New global report highlights silent epidemic of kidney disease and neglect of treatment and prevention in all countries
An estimated 1 in 10 people worldwide have chronic kidney disease
Despite one in 10 people worldwide having chronic kidney disease, a new global report – The Global Kidney Health Atlas – presented at this week’s World Congress of Nephrology in Mexico City (21-25 April) and compiled by the International Society of Nephrology (ISN) and kidney health experts worldwide – highlights the huge gaps in kidney disease care and prevention in both developed and developing countries, with many countries not prioritising kidney health. A summary of the Atlas is being published in the Journal of the American Medical Association (JAMA); and a roadmap to improving kidney care will also be published in The Lancet.
The kidneys are vital organs in our bodies, removing waste and excess water and controlling the acidity balance of our blood. Chronic kidney disease (CKD) is the gradual loss of the kidneys’ abilities to perform these essential functions, and can be caused by high blood pressure, diabetes, obesity, smoking and other risk factors. One in three people in the general population is at increased risk of CKD. And although an estimated 10% of people worldwide have CKD, estimates suggest 9 in 10 of those are unaware of their condition.
Among high-income countries, Saudi Arabia and Belgium have the highest estimated CKD prevalence (24%), followed by Poland (18%), Germany (17%) and the UK and Singapore (16%). Norway and the Netherlands have the lowest estimates at 5%. The USA’s estimated prevalence is 14%, while Canada and Australia are on 13%.Globally, estimated CKD prevalence worldwide varies from 7% in South Asia and 8% in Africa to as high as 11% in North America and 12% in Europe, The Middle East, and East Asia, and Latin America. (see p39 of Atlas and link below)
If left untreated, CKD is a major risk factor for kidney failure and subsequent cardiovascular disease and death, and even for patients who don’t die, they can progress to end-stage kidney disease - meaning dialysis or transplantation in richer nations, or an early death in those countries that don’t provide ready access to these services. Worldwide, an estimated 1 million people die each year from untreated kidney failure. Furthermore, such are the dangers of CKD that those with the condition are up to 20 times more likely to die of other causes (largely cardiovascular diseases such as heart attack or stroke) before they ever reach the point of dialysis or transplant care.
“A diagnosis of CKD does not mean that you will need dialysis or a transplant, but does signal that you are at risk for many health problems, including heart disease, strokes, and infections,” says Adeera Levin, President of the International Society of Nephrology which produced the Atlas, and a Professor of Medicine at the University of British Colombia, Vancouver, BC, Canada. “People in the earlier stages of CKD can be treated with blood pressure lowering drugs, diet and lifestyle, and can maintain a good quality of life. It is vital therefore that all countries improve their rates of early diagnosis and treatment. However, our Atlas shows that, across countries of all incomes, many governments are not making kidney disease a priority. This makes no sense, as the costs for treating people with end stage kidney disease are enormous, along with the devastating effect it has on patients and their families.”
The main findings of the Atlas will be discussed as part of the International Society of Nephrology’s Global Kidney Policy Forum, attended by multiple government representatives, nephrology leaders, patient groups and opinion leaders that include the Editor-in-Chief of The Lancet, Dr Richard Horton.
The Atlas highlights the low priority given to kidney care in many settings, despite its links to adverse health consequences and the enormous cost of end-stage care. For example, although only 1 to 2 in every 1000 people (0.1-0.2%) in high-income countries receives dialysis or transplantation, these services use up a staggering 2-3% of the total health budget in those countries. For every one person living on dialysis or kidney transplant, there are as many as 100 people with an earlier stage of CKD that if appropriately identified and treated might have their risk of progressing to kidney failure and/or development of CVD mitigated. And for the cost of every person treated with dialysis or transplantation, around 10 people with an earlier stage of CKD could be treated and prevented from progressing.
Ironically, although high-income countries have the highest costs for dialysis and transplantation, only one in three (29%) HIC considered CKD a priority, compared with almost 2 in 3 (59%) low income countries. Within western Europe, for example, only the UK, France and Spain considered HIC a health priority. And European countries were not alone in their low prioritising of CKD – experts in Australia, Canada, the USA, and New Zealand also said their governments were not considering HIC a priority. Yet encouragingly, at the other end of the scale, LIC such as Burkina Faso, Ethiopia and Nepal were among those, that despite their poverty and poor healthcare systems, recognised CKD as a priority.
While CKD can affect anyone, people are at higher risk if they have any one or more of a number of risk factors: these include high blood pressure, diabetes, obesity smoking, being aged 60 years or over, having established cardiovascular disease, having a family history of kidney failure, and being from a high-risk ethnic group or having a history of acute kidney injury (AKI). Acute kidney injury can be caused by infections, dehydration or damage from medications or ingesting toxic drugs. “A general lack of awareness of CKD, among patients and family doctors alike, and a lack of symptoms in the early stages, means that kidney function is usually hugely reduced by the time symptoms arise,” says Professor David Johnson, co-chair of the Global Kidney Health Atlas, and Professor of Medicine and Population Health at the University of Queensland, Brisbane, and Director of Queensland Renal Transplant Services, Australia. “That’s why we recommend anyone with any of these risk factors could and should request a kidney health check from their family doctor. A simple blood and urine test and blood pressure check are all that are needed.”
Tests for CKD measure the rate at which the kidneys filter the blood (known as Glomerular Filtration Rate [GFR]), and also other factors such as protein in the urine. High levels of protein in the urine indicate the kidneys are no longer working well. And even if these tests all come back clear, doctors recommend repeat screening every year if risk factors are still present. Simple lifestyle advice including a healthy diet low in salt and high in fibre, more physical activity, stopping smoking, and good control of diabetes and high blood pressure if present can slow the rate of progression of CKD by up to 50% and in some cases reverse damage.
“Even among high-income countries with universal health coverage, who are motivated to avoid CKD progressing to end stage kidney disease, there are problems,” says Professor Aminu Bello, also co-chair of the Global Kidney Health Atlas Assistant Professor of Medicine at the Division of Nephrology and Immunology, University of Alberta, Edmonton, AB, Canada. “However in countries such as the USA, in which many aspects of prevention are excluded from care, and also many developing countries, the situation is even worse.”
In low-income countries especially, there is limited access to blood pressure medications and inadequate risk factor control, with many low-income countries having no access to dialysis or transplantation technology. “Developing countries urgently need improved access to basic blood and urine tests for kidney function, and low-cost dialysis and transplantation systems must be developed to help those in need in these countries,” adds Professor Johnson. “Peritoneal dialysis systems - that are a lot less labour, power and cost intensive then full dialysis technology used in high-income countries - should be established or expanded in developing nations to help them cope with demand.”
Some key findings from the Atlas include:
- CKD prevalence worldwide varies from 7% in South Asia and 8% in Africa to as high as 11% in North America and 12% in Europe, The Middle East, and East Asia, and Latin America. (p39 of full Atlas)
- The global silent epidemic of CKD can only grow, since risk factors such as obesity, diabetes, smoking and high blood pressure continue to grow in many regions (p29-39)
- Availability of dialysis and transplantation therapy varied by almost 1000-fold worldwide, with treatment rates from 2.8 per million population in Rwanda to over 2000 per million in Japan (p41)
- High-risk ethnic groups had the lowest screening rates of any high-risk populations for CKD, even in high-income countries, where just one quarter are screened (26%) (p95)
- Just over one third (36%) of countries that provided information for the Atlas recognised CKD as a health priority. Unusually for a chronic disease, more low-income countries (59%) and lower-middle income countries (50%) recognised CKD as a health priority than HIC (29%) or upper-middle income countries (17%). (p14 and p103, and link below)
- Less than a quarter (24%) of all countries reported an active CKD detection programme. This means active screening of those at high risk through specific screening processes, and active screening of population at-risk through routine health encounters. For HIC, the figure was higher (32%) while only one LIC (6%) — Togo — had such a programme. (see extra information link below)
- Less than half of countries (41%) were able to determine prevalence of AKI in their populations, even requiring dialysis; for less serious AKI, this fell to one in five countries. Overall, problems obtaining strong data on AKI prevalence and treatment were much worse for AKI than CKD. (p136)
- Apart from Germany and the Netherlands, all countries included in the Atlas reported nephrology workforce shortages, whether nephrologists, specialist nurses and health workers, or all of these. Unsurprisingly 9 of 10 countries with the lowest density of nephrologists were in Africa. Lithuania and Taiwan had the highest density of nephrologists worldwide; and Malawi and Mozambique the lowest. In Western Europe, Spain had the highest nephrologist density and the UK the lowest. (p65 also in the JAMA paper)
- Lack of awareness of CKD among primary care physicians was highlighted as a major problem in the fight against CKD, even in HIC, where two thirds of primary care physicians were rated as having extremely low (8%) or low/below average (58%) awareness of the condition. (p122, p143)
Data from the USA renal Data System shows spending on all CKD rose from $US 41.2 billion in 2010 to 50.4 billion in 2014, a 22% increase in cost. This amount exceeds the entire national budgets of many developing nations. (p16 – but please note this point is already published information and has been included simply to emphasise the huge costs of kidney disease to economies)
“This is the first attempt to capture the capacity and readiness of nations for kidney care, and it demonstrates significant inter- and intra-regional variability in the capacity of various nations across the globe. The findings have immediate implications for guiding policy development towards establishment of robust kidney care programs, particularly for low- and middle-income countries,” says Professor Bello. “The findings will also be critical for engaging key governmental and non-governmental stakeholders to support countries in improving the quality of kidney care. Finally, the data can be used as a baseline to hold countries to account by measuring national and regional progress over time.”
“The next steps to improve kidney care delivery are to focus on awareness and prevention through creating and disseminating guidelines on both CKD and AKI that are accessible and relevant to their intended audience, especially patients, family doctors and other non-kidney specialists,” adds Professor Johnson.
Professor Levin concludes: “Increasing appropriate services at primary care level and more active CKD detection programmes, ideally integrated with other chronic disease detection programs, will help identify patients before they develop late stage kidney disease and need dialysis or transplantation, resulting in patients maintaining good quality of life and huge savings for the healthcare system.”
See the full Global Kidney Health Atlas
We regularly work with the National Institute of Health and social Care Excellence (NICE) to add the perspective and views of kidney patients into their work. In 2011, the first ever CKD Quality Standards were produced, outlining markers of good quality for kidney care, including support for the patient’s mental as well as physical well-being, and recommending that a care planning discussion about treatment is held between the patient and doctor or nurse.
In 2017, NICE is reviewing the standards and have just put forward a proposal (external link). We're surprised to see that most of the standards have been removed and while we are all in favour of simplification we do not believe that removing the need for psycho-social support, or for a care planning discussion is the right thing to do for kidney patients.
We have made it clear that we want some of the previous standards to be retained and have worked closely with our colleagues in the Renal Association, British Renal Society, Renal Psychology Group and the renal services Clinical Reference group and they have also expressed these concerns in their responses to NICE.
