to home and "the tariffs payment system must incentivise the shift for care out of hospital settings if this is what patients want". Home dialysis is cited as a good example where quality and efficiency come together. From good to great identifies the need to link payment systems to whole pathways of care so that long term conditions like kidney disease can be managed across the whole local health environment.
Wednesday, 9 December 2009
Clostridium difficile infection rates are also collected by the HPA. Again the rates have been falling over the last few years. For kidney services during the 3 month period July to September 2008 there were 107 episodes representing 2.7% of the total or an incidence of 8.2 Clostridium difficile infections per 10,000 bed days. This remained essentially unchanged at 105 episodes representing 4% of the total Cdiff infections FOR the corresponding period in 2009. This is the second highest rate for all specialties with critical care medicine where there is an incidence rate of 10.6 episodes per 10,000 bed days being the highest rates . For comparison general medicine and general surgery have rates of 4.5 per 10,000 bed days and 3.3 per 10,000 bed days respectively.
Full details are availabe by following this link which also gives dates of future publications of the monthly MRSA and Cdiff tables and the dates for quarterly analysis release.
Thursday, 3 December 2009
Steve Smith, Clinical Lead for the West Midlands Renal Network, has been an advocate of peer review for many years so it was no surprise when I visited the Network recently that peer review was on the agenda; and what a good job Steve and his multiprofessional renal team colleagues, patients and the West Midlands quality review service have done! This has been as much about patient experience as policies and protocols.
The purpose of the peer review programme is to help providers and commissioners of services for people with end stage renal failure to improve the quality of services by:
- Ensuring evidence based quality requirements are developed and kept up to date
- Undertaking peer review visits to ensure compliance with quality requirements for services with
- people with end stage renal failure, including renal transplantation
- Providing development and learning for all involved in the peer review programme, especially those who act as reviewers
- Providing comparative information on compliance with ESRF quality requirements and identifying common themes across the West Midlands
- Monitoring action taken by providers and commissioners to address issues identified by quality assurance visits and if necessary ensuring appropriate action is taken.
As far as possible the peer review visits took a patient pathway approach including for example links between the renal units and the acute hospitals within which they are located. The review teams consisted of service users and carers, nursing, medical, technical, dietetic, specialist commissioners and public health. Individuals were chosen for their good communication and interpersonal skills including ability to listen but also to probe and search for evidence on which to base conclusions.
The cycle of visits in the West Midlands has now finished and the Network team are pulling the individual unit and regional reports together. I will be interested to read them and see what conclusions are drawn. I bet Richard Fluck, Clinical Lead for the East Midlands Renal Network will also look at take what’s best from it for their development of a patient inspectorate for the Network. In the meantime, the "Standards for Services for Patients with End Stage Renal Failure, Including Renal Transplantation" documentation which the peer review teams used makes interesting reading and provides a template that can be applied locally or Network-wide elsewhere in the country.
Wednesday, 25 November 2009
Over several years there have been initiatives to develop a more extensive service on site, to support our tertiary services as well as the local ESRF population but each one has foundered through a combination of inertia, funding and local politics.
Until recently there seemed to be some light in the tunnel of joint working but once again we seem to going back to square one in justifying a service based on site here - rather than one provided here by visiting clinicians from the renal unit based elsewhere, without an inpatient presence.
I would be very grateful if you could give me a steer on the national situation - I've have looked at various documents (and have even tried to play with MORRIS) but I can't find any hard information. Senior management have referred to a national strategy, from which they have the idea that there will be 30 new units some time soon? Is there any initiative at SHA level which supports local provision?
A: Many thanks for your email of 16 November about developing kidney services. It’s a timely letter as NHS Kidney Care have just produced a guide to “Achieving Autonomy for Kidney Services”. It’s a 7-step toolkit and was featured in the HSJ a few weeks ago.
You will be well aware of the history of renal medicine in the UK – from a slow start, interrupted by the Hepatitis B outbreaks, to the majority of teaching hospitals and then, in the 1980s, services becoming established in some of the bigger district hospitals. There has been little growth in the number of units over the last 15 years. The focus has been largely on satellite dialysis provision. It’s a highly unusual model of care, I think it is salutary to consider that in England with 50 million people we have 52 units and in the other home countries there are 26 units serving a population of 10 million. Nor is there a geographic explanation for the highly concentrated nature of kidney services in England. Now that kidney services have expanded to interact more closely with primary care in the management of early kidney disease which is recognised to affect in the region of 10% of the adult population, and with the focus on conservative care for those who elect not to have dialysis where getting local care in the community is often the preferred option, it’s perhaps timely to ask the question do we need bigger central kidney units or a more dispersed model of care providing more local support to both primary, secondary and tertiary care. The recent publication of the NCEPOD report on acute kidney injury also highlights the uneven spread of kidney services and recommends the development of on site renal services to support colleagues in acute medicine, critical care and other specialties looking after the acutely unwell where AKI is a frequent occurrence and of course to provide replacement therapy in the minority of AKI patients who need dialysis.
Conversely I am sure that one size does not fit all and planning does need to be done at a local level. I don’t see renal centres developing in every acute hospital. I have speculated that perhaps we should be moving towards 85 centre in England. I suspect I was quoted saying that in the HSJ and that’s maybe where your senior team got the number of an additional 30. However, there are a number of organisational, commissioning and professional challenges in developing new services as we know from the recent experience of places like Doncaster, North Hampton, Aintree and Worcester. “Achieving Autonomy for Kidney Services” draws on this experience to identify the various steps, tasks required and partnerships to be put in place and as well risks that must be managed. Of course now the focus is definitely on quality and productivity, but the need for kidney services in only going to grow and it may be that more units rather than just bigger units are both better value for money and the cheaper option.
I hope you find the 7-steps toolkit of interest. I am of course happy to discuss in more detail at a mutually convenient time. With best wishes, Donal.
Establishing new kidney units
Monday, 23 November 2009
The National Institute for Health and Clinical Excellence has also just announced a scoping exercise for the development of a short clinical guideline on PD. Details can be found on the NICE website. This short guideline will complement and build upon the soon to be published RA best practice guideline and provide a sound basis for offering this modality as one of the options for people approaching the need for renal replacement therapy. One question I would like to hear the answer to is how we can support shared decision making for people who arrive requiring dialysis when preparation and planning haven’t been possible. Increasingly such individuals are being offered PD but accelerated processes for patient education and fast tracking of, for instance, transplant listing remain a challenge on busy renal wards.