We believe that people should be given information that’s appropriate for their kidney disease, and that the way in which they will be cared for should be documented and agreed with them. This standard should therefore remain. Furthermore we would like the standard recommending that “People with kidney failure have access to psychosocial support (which may include support with personal, family, financial, employment and/or social needs)” to be retained. Through our own work we fund much of this type of vital support for patients, yet NICE states that “the previous recommended quality standards are no longer considered national priorities for improvement but may still be useful at a local level”. This gives a disappointing and inaccurate message that these are not important for kidney patients. Something we know just simply isn’t true.
We will keep you updated on the outcome of the consultation.
Last year the British Kidney Patient Association worked with patients and clinicians in the kidney community to successfully influence NICE’s (the National Institute for Health and Care Excellence) decision to restrict availability of immunosuppressant drugs to some kidney transplant patients. We’re pleased that NICE are now looking at this issue again so that we can give clarity to kidney patients who were alarmed by the initial proposals; 2 of our Patient Advisory Group members attended a review meeting this week, with one of them being asked by NICE to be a patient expert on this issue. We will keep you posted on any developments in this area as and when they happen.
Latest newsletter from the NHS England renal services Clinical Reference Group. As a member, the BKPA brings the views of patients to the group.
We have now held the second meeting of the Renal Services CRG and I thought it would opportune to provide some feedback and an update. Once again I would like to encourage you to get in touch if you have any issues that you would like to discuss. Please feel free to disseminate this newsletter.
I was also contacted regarding a perceived increase in physical and psychological abuse towards staff in some dialysis units. I have discussed this with a number of colleagues around the country and I did not receive feedback that this was a major problem. However if this is something that is widespread than I would be grateful for any feedback although I fear that the CRG has limited powers to intervene.
Carbapenemase Producing Enterobacteriaceae (CPE) Screening
I am aware that as clinicians we are challenged on a regular basis to determine the risk of our patients acquiring resistant bacteria and in particular that the moment, CPE. Public-health England has developed a number of toolkits and these can be accessed at the following link; https://www.gov.uk/government/publications/carbapenemase-producing-enterobacteriaceae-early-detection-management-and-control-toolkit-for-acute-trusts
To address these concerns there is currently an effort to work alongside Public Health England to produce a renal dialysis-specific set of guidelines. These should be available by the end of 2017 but in the meantime I would suggest that you discuss issues relating to CPE with either your infection prevention and control teams or public health protection teams. I would like to thank Clara Day for leading on this initiative on behalf of the CRG.
Successful Commissioning Through Evaluation (CtE) proposal
In my last newsletter I mentioned that we had submitted a CtE proposal for Rituximab in the treatment of membranous nephropathy that is refractory to conventional therapy. I am delighted to report that this bid was successful and funding has been obtained for the treatment of up to 120 cases over the next two years. At present we are appointing a clinical chair and once set up they will be open to applications according to the defined entry criteria. I will keep you informed regarding these developments. I would like to thank Will McKane and Paul Brenchley their efforts in delivering this project.
Policy for Eculizumab for the treatment of the C3 glomerulopathy
I am sure that you will be aware of the recent decision by specialised commissioning to fund eculizumab for the treatment of a relapse in C3 nephropathy following transplantation. Further details are available at the following website:
We are currently establishing a pathway whereby units will be able to apply for funding of eculizumab if inclusion criteria are met. More details will follow.
At the recent CRG meeting in Manchester we enjoyed a presentation from Dr. Richard Preece, medical director of Devo Manc. He is leading the largest and most devolved STP in the country. He made it clear that there was no plan to reorganize the whole local healthcare system. Instead he saw the role of STPs was to identify areas that would benefit from restructuring or reconfiguration. Scrutiny of STP plans reveals a variable focus on renal services with increased emphasis in London for example. One piece of advice he did give was to engage with your local STP.
There has now been a consultation period over the proposed changes in tariffs for 2017/8 and 2018/9. Like many others we made a strong representation as a CRG regarding the proposed reductions in tariff. We were particularly concerned by the proportionately greater reduction in the multi-disciplinary outpatient follow up tariff. We were disappointed, although perhaps not surprised, that there has been no shift in position. On a more positive note we do know that tariffs are calculated from the annual reference cost collection and to help clinical directors and their finance colleagues make sense of renal reference costs and future changes, there will be a joint West and East Midlands costing workshop. For maximum efficacy we suggest that it is attended by clinical directors, renal units managers, finance managers and costers - Further details will follow but I am grateful to Clara Day, Clinical Director Renal West Midlands Network and CRG member for Value, for organising this event.
We have been involved in several initiatives to try and unify data collection and we are strongly supporting the UK Renal Data Collaboration led by the UK Renal registry. We are seeking to use this data to derive new renal dashboards for 2017/8. We would also like to ensure wider access to these dashboards so they can be used as a guide to performance in individual units. We will keep you informed of developments in this respect.
We are keen to support the work of Kidney Quality Improvement Partnership (KQUIP).
This excellent initiative is co-chaired by Graham Lipkin and Louise Wells and they have established six work streams for the coming year. I would encourage you to visit the “Think Kidneys” website for further information. In a similar vein I would also recommend the Kidney Health: Delivering excellence initiative which is currently being updated for 2017. Many of you may have noticed the “Get it Right First Time” (GIRFT) Initiative which is seeking to extend a quality improvement methodology developed in orthopaedics to renal medicine. Applications have been invited for the role of Clinical Lead and we are keen to work closely with the successful candidate to prevent duplication of workload.
The renal services CRG has been tasked to come up with a value proposal by the end of this month by NHS England. We have looked at a number of areas but currently favour a proposal seeking to repatriate transplant immunosuppressant prescribing from primary care, followed by a move to generic prescribing in the majority of kidney transplant recipients (but with a free hand to use other agents according to clinical need). In order to achieve this it will be essential to do a stocktake of immunosuppressive prescribing across England. I hope that you will be able to help in a brief (one page maximum) doodle poll if we proceed with this proposal in the next few weeks.
We are intending to hold the next CRG meeting in the Birmingham area towards the end of June and will be inviting local stakeholders.
To celebrate World Kidney Day on the 9th March 2017 Make Someone Smile is announcing 10 free fully funded scholarships for young adults aged 18-24 to take part in the Duke of Edinburgh Award Programme.
More than 1 in 10 people have chronic kidney disease in the UK. It’s a disease that not a lot of people know about and there is no cure. It is the silent killer. Young adults suffering with kidney disease are often isolated and excluded from participating in activities due to the nature of their condition and dialysis regime (dialysis is where a machine purifies your blood because your
kidneys are not working).
Working in partnership with the national charities NKF and BKPA and SEPKA the local patient led charity, MSS CKD has secured the funds to launch a Bronze DofE programme exclusively for young adults with kidney disease. Working with the Brighton Renal Unit young adults will be given the opportunity to learn new skills and take part in an expedition. The programme has also received support from the Tim Lewis Trust and Netigate an international tech company.
Pete Lancaster the founder of MSS CKD stated “As a carer of a kidney patient I know only too well the day to day challenges that a patient faces as they fight to stay alive. We founded MSS CKD to improve the lives of kidney patients and to celebrate world kidney day we are supporting 10 young adults to do something they would never have had the opportunity to do. We want to give them the chance to learn new skills and develop the confidence to progress in life”.
Paddy Tabor, Chief Executive of the British Kidney Patient Association, says: “The BKPA are delighted to be working with MSS CKD and the DofE award to develop and deliver an accredited skills development programme to aid young people’s transition to adulthood. We believe the programme will play an important role in helping young people with kidney disease develop the confidence, skills and ambitions to improve their life chances”.
The scholarships are being announced at 1245 level 8, at the Sussex Kidney Unit, Brighton Hospital on Thursday 9th March. To further celebrate the launch MSS CKD are also launching a global survey supported by the Swedish Tech company Netigate.
To find out more visit www.mssckd.com and spread the word, on World Kidney Day through social media.
The British Kidney Patient Association welcomes today’s announcement from NHS England that funding is finally being granted for the use of eculizumab in the rare condition known as C3 glomerulopathy following a kidney transplant. It is vital that we maximize the success of every single kidney transplant as there are still not enough donated kidneys to allow everyone who needs a transplant to have one. Tragically, some people die whilst they are on the waiting list.
Fiona Loud, Policy Director of the charity, said: "Some patients have been waiting for this decision for some considerable time in order to determine whether or not they will be able to go ahead with a kidney transplant. So whilst we are pleased with this decision, we are disappointed that it has taken two years, leaving patients in an uncertain situation. The longer people wait for a transplant, the less likely they are to have a good outcome."
Abi Longfellow is one such patient who has been waiting for a decision on this drug so she can have a kidney transplant and whose family took legal advice to try to secure funding. Today her parents, Jo and Andy said: “We are sad that we have had to take legal advice to argue for the treatment Abi needed and that it has taken so long for a decision from NHS England.
We are however extremely pleased and grateful that steps will be taken to move Abi forward for a kidney transplant and the drug treatment needed to save her life. Now another journey has really just begun as we wait for a suitable donor.
Today, the difference is in the knowledge that we finally have funding for the only treatment currently available to keep the precious gift of a transplanted kidney alive. Today we have hope.”
The British Kidney Patient Association, who supported Abi in her fight to secure funding, believes it is vital that we understand more about these rare conditions so that further treatments can be developed. We have contributed funding towards the establishment of a rare disease registry dedicated to kidney diseases. Called RADAR, this is the first ever database of its kind.
Rare forms of kidney disease affect approximately 12% of kidney patients. We believe that it is essential that people thus affected should be able to receive effective treatment where it is available and that this should not be deprioritised because their condition is rare. Some of these groups are very small indeed, with just one or two people, and for some there is no treatment other than dialysis or transplantation as the conditions inevitably lead to kidney failure.
The full story is on the NHS website
As part of our grants programme, in December 2016 funded a bowling trip for a group of young kidney patients. Gemma Hockey, Vanda Fairchild and Marie-Louise Turner organised the trip. Gemma talks about their experience and how important these days are for young kidney patients.
"The BKPA funded another great trip for young kidney patients. In December 2016 young people across the South East were invited to attend an afternoon of bowling, socialising, food and drink. There were 15 young people and three Young Adult Workers. The workers from Guys and St Thomas’, St Georges and the Royal Free organised the event which took place at Bloomsbury Lanes in Central London.
These events are important for young people’s emotional wellbeing. It is an opportunity for them to meet other patients of a similar age, going through similar situations as them. Many younger kidney patients report feeling like they are the only ones their age in the hospital, particularly if they have a stay on an adult ward with many older or elderly patients. Facilitating an event for young people to come together in a fun, and relaxed environment enables them to access peer support, share experiences and have some enjoyment associated with their kidney disease.
The group feedback was very positive and they all had a good time. The bowling was great fun, and had a great community feel. Those with disabilities were supported to bowl by other young adults at the event, ensuring that everyone was able to take part and enjoy the afternoon together.
When the bowling had finished we all enjoyed some delicious food in the diner. It was great to hear the conversation about their experiences and life in general while tucking into pizza!
Feedback from Laura, age 20: ‘I had a great time even if I wasn’t good at bowling! I made new friends and I’m looking forward to the next event’.
Thank you to the BKPA for their generous grant that ensured the event could happen and that young people could get together for this very worthwhile event."
Find out more about our work; including the grants, the information, and support we provide to thousands of kidney patients throughout the UK - about us.
None of our work would be possible without the support we receive, if you'd like to help support our work visit our get involved page.
Three years ago, in partnership with RCPCH and BAPN we developed and launched infoKID.org.uk (external link), an online resource of information on kidney conditions in children and young people. Today, the Royal College of Paediatrics and Child Health (RCPCH) has produced an evaluation report highlighting the impact it has had and suggestions for new developments.
According to the report, there are now around 8,500 visits to the site per month, and feedback from visitors was that the website easy to navigate (90%), the information is clearly organised (80%) and easy to understand (84%). In addition to this 90% of healthcare professionals who completed an evaluation survey told us they were signposting families to the infoKID website and 95% of these healthcare professionals believe infoKID is a useful resource for parents and carers of children and young people under their care.
“Excellent, reassuring resource. Definitely helped me as a parent sift through information. I felt less overwhelmed/isolated after knowing about this site. Thank you!!” (Parent/carer)
“Arguably one of the most useful developments in the last decade helping carers in the management of their children with kidney disease” (Healthcare professional)
Paul Bristow, Director of Marketing at the British Kidney Patient Association, adds: “We are delighted that infoKID has made such a good impression on both parents and health professionals alike. We know that timely access to good quality information is one of the main thing patients need and InfoKID is clearly delivering a real impact in this area.
Given that almost three quarters of people visited the site from mobile devices it is clear there is a great opportunity to develop this resource further so that even more people can access and use it. We look forward to working with the Royal College of Paediatrics and Child Health and the British Association for Paediatric Nephrology to turn the findings of this evaluation into real tangible benefits for patents and young people with kidney conditions as this resource develops.”
If you would like to read the report in full you can download it here: Download infoKID evaluation report (PDF)
Two new leaflets are available to download on our website
We have teamed up with Think Kidneys and the British Association for Paediatric Nephrology (BAPN) to introduce two new resources on our websites – patient information for young people and the carers of young people on the risks of acute kidney injury (AKI) and how to keep kidneys safe.
Developed by a working group of paediatric renal specialists the leaflets explain;
- The risks of AKI
- when to seek advice,
- and from whom to seek advice
The leaflets have had approval from our patient advisory group and the BAPN. Describing when young people might be at greater risk of AKI due to acute illness, how the kidneys work and the potential impact of some drugs they may be taking, the informative leaflets suggest when it’s necessary to get advice from their health care team.
Download 'Keeping your child's kidneys safe'
We are one of 68 charities calling on the PM to fund much needed change in health and care
Sixty-eight charity leaders have signed a joint letter to the Prime Minister calling for a revised funding settlement for health and care. The charities describe the current pressure on health and care as “not acceptable or tenable.” The signatories also call for the development of models of care that work for people with chronic needs and a reaffirmation of the government’s backing for the Five Year Forward View. The Budget on Wednesday 8 March provides the Prime Minister with a chance to help resolve the crisis facing health and care services.
Karen Smith and her husband Darren have a particular reason to be looking forward to Valentine’s Day this year…
"This Valentine's Day will be incredibly special as my husband is giving me the ultimate gift - one of his kidneys. When I first met him, my mum was very ill with kidney disease and pneumonia. We hadn't been together long but he offered to babysit my two children from a previous relationship while I visited her. She recovered from pneumonia and went on to see us get married ten years ago, (mum always said he was a keeper!)
He is definitely proving that this Valentine's Day; he is giving me another chance at life and having seen how much kidney disease affected my mum I think it has made the decision easier for him. I can't thank him enough."
Darren adds, “Even though she hides her symptoms from most people, I see how she suffers. What I want more than anything is to see her with more energy again. The transplant has been arranged for Valentine's Day and I can't think of a better date to show my love to her.”
There are almost 5,000 people like Karen waiting for a kidney in the UK; more than the total number of people waiting for any other organ combined. This year NHS Blood and Transplant have launched a campaign calling for people to consider donating a kidney to someone in need, be they a stranger, friend or loved one.
Help us unite with one powerful voice for World Kidney Day 2017 by organising an activity or event to draw public attention to the importance of kidney health, what can be done to protect kidneys before disease strikes, and to assist patients who already have kidney disease. This year there is also a particular focus on kidney disease obesity.
Once again the UK initiative is being led by the Kidney Charities Together group comprising the five leading UK kidney charities including the British Kidney Patient Association.
To help with your event, we have produced a Support Pack containing:
- 5 A4 kidney health awareness posters
- A5 kidney health awareness flyers
- World Kidney Day logo stickers
- A poster to help advertise your event
- A guide to working with the media
- A guide to using social media
- A sample press release
- A sample letter to your local MP
Further details on getting involved are available on the World Kidney Day website along with more ideas for activities and additional downloadable resources.
The 2017 World Kidney Day campaign in the UK is supported through grants from Amgen (Europe) GmbH, Astellas Pharma Ltd, Fresenius Medical Care, Otsuka Pharmaceuticals UK and Pharmacosmos UK
The first ever national CKD audit shows a worrying lack of urine tests for those most at risk of CKD.
Chronic kidney disease (CKD) affects approximately 1 in 20 adults and is often without symptoms until the advanced stages. For people at higher risk of CKD, such as those with diabetes and high blood pressure, NICE guidelines state that GPs should ensure they have both blood tests and urine tests annually.
The recently released National CKD audit found that on average only 54% of people with diabetes have the relevant urine tests, compared to 86% that have blood tests. In some other groups, including those with high blood pressure, it’s less than 30%.
Fiona Loud, Policy Director at the British Kidney Patient Association said “There are some really important findings from this audit – the huge variation in identifying risk of kidney disease in those with diabetes and the even greater variation in checking for CKD in those with high blood pressure. This is despite the fact that diabetes and high blood pressure are the commonest causes of kidney disease.
As patients we need primary care and rely on our doctors to look out for us; we hope that the audit will give further weight and encourage general practice to increase urine tests for those at risk.”
Further findings showed that whilst over 80% of those who have CKD had had a blood test in the previous year - only 31% had a repeat urine test. For people without diabetes, urine testing rates dropped to less than 15%. This is despite recommendations that effort should be focused on regular review. The report authors also urged GPs to review how they record the fact a patient has CKD on their systems as almost a third of confirmed CKD cases were not given the right coding and 1 in 10 people who were coded as having CKD did not have it.
The report compared GP practice results in England and Wales against NICE quality standards asking questions such as:
- Are people with risk factors being tested for CKD?
- Are people with CKD being correctly identified and given an appropriate code?
- And for people with CKD, are blood pressure targets being met, appropriate risk management being initiated, annual CKD reviews being performed and appropriate immunisations being given?
You can read the full report on the HQIP website (external link)
Data from the first ever national Patient Reported Experience survey (PREM) now available to the Clinical Directors
We’ve been working with the Transforming Participation in Chronic Kidney Disease programme on the first Patient Reported Experience Measure (PREM) survey and are delighted that the analysis of this data is now with the Clinical Directors of the 41 renal units that took part in the survey. The results have been made available to the Clinical Directors via a closed private forum on the UK Renal Registry. In March 2017, once the renal units have responded to their results, a full report will be published here as well as on the Think Kidneys website.
Paddy Tabor, Chief Executive of the British Kidney Patient Association said: “We are delighted with the response to this, our first ever national Patient Reported Experience Survey in England, with over 8,000 patients taking part. The experience of patients and their families are a key component of the quality of healthcare and we hope that this survey, and the feedback it provides, will lead to and support a wide range of local quality improvement initiatives and help increase the number of patients satisfied with their kidney care. A big thank you to everyone who completed a survey and to all the health professionals who supported this important initiative. We will be working closely with the Renal Registry in the coming months to both formally validate the survey questions and plan for improvements to this year’s survey, as we work to make this an annual event.”
On behalf of the British Kidney Patient Association and the UK Renal Registry, we would again like to offer our thanks again to all those who participated in this pilot of the PREM survey. We look forward to sharing the results with you later in the year.
Advice for kidney patients during the cold weather this week
Kidney disease affects more than 3 million people in the UK and cold weather, ice and snow can aggravate existing health problems, making people with long term conditions such as kidney disease more vulnerable to illnesses. With an Arctic front and snow forecast to hit the UK later this week, it is vital that kidney patients take extra care.
Even when people are managing their long-term condition and lead otherwise healthy lives, it is important that they continue to protect themselves. This is why we, along with the NHS and Renal Units throughout England are promoting some of the key actions patients can take to stay well during the winter months:
- Getting the flu vaccine (only 53.5% of those with chronic kidney disease had the flu vaccination last year).
- Seeking advice at the first sign of feeling unwell.
- Keeping warm.
- Ensuring their medicine cabinet is stocked up.
Nick Palmer, Head of Patient Support and Advocacy Services at the British Kidney Patient Association (BKPA), says: “Our advice to any kidney patients this week is to plan ahead if possible; if you are dialysing in a hospital or satellite unit there are likely to be problems with roads and transport.
If you need medicines it’s worth collecting them now rather than later in the week when the weather will be worse. It’s important to stay warm when outside or at home, to avoid colds and the flu. If you haven’t already, it’s also a good idea to speak to your GP or pharmacist about getting the flu vaccine, as only half of people with chronic kidney disease (53.5%) did so last year1”.
The national Stay Well This Winter campaign launched on 12 October and will run until March 2017, to help people who are most at risk of emergency admission to hospital to take actions that may help them to avoid hospitalisation.
Download a copy of the handy guide
The BKPA is disappointed that for a third year running we appear to have made little progress in improving tariff to improve patient-centred care. We are working with NHS Improvement and NHS England on the renal dialysis and transplant tariffs as stakeholders but this work is not at all complete. Indeed NHS Improvement’s own audit on the quality of data provided into costings returns makes it clear that most trusts (86% of them) are not supplying ‘compliant’ data. With regard to renal care, you have previously stated that “Tariffs for renal dialysis calculated using reference costs do not cover the cost of treatment.”
We welcomed the opportunity to comment on some draft costings in the summer of 2016 but we are now dismayed by the proposals, which represent a greater reduction than anticipated and appear to go against suggestions of innovation and encouragement for therapies such as home dialysis, which can offer greater quality of life, flexibility in treatment times and reduce the reliance on patient transport services. For us, the choice of all therapies for patients is a central plank of patient-centred care and it is not clear why the tariff for home haemodialysis and peritoneal dialysis is reduced further than anticipated relative to other treatment.