As the demand for kidney services grows one of the questions to be asked is should kidney units just get bigger or would there be advantages in establishing new units? The reasons for the English model can be debated but NHS Kidney Care have done better than that and have produced a 7-step tool kit for achieving autonomy for kidney services. The service configuration in England has evolved from a traditional hub and satellite approach to a formal network of kidney care where partnerships and synergies are developing. In the future we must deliver more services locally. In some, but not all instances, this care will be delivered to a higher quality and offer better value for money from a new kidney service that is fully integrated into the local health economy.
We have the trainees to create new units. The NCEPOD report on acute kidney injury highlights the uneven spread of kidney services and recommends development of on site renal services, we need to work closely with primary care in the management of early kidney disease and to deliver better quality conservative kidney care close to peoples’ homes. So it’s not just dialysis growth driving this evolution.
A fully stand-alone kidney unit might need 4-6 consultants depending on whether they are full time or part time and also the extent of the kidney team’s involvement in acute medicine, research and training. That would be difficult if all those set up costs were needed from day one. They are not. New centres can be established incrementally. Separation from the parent unit indicates that autonomy has been achieved but that’s not the first step nor is it the driver for new units. The driver must be better quality of care for people with acute kidney injury and chronic kidney disease.
Thursday, 19 November 2009
I am just back from the EDTNA meeting in Reading, and what a fantastic programme Rebecca Kinton and her team put together. I was invited to speak on the topic of “Quality: your role” and was sandwiched between 2 engaging and provocative talks. Jane Macdonald, President of the BRS and one of my nursing colleagues at Salford Royal spoke on small tests of change and local quality improvement. I had seen some of the data before but it never fails to impress. The quality improvement approach has resulted in an increase in haemodialysis via fistula from about 65-70% to consistently over 85%. Cardiac arrest on our kidney wards have been reduced by over 75%. Vascular access complications requiring admission to hospital are down by over 50%. Bev Matthews another close colleague and Director of NHS Kidney Care, with whom I work closely on national and strategic matters spoke on the programme of establishing kidney care networks across the country and on the whole range of quality improvements NHS Kidney Care has supported from early management, through preparation and choice to home therapies, transplantation and conservative kidney care. There is now a wealth of material that can help drive quality – you can access it at Kidney Care Matters online. Bev and Jane also spoke about costs, the work that has been done to improve national dialysis and transplant costings and the “savings” that local quality improvements can achieve. In Jane’s examples there was a considerable reduction in costs associated with bank and agency staff use.
Now, the kidney care networks provide a system for local quality improvement initiatives to flourish so my task speaking on “quality: your role” was no easy one between these two talks. One of the things that I tried to address was “does improving quality save money?”. The Department of Health is dedicated to a quality and productivity approach to the impending crunch for the NHS. I have to declare that I am a believer that quality can reduce cost but the honest answer to the can quality save money question, after reviewing the evidence is that that we don’t know. To an extent we are entering uncharted waters. There is a great potential for savings, but it depends what we mean by quality improvement, who makes the savings and when. Poor quality is common and costly. It has been estimated that the cost to the NHS of hospital acquired infections is £1 billion a year, renal services make up about 10% of that, and adverse drug events are estimated to be between £0.5 billion and £2 billion. But quality improvement itself can be costly, especially in services with little experience or infrastructure to support improvement. I have been reading John Ovretveit’s review, “Does improving quality save money? A review of evidence of which improvements to quality reduce costs to the health service providers” produced for the Health Foundation in September 2009. The report identifies gaps in our understanding of how to achieve substantive and sustainable change and lays down challenges to managers, clinicians, policy makers and academics.
One of the big difficulties is that many of the studies which report “savings” did not assess the cost of the intervention, left out some costs or didn’t use actual cost data from the service. Crucially, savings depend on the financial system and who bears the costs that are distributed between different stakeholders. Providers such as Acute Trusts often do not save because our financial system does not yet measure or reward higher quality care to the extent that it should. Often, an Acute Trust bears the intervention costs of a solution or cannot get the investment financed, and is financially rewarded for poor quality, giving a triple financial disincentive to improve. Patients with chronic diseases do not always receive optimal care and the costs of avoidable emergency admissions is high. Take the example of vascular access, currently we don’t yet have a system to incentivise creation of vascular access prior to the need for dialysis and if people on haemodialysis via a line get a HCAI such as an MRSA endocarditis admission to hospital for treatment of the complications isn’t penalised, it’s paid for. So for kidney services a big challenge is to commission across pathways of care so that timeliness, a key dimension of quality is encouraged and rewarded. Timeliness in preparation for renal replacement therapy, encouragement of pre-emptive live donor transplantation, encouragement and inducements to primary care to reduce late presentation and “crash landing” and recognising the multi-professional support, clinical and social care resources needed for shared decision making in choosing the modality of replacement therapy and particularly in choosing conservative kidney care .
To an extent, savings also depend on which timescale is used: interventions usually incur initial high costs and some, such as preventative care, may only return savings many years later. The clinical community must work on quality but we must also work with our managers, commissioners and policy makers to avoid a knee jerk move to the metaphorical slash and burn activities that we have seen so often in the past which can be so damaging. Policy is changing, NHS Trusts now have quality accounts – do you know if the institution within which you work or are cared for has quality kidney markers in that account?
Commissioning for quality and innovation, the so called CQUIN scheme that provides 0.5% of Trust income specifically for “stretch” quality goals that was introduced last year is proving a success and is likely to be extended. Bev Matthews and I with others in the kidney community are working with the payment by results team to develop best practice tariffs that will provide a financial as well as clinical incentive for haemodialysis via a fistula to avoid lines. We also hope to use PBR best practice tariffs to encourage more support for the uptake of home dialysis – both peritoneal and home haemodialysis.
Ovretveit concludes that we should be both more sceptical and more adventurous – sceptical of both statement of savings which do not give details of which intervention costs were considered and in which situations, and more sceptical about the time, effort and support needed to implement a quality solution effectively and to sustain it. But we should be also be more adventurous in adapting and testing interventions which show promise of effectiveness and savings, from research or from experiences of others, more willing to measure quality and to change our financial system within the NHS to pay for value not volume.
There is enough evidence to show which changes to focus on, in the kidney world these are identified in our National Service Framework. The future is already here but it is unevenly distributed. Some units have made great progress in achieving the vision of the NSF, some general practices are providing a fantastic service for early and moderate chronic kidney disease and have systems in place to work closely with renal specialists in the local community delivery of conservative and end of life care. We do need more research on how to make changes and the support that’s needed to provide consistency. The NHS Kidney Care projects are filling part of that gap. What we can’t do is stand still. The cost of inaction and of not using the knowledge we have is likely to be high, both financially and with regard to human suffering. Quality is the organising principle of the NSF and kidney services must keep quality as our watch word.
Sequins and Quips
Tuesday, 17 November 2009
Kidney disease figures prominently in many sections of the report and the recommendations are highly relevant to the care of those with chronic kidney disease or recovering from acute kidney injury. I was struck on reading the guidelines of the parallels between depression in people with advanced kidney disease and acute kidney injury in acutely unwell patients. Both are common but often unrecognised, basic assessment of depression should be a core competency but often isn’t given prominence and when identified both are frequently mismanaged. The key message is to be alert to the possibility and questions to consider are:
“during the last month have you often been bothered by ‘feeling down’, depressed or hopeless?”
“during the last month have you been bothered by having little interest or pleasure in doing things?”
Depression in chronic physical conditions, including CKD is treatable. It is a major cause of avoidable morbidity, it prolongs length of stay and is independently associated with an increased risk of death. Read the full document (400 pages), quick reference guide or the excellent article in the BMJ (published on 27 Oct 09) by Stephen Pilling and colleagues on behalf of the guideline development group (Pilling et al. BMJ.2009; 339: b4108).
NICE have also produced guidance to promote mental wellbeing through productive and healthy working conditions that aims to help reduce the estimated 13.7 million working days lost each year due to work-related mental health conditions including stress, depression and anxiety. Sick leave in the NHS costs over £500,000,000 a year – staggering I know. David Nicholson, CEO of the NHS has highlighted this guidance to all his NHS Chief Executive colleagues because of its importance
Thursday, 22 October 2009
The model is populated with data at the Local Authority level for the whole of England and users can select their own SHA to run the programme. Results can be produced by Local Authority, Renal Centre and Primary Care Trust. Current levels of renal replacement therapy have been input from the Renal Registry returns and default values for acceptance rates, transplantation and mortality have been derived from recent national data but can be adjusted by the user to more accurately represent local conditions, local projections and test alternative scenarios.
The model has now been through a few iterations and I am most grateful to the advice and support of Paul Roderick, David Ansell, Ruth Davies, Lawrence Goldberg, John Bradley, Kevin Harris and Paul Stevens during this phase.
Wednesday, 21 October 2009
NHS Kidney Care took the opportunity of the conference to launch the peritoneal dialysis specification which is based on a patient centred pathway following the patient from renal failure to dialysis and covering 5 sections each with measurable quality outcomes that commissioners, providers and patients can use to benchmark and drive forward service improvements. I am grateful to Dr Lindsey Barker (Consultant Physician and Clinical Director Medicine, Royal Berkshire), Mario Varela (Director of Procurement & eCommerce, Barts) and the other clinicians, patients, commissioners and managers who helped draw up the national specification.
The specification should be used by patients and commissioners as a guide to services they should be able to access; by providers to offer patients genuine modality choice; by procurement departments to gain high quality, cost effective services and supplies. I am hopeful that it will help in the effort to increase real choice, including assisted peritoneal dialysis for people to have home therapies when they want.
Tuesday, 20 October 2009
“People at risk of, or suffering from Acute Renal Failure are identified promptly, with hospital services delivering high quality, clinically appropriate care in partnership with specialist renal teams”.
An AKI care initiative conference was held at the Royal College of Physicians in March 2009 supported by NHS Kidney Care and a report of those proceedings has now been published with hard copies available from email@example.com
Representatives from different specialist communities from around the UK were invited to share their own perspectives of AKI and how it impacts on patients managed in their speciality. The aims of the conference were for the delegates to work collaboratively in considering the following areas:
1. How to work towards a consensus definition of AKI.
2. How to prevent and detect AKI.
3. How to improve medical training curriculae for both undergraduate and postgraduate trainees and enable best practice management of AKI.
4. How to share datasets and codes to allow identification of quality markers to drive improvements and inform tariff development.
The conference recommended that:
1. A national group is convened to work collaboratively enabling real improvement in the prevention, detection and treatment of AKI throughout the UK.
2. An acceptable working definition of AKI is developed by performing a multi-centre study using different staging systems and correlating with outcomes.
3. Enzymatic serum creatinine assays should be implemented in all biochemistry labs throughout the UK to ensure national comparability. For patients is admitted to different hospitals with different biochemisty laboratories the development of shared databases should be created to improve comparability between laboratories
4. An electronic alert by biochemistry system should be developed which is compliant with the AKA Map of Medicine.
5. The national vascular database should be reviewed and updated to ensure AKA data is collected and audited post-surgery. The instances and outcome of AKI in patients undergoing vascular surgery/interventional procedures should be captured routinely.
6. Further local AKI audits should be encouraged to assess the incidence of AKI among other speciality patient groups.
7. There must be a coordinated approach to improve both undergraduate and postgraduate education for AKI. Core competencies must be developed to improve the identification and management of patients at risk of developing AKI , including the acutely ill patient (NICE Clinical Guideline 50).
8. District General Hospitals without renal services should develop links with local renal services and develop agreed care pathways for patients who develop AKI, enabling optimisation of patient care and efficient transfer of patients to a renal unit if appropriate.
9. Identification of new and improved biomarkers allowing early detection of AKI should be developed to improve the potential for targeted therapeutic intervention.
10. Renal units should work together locally with radiology and cardiology departments to ensure shared guidelines are in place to prevent contrast induced nephropathy.