While we welcome the principle of stability for treatment costs the quality of kidney care cannot be maintained by the constant erosion of funding. Best practice tariffs for renal are generally reduced by an average of 4%. Every year since best practice tariffs have been in place there has been a reduction in tariff for dialysis services, as the diagram below shows. We would prefer that you retain the current tariff while accurate costs are established, rather than introduce the proposals outlined in your consultation.
We see that a 40% reduction in tariff for follow up multi professional outpatient clinics is proposed. Care for the patient with or approaching kidney failure is not simply dialysis - it may be transplantation or conservative care (active management for those who choose not to dialyse, with the UK as a world leader). It must be delivered regularly by a multi-professional team which looks after the individual. The team will work with the patient to share treatment decisions. Clinics may involve education, pharmacy, dietary, rehabilitation, psychological advice and other services. Multi-professional teams are at the heart of kidney care and any cost reductions should be proportionate. We do not support this proposal. The BKPA itself funds about 60 multi-professional staff in the NHS, which gives us a strong insight into the enormous value of good multi-professional support for kidney patients to maintain some quality of life.
Tariff figures 2014-2018
With a desperate shortage of organ donors, it’s now as important as ever to sign up as a potential donor.
Around 6,500 people are waiting for an organ transplant across the UK and sadly some will die before getting the transplant they need.
Most people say they support organ donation, but around 35% who want to be donors say they just ‘haven’t got round’ to joining the NHS Organ Donor Register.
As an organ donor you could save or transform up to nine lives.
We all have busy lives, but somehow we still find ourselves idling away time and put off doing things we really know we should do. One of those things is signing up as an organ donor.
We know many people don’t want to think about their own death. But patients waiting for a transplant depend on people of all ages thinking about whether they want to become a donor. Those couple of minutes you give to sign up as a donor could lead to you saving lives in the future.
Don’t leave signing up to someone else.
What are you waiting for? Sign up today at - www.organdonation.nhs.uk
A new partnership between the Royal Free Hospital and Deepmind has been announced today. Professor Donal J O’Donoghue, Chair of the British Kidney Patient Association and President of the Renal Association, welcomed the news "We know that more than 1000 people a month are dying of acute kidney injury in our hospitals. Kidney disease is silent. It’s often a complication of another condition but is frequently overlooked, particularly in the vulnerable and elderly where it is most deadly. Streams, the Royal Free – DeepMind Health partnership announced today will transform the way clinicians can identify kidney risk earlier, enabling prompt personalised interventions and the reliable delivery of evidence based care to prevent these unnecessary deaths.”
Announcement document download here
Think Kidneys – KQuIP Calling All Renal Staff!
KQuIP provides a major opportunity for renal teams working with patients to improve the quality of care and to help deliver the ambitions agreed by the whole kidney community in the publication Kidney Health: Delivering Excellence.
The KQuIP Education Workstream has created an online survey to gather baseline information about quality improvement education to help inform and guide the workstream’s initial areas of work. We would like as many renal team staff to complete the brief survey as possible – it has only 6 questions and will take just a couple of minutes to complete
The survey is open until 31 December 2016, and will help us assess current knowledge levels of Quality Improvement (QI) and future training and education needs for everyone.
Please help us and complete the survey by clicking on this link:
Please share this link with your renal team, colleagues and networks so we can get as many healthcare professionals as possible to complete the survey which will help us plan our work so that it meets your needs.
For more information on KQuIP please visit the KQuIP website on: https://www.thinkkidneys.nhs.uk/kquip/
Kidney Quality Improvement Partnership (KQuIP) - Working together to develop, support and share improvement in kidney services to improve people's health and add value
The BKPA is delighted to be working with Addenbrookes and Lister hospitals to bring home dialysis education and awareness to patients. During the third week of November camper vans featuring Peritoneal as well as Home Haemodialysis are coming to dialysis units in the East of England. We believe that people with kidney failure should be able to choose the dialysis treatment that suits them. These roadshows are a great opportunity to learn more about home therapies, and explore all the options with experts who will be on hand to provide support and advice to staff and patients’. The roadshows follow directly on from this year’s Self-Care week, with its theme of ‘understanding self-care for life’.
All are welcome – please just drop in.
As we all know, winter conditions can be serious for those living with long-term conditions such as kidney disease. The cold, damp weather, ice, snow and high winds can aggravate an existing health problem and make people more vulnerable to illnesses that are more common in winter.
Even when people are managing their long-term condition and lead otherwise healthy lives, it is important that they continue to protect themselves. This is why we, along with the NHS and Renal Units throughout England are promoting some of the key actions patients can take to stay well during the winter months:
- Getting the flu vaccine (only 53.5% of those with chronic kidney disease had the flu vaccination last year).
- Seeking advice at the first sign of feeling unwell.
- Keeping warm.
- Ensuring their medicine cabinet is stocked up.
The national Stay Well This Winter campaign launched on 12 October and will run until March 2017,
to help people who are most at risk of emergency admission to hospital to take actions that may help them to avoid hospitalisation.
Download a copy of the handy guide here >
Download a copy of the poster here >
For more information and advice visit nhs.uk/staywell >
The first national project for Patient Reported Experience Measures rolled out successfully over the summer in English kidney units. 8,000 kidney patient responded to the survey with comments on their experiences with their care provision, giving the survey.
During the summer English kidney units across the UK took part in the first kidney specialty-wide PREM project. Results are now being analysed by the UK Renal Registry and will be reported to unit teams and their patients in the next few weeks.
The PREM is a survey comprising 43 questions and asks patients about their experience of living with kidney disease and the care they receive from their healthcare teams. See the full set of responses here
Staff at Newcastle upon Tyne NHS Hospitals Foundation Trust’s kidney unit at the Freeman Hospital describe in a new case study how they implemented the survey. They describe the challenges they faced, what they have learned and what they will do differently next time. The team engaged everyone in the unit and enlisted the help of patient volunteers, without whom they would not have reached as many patients as they did. Once the results are analysed the team will use the data to help create a picture of their patients’ experiences and from this they will be able to identify areas requiring change or development. You can access the case study here.
The PREM is a collaboration between the UK Renal Registry and the British Kidney Patient Association and was developed and managed by the Think Kidneys Transforming Participation in CKD team which comprises patients, carers and clinicians.
infoKID – information for parents and carers on children’s kidney conditions.
In 2014 BKPA came together with the British Association for Paediatric Nephrology and the Royal College of Paediatrics and Child Health, to create an information resource for parents and carers of children with a kidney condition. infoKID.org.uk is an online resource providing information on almost 50 topics relating to kidney conditions, treatment and tests and diagnosis.
In order to evaluate the resource and make any improvements requested, a 10-minute survey has been created for users to provide feedback on the website, which can be completed here: https://www.surveymonkey.co.uk/r/infokid
Forty years ago Mrs Elizabeth Ward OBE, the mother of a young kidney patient, founded the British Kidney Patient Association. Since then, no charity has done more to improve services, care and support for kidney patients.
On October 11th, this remarkable lady celebrated her ninetieth birthday. We would like to note our message of congratulations and thanks on this special day.
It is estimated that the British Kidney Patient Association has provided funding of around 30 million pounds in just the last ten years to hospitals and the health services in the UK, for example providing seed funding for posts such as counsellors, dieticians, young adult workers and social workers who are vital in supporting kidney patients. In 2014 the charity was funding 60 health professionals across the UK to improve access to multi-disciplinary teams.
In addition the charity makes many grants to individual patients to help them and their families cope with kidney disease and its effects.
Elizabeth Ward and the British Kidney Patient Association were behind many ground breaking initiatives including the first organ donor card and the establishment of the first holiday facilities in the UK or Europe for people on dialysis.
Paddy Tabor, CEO said 'Over the years, Elizabeth Ward has worked tirelessly for the benefit of people with kidney disease and their families. In her name, we are proud to continue this vital work.’
Friday 30th September see the launch of the first ever pan-European PKD (Polycystic Kidney Disease) Awareness & Fundraising Campaign – 'Give PKD the Bump' The logo for the campaign is a symbolic fist indicating the size of a normal healthy kidney that all patients hope their kidneys will return to.
As part of the campaign Friday will also see the launch of the #BumpPKD Challenge - asking friends, family and supporters to do a ‘fist bump’ and then challenge their family, friends, colleagues etc. via Facebook to do a fist bump to 'Give PKD the Bump’.
Visit the campaign website at www.bumppkd.com, which will also include a 'social wall’ - which gathers and displays all the FB, Twitter, Instagram etc. posts around the world with the hashtag '#BumpPKD’.
The BKPA believes that earlier detection and appropriate treatment of Chronic Kidney Disease is vital both to avoid developing later complications and also to avoid Acute Kidney Injury. On World Heart Day we are supporting the development of a cardiovascular prevention pathway with Public Health England to incorporate hypertension, AF, high cholesterol, diabetes, pre-diabetes and chronic kidney disease.
See the information booklet here >
Kidney Research UK have launched their annual patient survey into research priorities. BKPA are passionate about patients views being central to any decisions that are taken, so please do take a few minutes and make your views count.
This is the link to our survey https://www.surveymonkey.co.uk/r/kidneypatientsurvey
As you may know, we have heard the wonderful news that the long-awaited 500th donation has now taken place. Today, 21 September, The charity Give a Kidney, in partnership with NHS Blood and Transplant, are officially announcing the 500th non-directed living kidney donation in the UK.
This means that more than 500 people have helped save the life of stranger by becoming a living kidney donor, and to mark this milestone NHS Blood and Transplant and partner charities like BKPA are now calling for more people to consider saving lives by donating to a stranger. Altruistic donors are especially valuable because they can generate transplant chains, where up to three kidney transplants are triggered thanks to the generosity of one stranger.
Fiona Loud, Policy Director at the British Kidney Patient Association, said: “The generosity of living donors is absolutely fantastic; we and the patients we support are very grateful for the gift of life which organ donation gives. The altruistic programme has transformed lives by giving more kidney patients the chance of a transplant and we are delighted that this important milestone has been reached. We hope it will continue to encourage more living donors and more kidney transplants.”
- For information on becoming an altruistic kidney donor, contact your local kidney transplant centre. Information and details here https://www.organdonation.nhs.uk/about-donation/living-donation/
- To register your commitment to donating your organs in death, visit www.organdonation.nhs.uk or call 0300 123 23 23.
- Share your decision with your friends using #YesIDonate
Read the full press release download here >
The Department of Health recently asked how they can improve support for carers. The BKPA is very aware of the vital role many carers play in supporting their loved ones through the challenges of kidney failure and would like to thank those who contributed to our response, which is here >
The recent annual activity report from NHSBT has highlighted the big challenge ahead to achieve the target numbers for live donor transplants by 2020. An excellent article by Kirit Modi reviews the numbers and calls for more to be done. Read the full article below.