Subsequently the National Confidential Enquiry into Patients Outcomes and Death (NCEPOD) AKI study was published and shows that only 50% of patients who died of AKI received satisfactory or good care. Delays were identified in the recognition of AKI particularly those who develop AKI after admission. The report has raised the importance of AKI throughout the NHS and will act as a catalyst to drive improvement in renal care.
Some of the individuals and organisations at the March Acute Kidney Injury Care Initiative Conference came back together a few days ago to help the Department of Health and NHS Kidney Care address the following questions:
1. How can you ensure that guidance/evidence relevant to AKI is implemented?
2. What do commissioners/Trusts need in order to ensure appropriate management of AKI?
3. How do you join up all relevant specialities to ensure AKI patients are treated effectively?
4. How do you ensure to and maintain awareness and capability for managing AKI.
AKI is a major issue for a range of communities in clinical medicine and has a significant impact on patient morbidity and mortality and on NHS resources. I am pleased that it is now being regarded as a systemic issue by those responsible for training, service delivery and quality. AKI is common, harmful and treatable. AKI affects up to 1 in 5 people admitted to hospital, and even modest changes in serum creatinine are associated with a 6.5 times increase in mortality.
All acute services have received a copy of the NCEPOD report and have been asked to review their approach to acutely unwell patients in the light of the findings. AKI is now be firmly on the agenda . I look forward to improvements in education, systems and care processes to support the prevention, early identification and treatment of AKI across the NHS, whatever the clinical or organisational setting.
Full text from the Health Policy Digest Research Findings summaries issue 29
Thursday, 15 October 2009
'The information technology (IM&T) team at Sutton and Merton PCT picked up an issue from reviewing CHART & PRIMIS data and discussed this with Lisa Eve, Clinical Services Director and audit lead at Cricket Green Medical Practice. As a result, Lisa conducted an audit, looking at patient records and found that there was a simple READ coding issue. The results from this audit were highlighted as an education and development need within the practice and at their education meeting Lisa ensured all relevant staff within the practice were trained in using the correct READ coding for the condition. As a result all patients who have chronic kidney disease (CKD) now have this long term condition correctly READ coded on the front page of their electronic records. This audit enabled tidying up of patient electronic records by providing an easy to glance record of patient’s current and past problems. The audit also enabled the CKD clinical lead to implement improved clinical care in the form of identifying patients who have not, as yet undertaken annual urine tests for microalbuminuria.
As Lisa says: “this audit enabled us to focus on CKD, improve identification and correct READ coding of CKD and review the need for recruiting specific members of practice staff in order to
deliver targeted clinical care which has the potential to improve patient disease outcomes”.
The audits undertaken were written up, sent to the IM&T team lead at the PCT to enable the review of practice changes and sharing of audit knowledge with other practices.'
One of the things emerging from the Greater Manchester Collaboration for Leadership in Applied Health Research and Care (CLAHRC) CKD project I am involved in locally is the key role that practice managers play in setting up and monitoring the systems that enable the clinicians to improve the quality of care. Practice Managers make a really significant contribution to the health and wellbeing of the nation.
Monday, 5 October 2009
A: Dear Linda, The Green Book is currently being revised and will soon contain further information regarding people who have CKD and the pneumococcal vaccine. We will outline that patients with Chronic Kidney Disease stages 3 to 5 should be offered two doses of PCV (pneumoccocal conjugate vaccine) vaccination followed by a booster dose of PCV (pneumoccocal conjugate vaccine) every five years. Patients suffering from CKD stages 3 to 5 should no longer receive PPV (pneumococcal polysaccharide vaccine).
Wednesday, 30 September 2009
Tuesday, 29 September 2009
Monday, 28 September 2009
A: Dear Simon, I think that it’s important that patient and their advocates continue to articulate the needs of service users. I am firmly of the opinion that high quality is value for money and what’s more usually costs less than if services are chaotic and inefficient. Doing the right thing at the right time, every time drives up quality, drives up safety, drives down complications and drives down costs.
Having said that, there are clear logistical issues with regard to extending hours and frequency for hospital based haemodialysis. What isn’t in doubt is that home based haemodialysis can be precisely tailored to the needs of the individual and definitely costs considerably less than hospital based haemodialysis. There are barriers to home haemodialysis – funds in the “wrong” budgets, cultural barriers, difficulties in supporting people who have become institutionalised to regain their confidence and manage their own conditions. Several units have overcome these barriers and home dialysis is growing in Manchester, in Derby and at Guys Hospital. I think efforts to question why units are not at 5, 10, 12 or 15% home haemodialysis should be a standing item on Network and renal unit/KPA agendas. In South Island New Zealand all patients are on home dialysis (some peritoneal dialysis of course).
If we can optimize modality of dialysis for the population by offering more choice, I am sure that would increase the numbers of people on both home haemodialysis and peritoneal dialysis – that in turn would free up capacity within hospital and satellite units They could then run with some leeway to offer dialysis away from base, more flexibility in changing slots or providing longer hours and for those that would benefit (eg those that find the long break really difficult because of fluid issues), 4 or even 5 times dialysis a week, could be accommodated.
The fiscal situation means that the “do nothing” option is untenable, the “lets cut back a little” option is also untenable so we have to transform NHS services and use the £100 billion plus to deliver real quality. Home dialysis offers quality for those who choose this option and costs less than hospital based therapy. Improving quality at the same time as reducing cost is possible .
I firmly believe we can do that but don’t minimise the challenges and difficulties that we will have along the way. Individuals like you, who sit on network groups, play a vital role in ensuring that those who are less advantaged continue to receive increasingly high quality of care
Wednesday, 23 September 2009
Monday, 21 September 2009
Wednesday, 16 September 2009
Tuesday, 15 September 2009
We think that our patients would not feel the need or like this as the social aspect of mixing with others, especially for younger patients is important to them. We understand that the idea in principle may be better for sick, underdressed inpatinets and would welcome your thoughts on its application to fairly well, fully clothed outpatients. Thank you. Kind regards, Nicky Moncrieff (Renal Nurse Specialist, Addenbrookes Hospital, Cambridge).
A: Dear Nicky, thank you for your question, it is something that is being raised by several renal units. The existing guidance on the Department of Health website actually uses dialysis as an example where common sense needs to prevail. To quote directly "Staff in these areas will need to make decisions on a day-to-day basis. For instance, in a renal dialysis unit, if all patients are well-established on treatment, wear their own clothes and have formed personal friendships, mixing may be a good thing. By contrast, a new dialysis patient, with a femoral catheter, and wearing a hospital gown, should be able to expect a much higher degree of privacy." I do hope this is helpful. Kind regards Donal.
Monday, 14 September 2009
Thursday, 10 September 2009
A: Congratulations Frank, on your upcoming 87th birthday and the 15th year anniversary of your kidney transplant. Your experience of receiving a transplant in your early 70s and continuing to live a long and productive life will be a great inspiration to others with kidney disease. Thanks for your question about eGFR and what it means. eGFR stands for estimated Glomerular Filtration Rate. Glomerular Filtration Rate is now widely recognised as the best measure of kidney function. It can be estimated from the level of creatinine in the blood and since a normal GFR in a young adult is about a hundred mils per minute, the eGFR can be thought of as percentage kidney function. Talking about eGFR as percentage kidney function has been a useful way to demystify kidney disease for doctors, nurses and patients. However, eGFR isn’t a perfect measure of kidney function, it has several limitations and a single figure will never tell you everything you need to know about an individual’s kidney or transplant function.
Each kidney is made up of about 1 million nephrons. The nephrons do the work of the kidney – getting rid of waste products, controlling and adjusting the blood chemistry and producing the metabolic messengers vitamin D and erythropoietin that keep our bones and blood healthy. Nephrons do this by filtering the blood through tiny specialised blood vessels called glomeruli and then fine tuning what the body needs to retain or be eliminated along the tubules which make up the rest of the nephron. Filtration of blood across these filters is therefore the first and most important stage of cleansing the blood of impurities. This is called Glomerular Filtration Rate or GFR. The GFR can be directly measured by using radioactive isotopes or by infusing certain inert chemicals into the bloodstream. This is sometimes done to very precisely measure kidney function in people offering kidneys for live donation. Such tests are not practical in routine clinical practice for day to day assessment of kidney function. Fortunately, GFR can be estimated from serum creatinine which is easily measured. Creatinine has been used to give an idea of kidney function for many years. Creatinine, used alone, is an insensitive marker of kidney function, up to 50% of kidney function can be lost before the serum creatinine concentration rises above the normal range. Estimated GFR is a better measure of kidney function that serum creatinine. Since 2006, every laboratory in the UK has calculated a standardised eGFR using a formula based on sex, ethnicity, age and serum creatinine.
Routine reporting of eGFR was one of the recommendations of the National Service Framework for Renal Services. It has allowed early identification of kidney disease in literally millions of people. Early investigation and treatment of kidney problems has become a core part of general practice.
All people with kidney disease are now entitled to a care plan designed around their individual needs to keep kidney function as good as possible for as long as possible and to reduce cardiovascular risk. We are already starting to see improvements in blood pressure control in general practice and earlier referral to the multi professional kidney team to support individuals in making decisions about transplantation and dialysis when replacement therapy is needed. The eGFR is also the way chronic kidney disease is staged and monitored over time. Staging and monitoring also requires assessment of proteinuria by measurement of the albumin creatinine ratio, or ACR, in the urine. Proteins in the urine, of which albumin is the main protein, indicate a higher risk of progressive kidney disease and of cardiovascular risk.
Thankfully, protein in the urine can be treated by certain drugs including the ACE inhibitors and ARB class of blood pressure drugs. So regular, accurate assessment of eGFR and ACR are absolutely essential for people with kidney disease. The eGFR tells GPs when specialist kidney referral is needed – when the eGFR falls below 30 mls per minute. It helps the patients, nurses and doctors in getting the timing of transplantation before dialysis right (at 15 mls per minute or below) and/or in the preparation for dialysis such as when to operate to create a fistula for haemodialysis. Looking at an individual’s eGFR over time tells you if the kidney function is stable, improving or declining – it acts as a trigger for further evaluation and changes in treatment as well as providing a window on the future. But eGFR doesn’t tell you everything and used alone can be misleading.
The eGFR needs to be interpreted cautiously at the extremes of age and extremes of body mass, it can be interfered with by some drugs, it is not always helpful in the acute situation and the accuracy of the equation used hasn’t been proven in all ethnic minority groups and clinical situations including transplantation. It is not a perfect measure of kidney function, rather it provides a guide.
Even eating a meal before the measurement can affect the reported level. There are equations for using children but the routine laboratory based equation is not suitable for people under the age of 18 years. It’s of no value in people receiving dialysis. Hence the need to look at more than one thing to get the right answers – the ABC of kidney disease is know your: A ACR – albumin creatinine ratio in the urine; B blood pressure – aim for perfect blood pressure control; C creatinine for the eGFR = percentage kidney function
The introduction of eGFR into the National Health Service has helped demystify kidney disease. It has promoted the understanding of kidney disease by doctors and nurses. I would encourage all people with kidney disease, or at risk of kidney disease, to know their eGFR and to keep track of how it is changing. Your eGFR should be discussed as part of your care planning. People with kidney disease and the healthcare professionals who care for them need to speak the same language – so you need to know your eGFR, your ACR and your blood pressure.
published in Kidney Life, Autumn issue 2009
The leaflet aimed at patients explains the meaning of proteinuria, cases, signs and tests to determine proteinuria. It also covers how to manage diabetes and blood pressure with proteinuria. This is part of a pack of information on proteinuria testing. Information sheets for GPs and labs have been published on the Department of Health website.
Monday, 7 September 2009
The health sector is responding by signing up to the bold new climate change campaign 10:10. Ten NHS organisations plus the BMJ Group have committed to cutting their carbon emissions by 10% in 2010 from a 2009 base year. The target is challenging but by no means impossible for many organisations. The NHS ten include one Strategic Health Authority, several large acute teaching hospitals, two PCTs, a mental health trust, and a GP Surgery.