Why are live donor transplants going down?
There are two ways in which organs can be donated; one is donation after death and the other is live donation. Live donations can be made by close family (including partners), friends as well as by strangers. However, live donations can only be made for certain organs and mostly involve donation of a kidney. Clearly there is a thorough and rigorous process to go through before anyone can make a live donation and not everyone wishing to make such a donation is able to do so. The selling of organs is, of course, both illegal and immoral.
The number of live transplants, following a live donation, has gone down for two consecutive years in the UK. The actual figures published by NHS Blood and Transplant (NHSBT) recently are worrying. The number of these transplants in 2015/16 was 1075 compared to the target of 1223; i.e. a shortfall of 148 transplants which means there is a gap of 12%. The impact of this downward trend on the lives of patients waiting for a transplant is significant. This has happened despite the national strategy (Living Donor Kidney Transplantation 2020) being implemented by NHSBT and approved by the four UK governments since 2014.
Live kidney transplants make a significant contribution to the overall number of kidney transplants. 2015/16 figures show that nearly a third of the adult kidney transplants were live transplants. This means we need to make progress on both live transplants and transplants after death to reduce the time kidney patients have to wait for a transplant.
The reasons for the number going down are complex and there will be a variety of views on this from different perspectives. I have set out below my personal views and highlighted reasons as well as actions needed to address this challenge.
Firstly, live transplants are not given sufficient priority by NHSBT compared to transplants after death. A recent example of this is that the national Organ Donation Week Campaign, starting today for a week, does not include live donations. There may be administrative reasons for this but, from a patient perspective, this is both unhelpful and unacceptable.
Secondly, there is significant variation in the number of live transplants taking place in the transplant centres across the UK. While some variation is inevitable and can be explained, there seems to be unexplained variation. One measure is the proportion of live kidney transplants compared to all kidney transplants (both live and after death). The highest proportion of adult live transplants in 2015/16 took place at Belfast (57%), Coventry (53%) and Newcastle (41%) while the lowest proportions were at Nottingham (20%) and North West London (21%). Each transplant centre covers a region and potential live donors are first seen by all hospitals with a renal unit. Greater transparency of the reasons for these variations should be provided both by all hospitals with a renal unit, the transplant centres and NHSBT. In addition, there is no evidence that NHSBT at present sufficiently challenges these unexplained variations.
Thirdly, the key staff who are responsible for live transplants in hospital are Organ Transplant Coordinators (OTCs) who are employed by the hospital trusts with renal units. This means that responsibility for live transplants largely rests at a local level. This has resulted in the number of OTCs employed by some hospitals being less than the recommended number; uncoordinated training for OTCs and, I believe, difficulties in replacing OTCs when they move jobs or are away for any reason. There is a strong case for NHSBT to directly employ OTCs. This already takes place for donations after death whereby Specialist Nurses for Organ Donation are directly employed by NHSBT.
Finally, patients waiting for a transplant are not provided with sufficient renal unit or transplant centre specific information to make informed choices about how its local provision compares with others. The patient voice can be powerful both at a local and national level so long as patients are empowered with the appropriate information in a user friendly format and encouraged to ask
questions. This is the responsibility of both kidney patient charities and NHSBT.
In conclusion, we are currently not in a good position in relation to live donor transplants. The national strategy until 2020 was approved by the four UK governments and NHSBT but its implementation is unsatisfactory. Progress over the last two years has been poor and it is unlikely that we will reach the 2020 target of 1608 live transplants which is an increase of 49% (523 transplants) on the current figure. NHSBT and the four governments have time and opportunity to address this now so that we do not fail to meet the target set. I would also respectfully urge close families and friends of those waiting for kidney transplant, particularly those from Black, Asian and Minority Ethnic (BAME) background, to consider becoming a live donor if at all possible. It is also important to appreciate that many patients understandably find it very difficult to raise this sensitive issue with them.
Kirit Modi Kidney transplant recipient
Previous Chairman of the National Kidney Federation (NKF) and previous cochair of the National BAME Transplant Alliance (NBTA)
This article is written in a personal capacity.
5 September 2016
The British Kidney Patient Association welcomes the latest news from NHS Blood and Transplant that transplants are increasing, but is concerned that too many patients still wait too long for a kidney transplant. Download the full Activity Report here >
Although the number of kidney transplants in the 2015/2016 period is higher than that for the 2005/2006 period this increase has barely been sufficient to keep pace with demand over the same period. The long waiting times mean that people get sicker and are suspended from the active waiting list. The number of suspended patients is now the highest it has ever been and therefore the total of those waiting is the same as it was 10 years ago. Sadly, nearly every day a kidney patient on the waiting list will die.
The organ donation consent rate has barely changed in recent years, and we will not see the revolution in transplantation that we seek until that happens. That is why we are asking everybody to join the organ donor register and have the donation conversation to tell their loved one what their donation decision is.
The numbers with kidney failure continue to grow every year, with diabetes, high blood pressure and infections being leading causes. There are also genetic conditions which are passed down through families. Kidney failure is common in Black, Asian and Minority ethnic communities, with a high incidence of diabetes, so the need for that donation conversation is especially important.
We recognise the generosity of organ donors and their families and the hard work of transplant teams, which has resulted in improved transplant activity figures compared with the decline shown in 2015. We are nevertheless also concerned at the high level of variability of waiting times between transplant units around the country and want to see this improve.
Life on dialysis can be challenging, with very difficult dietary and fluid restrictions and a heavy symptom burden including sleeplessness, anaemia, and itching plus the mental challenges of living with an incurable condition. A kidney transplant can relieve much of that burden and kidney patients never forget their donors and the gift of life that organ donation means.
Next week is organ donation week and we would urge everyone to have the Donation Conversation.
(1) The British Kidney Patient Association is the leading charity which for 40 years has supported quality of life for kidney patients and their families through direct grants, advocacy, counselling and NHS posts.
(2) Transplant Waiting List – in 2007 there were 7970 on the waiting list (6217 active and 1753 suspended) while in 2016 there are 8115 (5011 active and 3104 suspended). People are suspended from the list when they are unwell or out of the country.
(3) Waiting times in units - The median waiting time at each unit for a kidney transplant for patients registered between 2009 and 2015 varied between 478 and days and 1542 days
The TP-CKD programme which is supporting and helping patients with kidney problems to develop the knowledge, skills and confidence they need to be involved in actively managing their own health care, has reached another key milestone. The results from patients in the first 10 renal units to take part are now available via Patient View screens.
To read the full announcement from the TP-CKD team > click here
For more information on the programme visit the Think Kidneys Transforming Participation Website https://www.thinkkidneys.nhs.uk/ckd/
The new resaerch project will see 100 patients with donor kidneys will use the MyTherapy App over 6 months to manage their post-transplant treatment plan. Headed by Prof Dr Klemens Budde from Charité University, the project will be looking at the positive effects of MyTherapy on adherence during post-transplant care.
The app (iOS und Android) will act as a support tool for the patients for adhering to their medication regimes, home measurements (e.g. blood pressure) as well as other treatment-related activities. The Charité researchers will evaluate the app’s effectiveness in comparison to a control group of the same size.
According to Prof Budde “every 1 in 6 kidneys is rejected due to poor adherence”. Prof Budde continues that “based on the positive study results from MyTherapy, we believe this app will help improve post-transplant outcomes”. The results of the study will be presented at an upcoming Nephrology Conference.
MyTherapy app reminds patients of the medications they need to take and to get active by tracking vitals and symptoms. MyTherapy’s built-in health journal summarises medication and health information so individuals can oversee their health progress. Patients can share them with their healthcare provider, helping them better understand the individual’s needs or let the family be their safety net, in case people do forget a dose. MyTherapy is available free of charge from the iTunes App Store and on Google Play.
For more information please visit: www.mytherapyapp.com
Please join our Thunderclap today and along with thousands of others, send out a loud message to ask people to share their organ donation wishes with their families.
You may be asking yourself, what is a Thunderclap? It is a website that you go onto and register, and where you will find our message “Have the #DonationConversation – 1 organ donor can transform the lives of up to 9 people” The Thunderclap website will send out via your Twitter and Facebook all on the same day and all at exactly the same time – in order to achieve maximum impact, hence the name Thunderclap!
Thunderclap will only do this once on your behalf and will not spam your contacts with junk messages.
Click on https://www.thunderclap.it/projects/44719-donationconversation and choose either – support with Twitter or Support with Facebook or both. Then add your name to the Thunderclap and on Friday 29 July at 12 noon, everyone that has signed up will automatically have the same message posted on their Facebook and/or Twitter to ask people to have the donation conversation.
To find out more about the national campaign click here
With your help on Friday 29 July, we can all encourage the public to have the DonationConversation
Thank you for your support
On Monday 18th July a national public campaign is launching to raise awareness of kidneys – what they do and why we need to look after them. The campaign is simply called ‘Think Kidneys’ because that is what we are asking people to do. The campaign is run by the Think Kidneys programme (Hosted by the Renal Registry).
The main messages for the campaign are those which appear in the infographic which is on the Think Kidneys website and in the posters. The set of posters are being sent out to GP practices and pharmacies for display in public areas. The posters are being endorsed by the Royal Pharmaceutical Society. A set of the posters is being sent to each renal unit clinical director
Tune in Dr Sarah Jarvis’ health half hour on the Jeremy Vine show on Radio 2 on Monday 18 July at 1pm.
To see the full campaign press release click here.
We will keep you updated as the week goes on.
The Department of Health has recognised that it’s time to create a new strategy for carers, who look after family members, friends, neighbours with their long-term health needs. They say “Carers freely give their time and energy to support friends or family members and many rightly take pride in providing essential support for those close to them. Caring for others should not be to the detriment of the carer’s own health and wellbeing and carers can receive support in a number of ways – including from social services, the NHS, or the benefit system.”
It’s a simple question but it can have a lot of different answers – how can we improve support for carers?
If you would like to give your comments directly, here is the link:
Congratulations from everyone at BKPA, to Newcastle and Gateshead for winning the bid to host the World Transplant Games in 2019.
The BKPA knows how important it is for you and your family to have a break, which is why we support patients with grants to do so, and also work in partnership and fund the Freedom dialysis holiday swap service. We have had lots of questions about what the impact of the referendum vote to leave the European Union will mean; right now, nothing has changed. The European Health Insurance Card (EHIC) card allows you to access state provided healthcare in all European Economic Area (EEA) countries. The EHIC is available free of charge at the following web site or phone 0300 3301350.