Green Nephrology is leading the way, Dr Andrew Connor took up his new post as "Green Nephrology Fellow" at the Campaign for Greener Healthcare on 1 September. Andrew is a specialist trainee in kidney medicine and is generously funded by NHS Kidney Care. Over the next year, he will be exploring the environmental impacts of kidney care and working with NHS staff and patients to improve practice in kidney units. Andrew has an ambitious programme of work and is supported by both the British Renal Society and the Renal Association who co-Hosted a Green Nephrology Summit earlier in the year. Given the water, electricity, dialysis consumables and amount of drugs used in Kidney care, let alone the travelling back and forth to renal units, it’s likely that kidney services can make a big contribution.
The Royal Cornwall Hospital Renal Unit has already begun a comprehensive green project and I was delighted to learn that Simeon Edwards and the team have been shortlisted for a Health Service Journal award this year . Their action plan includes energy saving in lighting and heating, greener pharmaceuticals and consumables , water reduction, managing transport to reduce carbon emissions at the same time as improving patient transport quality in addition to reducing, better management and increased recycling of waste . Everyone in the unit, patients included are playing their part. I am sure that we will all want to wish Simeon and colleagues good luck for the award. There is lots we can learn from the Cornwall team - perhaps the most import thing being - a thousand mile journey begins with the first step.
Less of the same is not the answer; we need to transform clinical services to sustain healthcare. The waste water reclamation initiative at Kent and Canterbury and the Chronic Kidney Disease electronic advisory service at Bradford are examples of different ways of doing things; both save money and save carbon. For a capital investment of £14,000 Kent and Canterbury Hospital have made an annual saving of £8000 and shown a 38% reduction in mains water usage. Well done Steve Milne.
Looking to the future, every kidney unit is going to be asking green questions, Green Nephrology and Andrew Connor’s work will help the kidney community and provide answers for some of these questions. The actions are for all of us.
Monday, 17 August 2009
Thursday, 13 August 2009
We are experiencing some problems with various interpretations of the safer practice notice when applied to outpatient haemodialysis patients.
I have been asked to ensure that every patient has a new identification wristband attached, each time they attend for outpatient dialysis.
The nurses are being put into a panic by being told that it is 'illegal' to give any drug such as epo/iron during dialysis (and even saline washback at the end of dialysis) unless there is a wristband in place.
Looking at the actual NPSA document, it appears that it applies to "hospital inpatients in general acute and community settings". This infers that outpatient haemodialysis, as a chronic disese treatment., is not within the remit.
I am sure that this is not the only dialysis unit to be asking themselves this question, and so I wondered if you could clarify. David Gledhill, Unit Manager - Haemodialysis, North Cumbria University Hospital NHS Trust
A: Dear David, as you say, the wristband Safer Practice Notice specifies that the recommendations are to implemented by " all NHS organisations in England and Wales that use patient wristbands". It also says that the SPN "applies to hospital inpatients in general acute and community settings." As such, it is not necessary for outpatients attending for haemodialysis at renal units to wear wristbands. However, the purpose of the Notice was to make patient identification as safe as possible and that must be a concern in respect of patients attending for regular haemodialysis. The Safer Practice Notice relating to correct blood transfusion, recommends in 3b photo identification cards for patients who undergo regular blood transfusions. While few dialysis patients get regular blood transfusions, many of course get intravenous iron and quite frequently people on dialysis are receiving intravenous antibiotics. It may be appropriate to consider whether patients undergoing regular haemodialysis would be safer with a similar approach.
The papers and news channels are full of the effects of the recession. “Recession starts to threaten home life” pronounced The Times leader on 12 August. Unemployment with its increasing alcoholism, domestic violence and drug addiction is set to surge the paper claims. The social and health consequences of economic downturns are well known. Not a day goes by that the NHS and other public services are not in the limelight for how we will cope with the global financial crisis. As the NHS faces its biggest financial challenge for decades what is absolutely essential is that we don’t lose sight of quality in healthcare. We need to focus on high value activities – early detection of kidney disease and good control of blood pressure, planning of renal replacement therapy including pre-emptive transplantation, home dialysis and helping those on the conservative kidney care pathway stay in their own homes. We know that the number of people with advanced kidney disease will continue to grow over the next decade. That’s inevitable given the aging population let alone the increasing obesity, diabetes and hypertension epidemics. So how can we afford high quality care in a “flat cash” environment? Flat cash is a term you will hear more of, it means what it says, little or no absolute increase in funding for the NHS after 2011 for some years. Most sources speculate that the NHS will barely keep pace with inflation. Add in the increased demand of an older population and you will realise the serious questions the public, our politicians and the health service faces.
So how can we afford to increase quality for more patients at a time of effectively less cash? Well that was the subject of a Kidney Care Commissioning Workshop that Sir Muir Gray and I hosted last month. We do need efficient and effective pathways for those elements of care that add value – creating a fistula before the need for dialysis, using the 18 week pathway to accelerate live kidney donor transplantation, early recognition and prompt treatment of acute kidney injury to name a few. We also need to identify and eliminate low added value activities – hence the title of this blog.
Intravenous iron is an essential component of the management of anaemia of chronic kidney disease – of that there is no doubt. It improves the efficiency of EPO or, as we should call EPO now, Erythropoietic Stimulating Agents or ESAs. Now, I do have a bit of bee in my bonnet about this but why does so much intravenous iron entail long trips back and forth to the main kidney centre? Perhaps safety – well no; patient convenience – certainly not; what about clinical governance, by which I mean clinical responsibility since the hospital team have usually prescribed the iron treatment – well, no again.
The cynical might say it’s the budget. Who pays for the iron? And moving money from a hospital or secondary care budget to, for instance, a local health centre or community care team does feel a little like playing 3 dimensional chess. The budget is actually not an insurmountable problem – clearly giving IV iron locally without the inconvenience and cost of travelling to the hospital is better value for money than the IV iron service we provide for many patients at present.
Education, support and experience of colleagues in primary care has until recently been the stumbling block. That’s why I was so pleased to see “A guide to the administration of intravenous iron for people with anaemia of chronic kidney disease (CKD) in a non acute hospital setting” when it was published. It provides all that’s necessary to set up a local IV iron service.