EHIC cards are still valid, and will continue to be as normal. Within the European Economic Area (EEA) the EHIC will entitle patients to renal dialysis for free or at a reduced cost, but patients will as ever need to make arrangements directly with the provider in advance of their visit. UK residents are also entitled to reciprocal treatment for dialysis in Australia and New Zealand. The NHS in England has in place this helpful guidance which has not changed https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2013/05/dafb-faqs.pdf
The BKPA will be representing the interests of kidney patients during the period of change and we hope that reciprocal arrangements can be set up as they already do in some parts of the world.
Doctors are planning to urge the Government to save lives by introducing an “opt out” system of organ do-nation in Britain. The British Medical Association says the UK should follow in the footsteps of Wales where people automatically become donors after their death unless they object beforehand – a move which has saved dozens of lives since it was introduced six months ago. Currently three people on the waiting list die every day in the UK.
The pilot report from the National CKD Audit has revealed that only 50% of patients with Chronic Kidney Disease (CKD) are being appropriately coded. Results from the pilot phase (June-December 2014) is consistent with previous studies suggesting that CKD coding is variable in GP practices. Although most practices test a high proportion of patients at risk of CKD, specifically those with diabetes and hypertension, on average only half of patients with CKD identifiable on blood tests are being appropriately coded.
Fiona Loud, Policy Director at the British Kidney Patient Association said, "It is estimated that Chronic Kidney Disease affects up to 1 in 10 in the UK , but worryingly one million people have kidney disease without knowing it. Early diagnosis and treatment can help slow down any further damage to the kidneys, further cardiovascular damage and reduce the risk of acute kidney injury (a sudden deterioration in kidney function).
For a minority, CKD can lead to kidney failure which requires treatment by dialysis or a kidney transplant. Timely preparation and management for these treatments improves outcomes".
National Patient Experience Survey (PREM) to launch June 2016 – Give us your views and help improve kidney services for everyone
The British Kidney Patient Association has teamed up with the UK Renal Registry and NHS England to launch the first ever national survey of patient experience, the PREMs survey. The intention of this national patient survey is to give people the chance to have a say about their care, and enable renal units to improve the services they provide in line with patients’ needs and expectations. The surveys are completely anonymous. Your name will not appear anywhere on the survey.
To see the full survey questionnaire click here
A survey designed with Patients
Patient representatives from the UK Renal Registry (UKRR) Patient Council, the National Kidney Federation and the BKPA have been involved in the work to develop the survey and your responses to the survey will provide valuable information about your experience of the care that you receive. Your views matter. We want to find out what you think works well with your care and what doesn't work so well.
Help us improve kidney services for everyone
By completing the survey you can help shape the services your kidney unit provides and that you are part of, as well as helping us build an overall picture of kidney services in the UK. Your renal team will give you feedback on their results so that you know that by taking part you are making a difference, and the UK Renal Registry and the BKPA will use the information to create an annual report, which will be published.
The PREMs survey will arrive in units on the 6th June 2016, and allow patients to report how their experience has been in areas such as communication and support from members of the renal team, decisions, privacy and dignity, and the environment. The plan is that it becomes an annual survey of patients’ views.
Paddy Tabor, Chief Executive of the BKPA said “The British Kidney Patient Association are delighted to be partnering with the UK Renal Registry and NHS England in this extremely important work that will enable patients’ views to sit at the very heart of service improvement and enable patients truly to become partners in their own care.
BKPA will be working hard with renal units, the Renal Registry and policy makers to use the output of this survey to improve quality of life for kidney patients, but we really need your support to spread the word to patients that their voice matters. Together we can deliver a powerful message to policy makers and local professionals on the importance of patients’ views."
To see a copy of the PREM Poster going up in Units click here
To see the leaflet designed for patients click here
We are very pleased indeed to announce today that much of our appeal against NICE’s (the National Institute for Health and Care Excellence) decision to restrict availability of immunosuppressant drugs has been upheld on the basis that it was not clear whether the guidance applied to acute or chronic rejection, or further transplants. NICE’s multiple technology appraisal had decided not to recommend 6 out of the 9 currently used drugs used to prevent a kidney transplant from rejection. As a result of our and others appeals this decision will now NOT be going ahead. We are especially pleased that our significant contribution meant that 5 of our appeal points were accepted (4 fully and 1 in part).
The BKPA has been working very hard since August 2015 to demonstrate to NICE that its intention not to recommend the drugs is harmful and would have a major impact on kidney patients. We submitted 2 written appeals, and our patient representatives appeared at both evidence sessions. We briefed a number of MPs and received inadequate answers to the parliamentary questions we raised (link to PQ document). However the matter reached oral appeal on 30th March and this was the oral evidence that we gave at the appeal (link to appeal document). We worked with patient representatives and our clinical colleagues in order to achieve this important result. From the charity, Policy Director Fiona Loud, Head of Patient Support Services Nick Palmer and Patient Advisory Group member Dr Patrizia Hodge gave the verbal appeal. Our successful appeal points were based on the lack of alternatives for patients with rejection, the additional costs of dialysis for more failed transplants and the reduced quality of life and mortality for people who lost their transplants. We were fully successful on points 2.1, 2.3, 2.4, 2.5 in the appeal and partially successful on point 2.11. The full text is here (link to appeal response letter) The complete judgement will be available on the NICE website shortly.
By working closely with patients, colleagues and clinicians the kidney community has once again shown its strength and unity in overturning a decision which was not in patients' interests. Thank you from all at the BKPA, working every day to improve quality of life for all kidney patients.
Lord Warner’s report on specialised commissioning has been published, making important recommendations for the future of specialised services.
Those interested in kidney matters may recall that BKPA led a successful campaign not to remove dialysis from the list of specialised services in 2014/15.
The report, to which the BKPA submitted evidence, recommends an approach to the management of specialised services founded on the principles of national standards, locally delivered.
It recommends national accountability for all specialised services, with the opportunity for managing services at a regional or CCG level. While the BKPA does not support CCG commissioning of dialysis services, we see that regional collaboration is an option which merits development. We welcome the report, which can be found here.
The British Kidney Patient Association believes that any future commissioning approach must include:
- National standards and pricing for kidney care
- Robust evaluation methodology, measurement and reporting procedures, so that quality, experience and outcomes of care can be seen and acted upon in a timely manner
- A means to enforce standards in order to ensure adherence
- Clear accountability for everyone along the care pathway, so that patients know who is responsible for their care
- Guaranteed access to all suitable choices and locations of care
- Demonstrable, achievable outcomes for patients
- Access to a skilled multidisciplinary workforce to care for patients’ medical, social and psychological needs
- The sharing of learning and good practice between networks.
We published this paper in the British Journal of Regional Medicine which summarises our position, which can be found here.
BKPA has chosen Mental Health Awareness week to announce the expansion of its patient counselling service in response to increased demand from patients and their families. Sharon Jemoth a fully qualified and BACP accredited counsellor joined the team on the 16th May and will be working with the current BKPA senior renal counsellor, Jacquie Fraser, to offer an even greater level of psychological and emotional support to patients and their loved ones across the UK.
Paddy Tabor, CEO said “We are delighted to welcome Sharon Jemoth to the BKPA as a Renal Counsellor. BKPA has always been passionate about ensuring that patients’ psychological and emotional wellbeing is prioritised in care services. We fund a considerable number of counsellors, psychologists as well as young adult workers in renal units across the UK and our own counselling services, which together with our patient support and advocacy service provides day to day practical help for Patients and their families, is particularly vital for areas where counselling support is limited.
Counselling allows a person to talk about their problems and feelings in a confidential and dependable environment, and we are keen to use mental health awareness week to draw attention to the need for greater support for patients. Anxiety and depression often combine with the physical symptoms and restrictions of kidney failure, to make life even more challenging and we have responded to the growing need and reduced availability of counselling support elsewhere by welcoming Sharon to the BKPA team".
The BKPA National Counselling Service was established five years ago to provide confidential help and support to patients and their families, especially from areas with limited renal counselling support available in their units, and now provides around 10 counselling sessions every week, with demand for the free service increasing as pressure on NHS resources continues to see patient demand outstrip available provision.
British Kidney Patient Association response to NHS England consultation on support for specialised commissioning decisions
The NHS in England is seeking a rational way in which to make decisions about which drugs or treatments it will fund. These are treatments for specialised conditions, such as kidney failure.
There has recently been a consultation on a proposed way to make those decisions. While the BKPA understands the need to have a consistent way for making decisions, we are concerned that treatments for rarer conditions may be disadvantaged by the proposals.
This was our response > here <
The acutely unwell patient with diabetes; thinking kidneys in primary and secondary care
Last month, I was delighted to introduce the first ever session at the Diabetes UK conference on Acute Kidney Injury (AKI) and Diabetes, initiated by the British Kidney Patient Association.
Following the launch of the first NICE AKI guidelines in 2013 (to which I was pleased to be able to contribute as a lay advisor), NHS England, under the guidance of Dr Fluck created a Think Kidneys Programme to address the avoidable harm arising from lack of awareness of AKI. One of my findings from those guidelines was that there was little or no information out there for people with or at risk of AKI.
In 2014, NICE brought out some updated CKD guidelines – again I was pleased to be a lay advisor to these, which contained a number of educational recommendations.
- Offer people with CKD education and information tailored to the severity and cause of CKD, the associated complications and the risk of progression.
- When developing information or education programmes, involve people with CKD in their development from the outset.
They also, for the first time, included a recommendation to warn people with CKD about the risk of AKI.
The latest figures from the UK Renal Registry show nearly 60,000 people with kidney failure are being treated with dialysis or transplantation, and for 27% of new patients the cause of their kidney failure was diabetes, up by 5% from 2009. Survival for people with diabetes and renal failure is lower than for others with renal failure.
The Think Kidneys programme is making excellent steps in both primary and secondary care to prevent AKI, especially in people who are particularly at risk such as those with CKD, diabetes and/or in care homes.
The BKPA is equally supportive of the programme, and has worked hard to produce the missing patient resources, for those who have had AKI (and don’t want to get it again!) and to help people at risk to protect their kidneys from AKI, and for those with CKD and whose kidneys have failed.
The 60,000 people I discussed are not however the only target for this programme – there are millions with CKD and millions with diabetes. It is caring for those and especially the acutely ill person that the education in the session was aimed at.
The speakers were:
Dr Richard Fluck, former National Clinical Director for Renal, kidney doctor at Derby Teaching Hospitals NHS Foundation Trust introduced the secondary care perspective. Richard’s slides can be accessed here.
Dr Daniel Lasserson, GP and Associate Professor and Senior Interface Physician Oxford University Hospitals NHS Foundation Trust gave a view from primary care. Dan’s slides are here.
The small but perfectly formed audience came from both areas and were clearly very committed to the topic.
We would like to thank Diabetes UK for enabling the session and the Think Kidneys team for supporting it, and of course Richard and Dan for their excellent talks.
Tonight - 7pm - Donor family meeting recipient
Tonight, The One Show will broadcast a film showing the first meeting of the family of 10-year-old deceased organ donor Evey Staley, and five year old heart recipient Scarlet Ungurs.
The families arranged the meeting and contacted The One Show themselves, after initial contact through the NHS. We were informed near the planned date of filming and have been seeking to influence the piece.
NHSBT have provided an interview through a Specialist Nurse in Organ Donation, plus statistics and background information. They will also be handling all post broadcast follow-up media requests.
There will be several transplant recipients including one from the BKPA in the audience, for a planned segment to further demonstrate how donation saves lives.
The British Kidney Patient Association is always appreciative of the hard work doctors, nurses and other healthcare professionals carry out day to day in support of kidney patients. Our understanding of the current 2 day strike (26th - 27th April 2016) is that it will be business as usual for most kidney patients. As dialysis is generally a nurse-run programme we have not been made aware of potential disruption in dialysis clinics. We understand that outpatient clinics and elective surgeries will be cancelled but that safe emergency care is being provided by the most senior doctors and that people who need hospital should go there. This helpful NHS information has been shared with those we support http://www.nhs.uk/strike/pages/strike.aspx.
We want to see a safe sustainable NHS which supports patients including those with a challenging long term condition like kidney failure. For the sake of them, we call on both sides to recommence talks now.
The BKPA co-signed this recent letter drawn up by National Voices (link here) and is sad to see the dispute continues.
The BKPA is delighted to announce that Rob Finnigan has joined the charity to provide patient support and advocacy in the North West. Rob will be joining an experienced team of advocacy officers who work for kidney patients to represent their interests and obtain the services they need Nick Palmer, Head of Patient Support and Advocacy Services said ‘we are really pleased to welcome Rob to the team and to be able to provide this much-needed service in the North West’.
The BKPA are proud to have been part of the team which has produced the UK’s first comprehensive renal research strategy, which launches today. The strategy, two years in development, outlines aims and recommendations to improve the health and welfare of kidney patients through impactful kidney research.
It has been developed under the umbrella of the UK Kidney Research Consortium – which is comprised of a broad association of key bodies including leading kidney charities and professional associations, NHS England and clinical research networks from the National Institute for Health Research, Scotland and Northern Ireland.
Paddy Tabor, Chief Executive of BKPA said: We hope this strategy will help us to better understand and tackle the causes of kidney disease for future prevention, to find new treatments and improve patient outcomes and quality of life. Not only are we aiming to drive greater investment and a collaborative approach, that will bring more benefits for kidney patients and their carers, but also firmly placing the patient voice and the multidisciplinary team, at the heart of the strategy to maximise outcomes that deliver better healthcare and prevention strategies.
BKPA welcomes the tribute being paid today to the tens of thousands of organ and tissue donors and their families, who have saved and transformed lives.
The national memorial is being unveiled today at the National Memorial Arboretum in Staffordshire, by The Duke of Gloucester and the BKPA will be there along with hundreds of families of organ donors and transplant recipients.
Paddy Tabor, Chief Executive of BKPA said, “the generosity of donors has transformed thousands of lives. It is wonderful to recognise their gifts of life and to join with the donor families who we know take great pride in knowing their loved ones have transformed the lives of others. We congratulate the Donor Family Network on their vision and efforts to make this lasting memorial a reality. We hope it will stand as a tribute to all donors, but also act as an inspiration to encourage others to join the organ donation register”
BKPA have joined forces with Pharmacists across Derbyshire to launch a public awareness campaign to educate and inform patients and carers about Acute Kidney Injury in the week which marks World Kidney Day.
Community Pharmacy Derbyshire together with BKPA are laying on special training sessions so Derbyshire’s pharmacists can advise carers and patients with kidney disease, particularly those at risk of Acute Kidney Injury. Informative leaflets are also being sent to more than 200 Derbyshire pharmacies to help with patient counselling.
For a copy of the leaflets can be downloaded here:
Acute kidney injury affects one in five people admitted to hospital and can be more deadly than a heart attack. The condition often has no early symptoms, so it can be difficult to spot.
Every year 60,000 people in the UK are treated for kidney failure and there are 40-45,000 premature deaths every year from chronic kidney disease.
Graham Archer, Chief Officer Community Pharmacy Derbyshire said: “Acute kidney injury is an insidious and life-threatening condition and community pharmacists are in a strong position to help those most at risk. We can develop understanding of the dangers and educate patients about what to do if they become acutely unwell.
“Pharmacists can also advise on the “Sick Day Guidance”, which could involve a temporary cessation of medicines where the risk of acute kidney injury is deemed to be high.”
Policy Director at British Kidney Patient Association, Fiona Loud, added: “We are delighted to be working in partnership with Derbyshire’s pharmacists in raising awareness of both kidney disease and acute kidney injury.
“Education is the key to prevention and we hope that the educational workshops and information leaflets will go a great way towards better informing the pharmacists and in turn the people of Derbyshire about this very serious, yet little known about condition.”
Problems can arise rapidly through Acute Kidney Injury, often in someone who is already at risk; someone with pre-existing kidney disease; aged 65+; congestive heart failure; diabetes; or liver disease.
Triggers may include:
- Sepsis or infections
- Hypovolaemia (dehydration, bleeding)
- Certain medicines (which can either damage the kidneys or impair renal function in some circumstances)
A possible sign of the injury is a low volume of urine being produced, although this is not always the case. However, someone with acute kidney injury can suddenly experience nausea and vomiting, confusion, low or high blood pressure, abdominal pain, slight backache or swelling.
World Kidney Day is on Thursday 10 March and the campaign will run from Monday 7 March.
This quality standard covers organisational factors in preventing and controlling healthcare-associated infections in secondary care settings. http://www.nice.org.uk/guidance/qs113
The BKPA submitted feedback to these standards as infections are so very common and harmful in people on dialysis or with a kidney transplant (view here) and is calling for improved identification, and rigorous monitoring to reduce avoidable mortality and harm.
The BKPA has appealed against a decision by the National Institute for Heath and Clinical Excellence not to recommend six immunosuppressant drugs used to prevent rejection of kidney transplants for future patients. Despite representations from the charity at two previous stages, NICE has stated that it will only recommend basiliximab, immediate release tacrolimus and mycophenolate mofetil to prevent rejection. We believe that that the impact of this recommendation has not been fully considered by NICE and have asked them to reconsider the wording of the technology appraisal. We estimate that the appraisal could affect 20-30% of patients (between 475-730 patients a year according to the latest figures from NHS Blood and Transplant), who are unable to tolerate the recommended drugs. Patients can remain on their current treatments until they or their clinicians decide to change them. The affected drugs are anti-human thymocyte (ATG) immunoglobulin, prolonged-release tacrolimus, mycophenolate sodium, sirolimus, everolimus and belatacept. The older drugs azathioprine, cyclosporin and prednisolone are not affected by this ruling.
For further details, and to see more about why we are so concerned, see our appeal documents for adults and children.
For the final determination from NICE see here https://www.nice.org.uk/guidance/GID-TAG348/documents/final-appraisal-determination-document.
The BKPA request for an oral appeal has been accepted and a hearing is expected in March.
Nephrotic Syndrome Patient Information Day, 16th March 2016.
Book your free place today
The Kidney Patient Advocacy Service started by the National Kidney Federation (NKF) fourteen years ago and run as a partnership between the British Kidney Patient Association and the National Kidney Federation since 2012, is being brought under the sole management of the British Kidney Patient Association. This is part of a significant move designed to maintain the service, secure its long term future and as part of a planned approach to expand and extend the service it provides for patients and their families.
In the immediate future, kidney patients, their families and all the other individuals and organisations that engage with the service, will not see any change to the service, as both charities stress the importance for a smooth transition that ensures there is minimal disruption to the quality of service offered to patients across the UK.
The service will be wholly delivered by the British Kidney Patient Association from the 1st January 2016 with exactly the same Advocacy Officers who currently provide the service, covering the same catchment areas they have supported over the last 4 years.
Paddy Tabor MVO, CEO BKPA said
“The Advocacy Service is a major source of help and support for thousands of kidney patients and their families right across the UK. We are delighted that it will now form a stronger part of the range of patient support services provided by the British Kidney Patient Association. Patients will in the short term see no change to a service which will continue to operate as it has for the last four years, empowering and supporting patients to make a real difference in their lives. However, BKPA have firm plans to both extend and improve the service in the future and we very much look forward to working with patients and the Advocacy Officers to develop an even better service”.
Nicholas Palmer, Head of Patient Support Services, BKPA said
“Together with my fellow advocacy colleagues I am tremendously privileged to be continuing my role leading this highly respected service on behalf of the BKPA for patients and carers across the UK. The service developed by the foresight and dedication of the NKF will now have the opportunity sustain its unique patient facing offer, improve further, and embed with the well-established grants and counselling resource provided by the BKPA, whilst maintaining the continuity of current working arrangements with the NKF Helpline. Advice, assistance, representation and empowerment will continue to run at the heart of the service to improve the care and quality of life for all patients no matter what stage of Chronic Kidney Disease.”
Timothy Statham OBE, CEO NKF said
"The National Kidney Federation (NKF) is extremely pleased to have reached this agreement with the British Kidney Patient Association as apart from securing the future of the Advocacy service for patients, it releases resource to the NKF that will enable the Federation to further expand and develop its other vital services to kidney patients, namely the NKF National Kidney Patient Helpline, the NKF range of 200 medical information leaflets, the NKF patient magazine “Kidney Life”, the NKF annual patient conference, and the NKF programme of campaigning at national, local and parliamentary levels."
To contact the two Charities:
British Kidney Patient Association - 01420 541424
National Kidney Federation Helpline - 0845 6010209
More than 500 families in the UK have said no to organ donation taking place since 1 April 2010 despite knowing or being informed their relative was on the NHS Organ Donor Register and wanted to donate. These family refusals have resulted in an estimated 1,200 people missing out on a potentially life-saving transplant.
NHS Blood and Transplant has released the figures to draw attention to the fact that family refusals mean that people either wait longer for a transplant or die on the transplant list. There are currently 6,578* people waiting for an organ transplant across the UK. When a family says no to donating, someone waiting for a transplant may miss out on their only opportunity for a transplant. Around 1,000 people die in need of a transplant across the UK each year.
Although registering a decision to donate on the NHS Organ Donor Register is a legally valid decision to donate your organs, in practice if your family strongly feel that they cannot support donation, despite staff answering their questions and concerns, donation doesn’t go ahead. That is why it’s vital to tell your family that you want to be a donor and to register your decision on the NHS Organ Donor Register.
Some families refuse to support a relative’s decision to be an organ donor in spite of the fact that the majority of people find the idea of someone overriding a decision to donate unacceptable. 73% of respondents to a survey carried out by NHS Blood and Transplant said they thought your next of kin shouldn’t be able to overrule your decision to donate after you have died, whereas only 11% thought it was acceptable to do so.