What other low or no value activity would you like to confine to Room 101? Answers on a postcard (well email please); seriously, I would very much like to hear suggestions and views from patients, carers and all those working in kidney care. Anonymity will be preserved if you like.
Do let me have your ideas and do use the IV guide to improve local kidney anaemia management.
Tuesday, 4 August 2009
Incentives for home dialysis – End stage renal disease: CMS should monitor effect of bundled payment on home haemodialysis utilisation rates
Average costs per treatment for haemodialysis in a facility, is quoted at $243 versus $133 for haemodialysis at home, with peritoneal dialysis at home averaging $94. In the USA, training is billed separately, for instance $20 per training session to train a patient how to conduct haemodialysis, for 3 sessions per week for up to 3 months.
We have been looking at the findings in the Dialysis Best Practice Tariff Group to see what parallels there might be for our system. In the USA they have decided to bundle payments and will be monitoring the impact – I and I am sure others will be watching this with interest.
The NHS Clinical Knowledge Summaries (formerly PRODIGY) are a reliable source of evidence-based information and practical 'know how' about the common conditions managed in primary care. They are aimed at healthcare professionals working in primary and first-contact care.
Monday, 3 August 2009
Put another way, the challenge is to continue to drive up quality whilst improving productivity – a challenge which means harnessing and spreading innovation. It means going further faster rather than slowing down. No one in the health service wants to see a reduction in quality of care. Neither do the patients nor the public, who fund the system, wish to see that. So quality remains the organising principle of the NHS but now innovation, productivity and prevention are sitting alongside quality as core objectives for the whole health system and everyone who works in or with our health system.
What will this mean for kidney services? Well we know that the number of people with kidney disease will continue to grow because the population is aging and because of vascular disease and diabetes. The number of people needing a kidney transplant or dialysis will continue to grow. Conservative kidney care, the no dialysis option, has been highlighted by NHS Kidney Care as an area for quality improvement. The recent NCEPOD report into acute kidney injury is a chilling read – acute kidney injury is often unrecognised and when identified poorly managed. None of these aspects of kidney care can be put on a back burner. Lord Darzi’s Next Stage Review put in place a compelling, ambitious and patient-focussed vision. We must plan to deliver significant efficiency savings whilst remaining true to our vision of high quality care for all. I believe that is possible because doing the right thing, at the right time, every time almost always costs less and the staff in the health sector really believe in providing quality of care.
Over the past 5 years, since the publication of the National Service Framework for kidney services I have seen quality move from a rather ill defined concept to clear objectives in the plans of every kidney service covering all the dimensions of quality-safe, timely, effective, efficient, equitable and patient centred. Since 2006 chronic kidney disease has been part of the primary care quality and outcomes framework. Quality metrics have recently been published covering much of the kidney care pathway including end of life care. The development of a comprehensive mandated data set means we will get even better information in the future. The dataset has also led to inclusion of aspects of kidney care in the Commissioning for Quality and Innovation (CQuIns) payment system for acute trusts and raises the possibility of kidney care being considered as part of the quality accounts.
In my visits across the country I have the privilege of meeting many patients and frontline staff. Nearly everywhere I go I learn about innovations that have been tried and tested locally. At the British Renal Society meeting in June there was a wealth of good practice on show, but we have to sustain, spread and systemise our quality improvement projects.
Productivity in chronic kidney disease management is sometimes difficult to demonstrate. Let me ask you a question – what is cheaper – a high rate of line use for vascular access with a high rate of MRSA and other infections leading to unnecessary bacterial endocarditis and spinal abscesses or good pre end stage renal failure care offering choice with shared decision making and establishing vascular access before the need for haemodialysis. Or for that matter performing a live donor kidney transplant before the start of dialysis. No need to answer. The 62% reduction in MRSA we have achieved by improving our systems for advanced kidney disease care and establishing vascular access at the right time has resulted in massive productivity gain as well as improved the experience and outcome of kidney care. So in chronic diseases, as opposed to for instance some surgical specialties, we need to consider the whole pathway of care not just the cost of a single procedure or admission. We need to focus commissioning on pathways of care and on population needs rather than episodes of care. At NHS Kidney Care we are taking just that approach for peritoneal dialysis and will extend the work to other modalities.
Kidney disease is part of NHS checks the ambitious programme to offer vascular risk assessment to every person between 40 and 74. This programme will result in people understanding their individual risk much earlier than they do at present. The preventative dividend of including chronic kidney disease in the Quality and Outcomes Framework is already being seen in a reduction in “crash landers” or unplanned starts on dialysis.
So the quality, innovation, productivity and prevention agenda is already part of our culture and is embedded in the workstreams of NHS Kidney Care whose mission is to ensure a complete, equitable and consistent implementation of our NSF. When the NHS was formed in 1948 the national debt to GDP was 213%. Together we can deliver better services at a better price.
Wednesday, 29 July 2009
A: Dear Fiona, It was a pleasure to meet at the Cumbria & Lancashire Kidney Care Network on 29 June. Thank you for raising the issue of kidney outpatient visits and seeking my views and comments on new to follow up ratios.
The Modernisation Agency’s publication 10 High Impact Changes for Service Improvement and Delivery published in 2004 highlighted the need to avoid unnecessary follow-ups. It identified orthopaedics, ENT, ophthalmology and dermatology as specialities where there could be 0.5 million fewer follow-up appointments per year. The first question should be “is a follow up visit really necessary?”. Automatic secondary care follow up should be used only where necessary and clinically appropriate. Ten High Impact Changes suggested that hospitals should aim to have an overall new to follow-up appointment ratio of below 1:3. It is worth reading this document because it contains advice which is still relevant today such as co-developing services with patients and carers, setting local goals and working closely with commissioners. The 18 week pathway for chronic kidney disease is another valuable tool that you could use to monitor flows and activity.
Kidney care has changed considerably over the past few years since the publication of the NSF and the move to systematic estimated Glomerular Filtration Rate (GFR) reporting with inclusion of a CKD domain within the QOF for primary care. Prior to 2006, early kidney disease was rarely detected in primary care and indeed advanced kidney disease was often missed until very late. In many parts of the country colleagues in primary and secondary care are working together to achieve the local implementation of the Royal College of Physicians and now NICE Guideline 73 so that people with kidney disease are seen and managed appropriately across the whole pathway.
For instance, Wirral NHS has developed a local enhanced service for primary care management of chronic kidney disease and should be one to watch. It is based on NICE Guideline 73 for chronic kidney disease and the local operational guidelines have been developed by general practitioners and renal physicians together.
In chronic diseases and particularly where the situation has been changing so quickly, with all the education and system support gaps that that has revealed, I think there are considerable advantages to approaching service design including outpatient capacity and metrics based on the patient pathway rather than an arbitrary ratio.
Clearly, people with stage 4 or 5 kidney disease, require considerable interaction with secondary care for the planning of renal replacement therapy, delivery of dialysis and transplant follow-up. Many people with primary kidney disease eg PKD or those on treatment for glomerulonephritis benefit from regular care follow up and clearly people receiving dialysis or with a functioning kidney transplant need follow-up care. Conversely, the majority of people with stage 3 CKD do not require continuing follow-up in secondary care but in a proportion with primary kidney disease, rapid decline, complications of chronic kidney disease or “treatment failures” specialist input is necessary to optimise outcomes.
NHS Kidney Care is currently supporting a range of initiatives to support early detection, provide decision support into primary care and to pilot virtual nephrology services. This is in addition to the broad range of education materials that we have produced and the development of quality metrics across the whole pathway. I would be more than happy to share details of these other initiatives with you at an early stage if you think it would be helpful in your local service design planning.
I am encouraged by the excellent work that I have seen across the country. Early detection and appropriate management of chronic kidney disease aligns completely with the quality, innovation, productivity and prevention agenda.
Wednesday, 22 July 2009
(2) when he plans to publish the patient information leaflet on identifying unhealthy kidneys; and what plans he has to publicise its launch.
Ann Keen: The patient information leaflet on proteinuria is being developed in partnership with clinicians and patients. This is to be part of a pack of information on proteinuria testing already published on the Department's website for general practitioners and laboratories.
This can be found at:
We are in the process of determining how best to promote the leaflet widely before publication by early autumn.
Monday, 20 July 2009
Since many of these infections occur in patients established renal failure (ERF) additional data on the type of vascular access of these patients has been collected by this system since 2007 and published in the UKRR annual report. The system for capturing this enhanced data relies on sending this email alert to the renal unit whenever a patient in ERF who develops MRSA bacteraemia is recorded in the system. The alert asks the renal unit to access the system to complete the relevant data for that patient. Each renal dialysis unit in England should identify 2 contacts to receive these email alerts and be responsible for completing the data on MRSA bacteraemia.
I have written to all renal unit CDs outlining the system that the Health Protection Agency and Trusts have in place.
Find out more and access the system here
Patient transport survey 2008, first phase launch
Patient transport survey results launched
Thursday, 16 July 2009
Wednesday, 15 July 2009
Gillian Merron: Both the Department and the Medical Research Council support kidney disease research. Available annual expenditure data are shown in the following table. The National Institute for Health Research’s (NIHR) clinical research network is currently supporting 38 studies concerned with renal disease.
View the table here, or follow the link
Ann Keen: Awareness of the risk of chronic kidney disease is being raised as part of the NHS Health Checks programme and we are also developing a patient information leaflet on identifying unhealthy kidneys, which could lead to earlier identification of chronic kidney disease. This information will be made widely available. There is also information on “knowing the symptoms of kidney disease” including a self-assessment tool on the NHS Choices website which can be found at: www.nhs.uk/Tools/Pages/Kidneydisease.aspx http://www.publications.parliament.uk/pa/cm200809/cmhansrd/cm090708/text/90708w0019.htm
Tuesday, 14 July 2009
There are photographs and I was pleased to see I had chosen a better week to be cycling in and around St Jean Pied de Port than John and Paul who had quite a rainy first week.
Do look and do sponsor Paul (raising money for British Renal Society) and John (raising money for Guys & St Thomas' KPA). You can also listen to John waxing lyrical on his audio diary.
Thursday, 9 July 2009
A: Dear Andy, I am pleased to hear you are enjoying the pleasures of Paris and that the PKD email group that Tess has established is thriving. Inter-cranial aneurysm rupture is a rare but devastating complication of autosomal dominant PKD. It occurs in about 1 in 20 people with PKD without a family history but in up to nearly 1 in 5 people in whom there is a family history of rupture. This compares with about 1% in the general population. Rupture also occurs on average 10 years younger in people with PKD; the youngest reported case being a 6 year old boy. Aneurysm rupture is associated with a combined mortality or severe residual disability rate of about 35-55%. However, treatment of aneurysms by either neurosurgical clipping or endovascular treatment also carries an unacceptably high combined high mortality – severe disability rate of 21-34%. Some individuals make remarkable recoveries such as Alberto Contador who collapsed following an aneurysm rupture during the Vuelta a Asturias, Spain (May 2004), but who has subsequently gone on to win the Tour de France in 2007 and may possibly in 2009.
In the general population, size greater than 1 cm, location and history of previous rupture are the major risk factors for rupture but in PKD the situation is less certain and it has been suggested that half of all ruptured aneurysms in PKD are under the 1 cm threshold. Aneurysm formation rupture also appears to run in families and there is some early evidence of genetic linkage and risk. Recent studies have concluded that the outlook for asymptomatic aneurysms in PKD is excellent. The only factor that seemed to correlate with development of new aneurysms was a history of previous rupture. Given this uncertainty we really don’t know which patients we should be screening for asymptomatic aneurysms.
Patients who have suffered a previous rupture appear to a higher risk group who require life long screening. For asymptomatic patients, the presence of a strong family history of rupture (at least 2 first degree relatives) remains the best predictor of rupture (it increases risk by 4.4 times) and the case can be made for screening this group. The evidence does not support routine screening of all PKD patients but all PKD patients should have good control of blood pressure, be advised about smoking cessation and limiting alcohol consumption to within health limits as these treatable and lifestyle factors are key determinants of rupture. In the future we may have genetic tests that help us assess risk but at the moment there isn’t a UK wide consensus on the approach that should be taken in people with PKD who might have asymptomatic aneurysms. Best wishes, Donal.
Polycystic Kidney Disease Charity (UK)