The organisation, which is responsible for the NHS Organ Donor Register and for matching and allocating donor organs, is now exploring whether there are further steps it could take when approaching families to ensure more potential donors’ decisions are honoured by their relatives. This includes making clear to families that consent or authorisation has already been provided by the individual themselves.
The relationship hospital staff build up with families at this time is very important, particularly given that the family members of potential donors provide a lot of important information about their relative’s medical, travel and behavioural history before donation takes place.
NHS Blood and Transplant is looking at ways to reduce the number of families who feel unable to support their relative’s decision to be a donor. Ideas being explored include:
- providing families with a leaflet that explains that consent (or authorisation in Scotland) rests with the person who has died and not the family left behind. These leaflets have been produced by the Human Tissue Authority for Wales, Northern Ireland and England.
- continuing to ask a potential donor’s family to help assess the risk of their relative donating organs (for example by providing information about their loved one’s medical and travel history), but not actually asking the next of kin to confirm consent or authorisation. Consent or authorisation from the next of kin is not required in law if someone had registered a decision to donate on the NHS Organ Donor Register, if they had expressed a decision in life to donate or if their consent can be deemed in Wales. The current way of approaching families, and paperwork NHS Blood and Transplant asks families to complete, may be adding to a family’s confusion at a stressful time and leading them to think they need to make a decision themselves.
- asking families to sign a document confirming their reasons for overriding their relative’s decision in the hope this might help a family to discuss and consider their relative’s decision and hopefully honour it. In Scotland families are already required to complete a retraction form to record why they overturned a relative’s decision to donate. A similar form could be rolled out elsewhere across the UK.
Sally Johnson, Director of Organ Donation and Transplantation at NHS Blood and Transplant, said: “We understand that families are approached about donation at a very challenging time and that it can come as a surprise to find out a relative had made a decision to donate. This can make it difficult for families to support donation going ahead and their relative saving lives.
“We want to draw attention to the fact that while most families approached about donation support their relative’s decision to donate as recorded on the Organ Donor Register, a number of families each year override a previously made donation decision. We hope that by raising this issue we will prompt more families to talk about donation and reduce the number of families overriding their relative’s decision to donate.
"Isn’t it important that the dying wishes of as many people as possible are honoured by their families so more lives can be saved and transformed through transplantation? We know that donor families take enormous pride from knowing that their relative helped others. We also hear that some families have gone on to regret overriding a relative’s decision to donate.
“We think our proposed changes would make the existing legal situation clearer to families and hopefully help them support their relative’s decision. But I urge you to act too if you want to be a donor. Register a decision to donate on the NHS Organ Donor Register and talk to those closest to you about donation. The more we all talk about organ donation, the less ambiguity and room for misunderstanding there will be. So please talk to your relatives and tell them that should the time come, you want them to support your decision to save lives after your death.”
To sign up to the NHS Organ Donor Register, visit www.organdonation.nhs.uk or call 0300 123 23 23.
Out of hours contact 0117 969 2444
*UK Active transplant waiting list as of 7th January 2016.
NHS Blood and Transplant is currently exploring how it can reduce family overrides, as across the UK the number of people that donated organs fell for the first time in 11 years in 2014/15. Each year, only around 5,000 of the half a million people who die across the UK die in circumstances where they are able to donate their organs. In 2014/15, 1,282 people donated organs after their deaths, resulting in 3,341 deceased donor organ transplants. It is important that the organisation continues to work with the rest of the NHS and families to increase donation so more lives can be saved through transplantation.
The following legislation regulates organ donation across the UK:
England and Northern Ireland: Human Tissue Act 2004
At the heart of the law is the principle that the decision to use your organs for transplantation rests first and foremost with you. If your decision to donate, or not donate, is registered on the NHS Organ Donor Register, then as long as no one forced you to make the decision, you were aware of your actions and had the information you needed, your decision is legally valid.
Wales – Human Transplantation (Wales) Act 2013
At the heart of the law is the principle that the decision to use your organs for transplantation rests first and foremost with you. Unless you have registered or expressed a decision not to donate your organs after your death, you will be regarded as having no objection to donation. Your consent will be deemed to have been given unless you fall into one of the exemptions or if your family and friends can show that you did not want to be a donor. If you have registered a decision to donate, there is no legal right for your family to override your consent; however families are still involved in discussions about organ donation.
Scotland - Human Tissue (Scotland) Act 2006
Any adult, or child aged 12 and over, who is able to make their own decisions can give authorisation for their organs or tissue to be donated. If you want to donate your organs or tissue after you die, you can add your name to the NHS Organ Donor Register. Or you can let someone close to you know your decision – simply telling someone counts as a form of authorisation under the Act.
Survey of 2,072 UK adults carried out by Populus on behalf of NHS Blood and Transplant. People were asked: Do you think that after you’ve died your next of kin should be able to overrule your decision to be an organ donor.
218 (11%) responded yes, 1,519 (73%) responded no and 335 (16%) responded I don’t know.
About NHS Blood and Transplant and the NHS Organ Donor Register
- NHS Blood and Transplant (NHSBT) is a joint England and Wales Special Health Authority. Its remit includes the provision of a reliable, efficient supply of blood and associated services to the NHS in England and North Wales. It is also the organ donor organisation for the whole of the UK and is responsible for matching and allocating donated organs.
- More than 22 million people in the UK have already signed onto the NHS Organ Donor Register. These people have joined the Register to record their decision to donate organs and/or tissue after their death for transplantation. This information is used by authorised medical staff to establish whether a person wanted to donate. A newly build ODR has just been launched in the UK. This also gives registrants the option to register a decision not to donate their organs or to nominate others to make the decision for them after their death.
- It’s simple to join the ODR by:
- going to www.organdonation.nhs.uk
- ringing 0300 123 23 23
- Anyone can register on the ODR. Age isn’t a barrier to being an organ or tissue donor and neither are most medical conditions. People in their 70s and 80s have become donors and saved many lives.
- One donor can save or transform up to 9 lives and many more can be helped through the donation of tissues.
The Care Quality Commission (CQC) is encouraging feedback from members of the public who use Independent Health Care Services for regular treatment, such as dialysis. To hear more about these services, they have developed dedicated landing pages for members of the public to share their experiences of care with them. Here is a link to the page - http://www.cqc.org.uk/content/please-tell-us-what-you-think-about-dialysis-services
The CQC is the regulator of all health and adult social care providers in England – so hospitals (NHS and independent), care homes and home provided in peoples’ own homes, GP practices and dentists. Care providers have to be registered with them and they then check they meet a number of legal requirements by inspecting to ensure they are providing high-quality, safe, compassionate care. These include fundamental standards of quality and safety. Here is a link to their website for further information www.cqc.org.uk.
People’s experiences of using health and social care services are vital in understanding how well a service is performing. The information CQC receives is essential to our inspectors as it helps them decide when, where and what to inspect.
The information is used when CQC is inspecting health and adult social care services to make sure that they are meeting the fundamental standards. If they are not, they take action against those responsible.
You can find out more about CQC, including viewing reports and rating of your local services to help you choose care here.
The BKPA gives a cautious welcome to these new guidelines which make it clear that the wishes of the dying person must be heard and respected; we believe that everyone should be treated as an individual, and that palliative treatment and intervention must be appropriate and not cause unnecessary distress. Kidney patients have the right to a good death, and many will need specialist palliative care to address the predictable effects of death from kidney failure. This level of supportive care can only be provided by suitably trained staff, in particular pharmacists. There is further work to be done in this area.
The full guidelines are available here http://www.nice.org.uk/guidance/ng31
There is a version of the guideline for people using services, carers and the public here ‘Information for the public’
For an end of life care framework in advanced kidney disease see http://www.nhsiq.nhs.uk/11739.aspx
BKPA calls for changes in organ donation law in Wales to trigger UK wide debate on increasing transplantation and saving lives
BKPA welcomes the change in law, coming into force in Wales today (1st December 2015), when it becomes the first UK nation to adopt a system of presumed or deemed consent for organ donation, as it provides an opportunity to trigger a wider UK debate on the need to improve organ donation rates.
Fiona Loud, Policy Director at BKPA said “Transplantation is the gold standard intervention for individuals with kidney failure and transforms peoples lives. Yet earlier this year we heard that the numbers of expected transplants had fallen by 5%, and that rates of consent to donation have stayed stubbornly at 60%. We want this significant event and the similar debates in the other devolved nations to initiate a UK-wide conversation and kick off a transplantation revolution”.
The BKPA, whose founder played a prominent role in the introduction of the original organ donor cards in the 1970s, believes that the change in Wales, which means that people will have to opt-out if they do not want their organs used after death, does not form the sole answer to increasing organ donation. We realise that for many people this is not a simple issue, raising as it does wider societal, moral and religious questions. The question of legislation versus education must form part of the national debate. We think it is encouraging that in Wales only about 3% of the population have registered to opt-out, with 89% saying they are aware of the new law. This level of awareness has been achieved through wide discussion and publicity in Wales. We would like to see similar levels of publicity elsewhere in the UK. At the same time, we encourage everyone to think about organ donation and let their families know their wishes.
There are other key aspects to a successful organ donation programme, and the first is making organs available. Potential donors are not consistently detected in all hospitals, although the introduction of organ donation champions and committees over the past few years has improved this situation. Doctors and nurses are essential links in the chain and we call for more rigorous follow-up of missed opportunities to donate1 in each hospital, and for adequate provision of specialist organ donation nurses. There are only about 5,000 people each year who die in circumstances where they could donate, so being able to identify and discuss organ donation with their families is critical.
A transplant makes a huge difference to quality of life and outcomes, by removing the need for dialysis and difficult symptoms when the kidneys no longer function. The people we support are constantly grateful to donors and their families who enable them to live their lives after the donor has gone. There is a major cost benefit to the NHS as dialysis treatment, primarily taken at hospital or in satellite units, costs approx. £30k pa, excluding other costs. The maintenance costs for a kidney transplant recipient are less than £5k pa2.
While this work continues, the need for transplantation does not wait; every day 19 further people will present with kidney failure. Kidney patients and their families are anxiously waiting and hoping for the gift of life will be watching the effect of the change in the law and hope for a better future. We will be supporting them and pushing for all opportunities to increase transplant and save lives.
About the BKPA:
The British Kidney Patient Association (BKPA) is a national charity which works to improve quality of life for kidney patients through advocacy, direct grants, educating and informing patients, counselling and funding patient-centred research, healthcare professionals and projects.
About kidney transplants:
There are 5400 people on the kidney transplant waiting list, but there could be a further 2,000 who are suspended from the list due to illness. Behind them are another 20,000 people on dialysis who are unlikely to ever be listed for a transplant. The average wait for a transplant is 3 years, with significant variation, and one kidney patient a day will die while waiting.
1. Potential donor audit
2. Costs of dialysis