Issuu on Google+

Supporting research, awareness & patients A Review for 2005


A N N UA L R E V I E W 2 0 0 5

Our Mission TO FUND LIFE-SAVING RESEARCH INTO KIDNEY DISEASE, TO IMPROVE THE QUALITY OF LIFE OF INDIVIDUALS LIVING WITH THE DISEASE AND TO INCREASE PUBLIC AWARENESS OF KIDNEY HEALTH.

CONTENTS Chairman’s statement

p2

New corporate identity

p3

Funding research

p4

Caring for patients

p16

Raising awareness

p23

Funding our work

p29

Financial report

p36

Who’s Who

p40

Thank you

p42


A N N UA L R E V I E W 2 0 0 5

01

The kidney is an amazing organ. It makes urine and helps to control your blood pressure. It also keeps your bones strong and healthy, and controls the manufacture of red blood cells. But did you know… - Over 7,000 people die from kidney failure, or related conditions, each year in the UK… - Diabetes is the single largest cause of renal failure in developed countries, and a third of people with this condition develop kidney disease - Today there are 2.5 million people in the UK suffering from chronic kidney disease - The Department of Health estimates that 20% of people in the UK with established renal failure (ERF) die every year. As there are around 37,000 people with ERF, this means that over 7,000 die of kidney disease, or related conditions, each year - Every 90 minutes, someone in the UK is diagnosed with kidney cancer – a rise of 68% over the past 20 years - Around 19,000 patients in the UK with established renal failure are on dialysis, as their kidneys have finally ceased to work – and every year approximately 5,500 more people join the list of patients on dialysis - Dialysis alone, costs the NHS around £21,000 a year for each patient in a satellite renal unit. - About 63% of patients on dialysis will be unsuitable for transplantation, and face a life on dialysis. - A kidney transplant lasts on average 14 years - 6,341 people were registered for an organ transplant this last year, of which 5,560 (88%) were waiting for a kidney - 1,692 kidney transplants took place during the year, making up 62% of the total number of organ transplants performed (2,724) - In other words, less than a third of people needing a kidney transplant each year received a new organ (compared with the 43% of people waiting for other organs) - With the number of organs donated by a deceased person dropping, patients receiving a kidney from a living donor now represent one in four of all kidney transplants

Over 7,000 people die from kidney failure, or related conditions, each year in the UK…


A N N UA L R E V I E W 2 0 0 5

02

Chairman’s statement In 2005, the National Kidney Research Fund continued to implement the changes described in last year’s Annual Review which were needed to reposition the charity. We are now stronger as an organisation and able to develop our major aim of supporting high quality research into renal disease, under our new corporate identity of Kidney Research UK. And never has our work been so crucial. Part 2 of the National Service Framework for renal services, published this year, highlights the UK’s high incidence of chronic kidney disease (CKD), while recent international studies have shown that around 10% of the population have some degree of kidney disease. Although only a small proportion of these will progress to established renal failure, the presence of any degree of CKD is a major risk factor in cardiovascular disease, such as heart attack and stroke. The treatment of CKD should therefore be a national priority and must involve: (1) general measures to prevent the progression of renal failure (2) specific treatment of individual diseases where appropriate (3) consideration of interventions to prevent cardiovascular disease Research in all these fields is vital if we want to improve clinical care. Despite comparatively limited resources, the UK has an outstanding record of biomedical research and is ranked second only to the USA internationally. At Kidney Research UK, we aim to contribute to this effort through increased funding for high quality basic and clinical research. Currently, over 70% of our charitable expenditure goes into research, and we are working on increasing this percentage. We are also dedicated to building a renal academic workforce for the future through our Fellowship and Studentship schemes (see pages 13-15). Kidney Research UK is fully committed to working with other organisations involved in renal research and the care of kidney patients. We jointly fund or co-ordinate projects with – among others – the Medical Research Council, Diabetes UK, the Royal College of Surgeons, the Renal Association, the British Renal Society and the British Transplant Society. We are also working in partnership with the bioscience industry, our recent STEPP project (pages 7-8) being a prime example of this form of collaboration. But we could not do all this without the continued support of the individuals and organisations who contribute to this important and worthy cause. Nor without the employees and many volunteers who have worked for the charity over the last year. I would like to thank you all; you are making a world of difference to patients with kidney disease!

Professor Charles D. Pusey DSc FRCPath FMedSci, Chairman


A N N UA L R E V I E W 2 0 0 5

03

New era… new challenges… new name! In 1961, when the National Kidney Research Fund was founded, established renal failure was effectively a death sentence. Renal transplantation was uncharted and risky territory, maintenance dialysis was in its infancy, and many patients had no treatment option other than hospice care. Today, an average 40-year-old patient can expect to survive about 15 years on dialysis, while a kidney transplant provides a better quality of life. In both of these developments – as with countless others – we have played a huge and vital role. For over four decades, this charity has been at the forefront of numerous crucial breakthroughs, whilst all the time raising public awareness of kidney disease and caring for individual patients. But the world moves on, and the key challenge we face now in the 21st century is the drastically increasing number of patients at risk of kidney failure through co-morbidities* such as obesity, cardiovascular disease and diabetes. The government’s National Service Framework 2005 states that there are currently 2.5 million people in the UK with chronic kidney disease, and estimates that the number of patients reaching established renal failure will grow by five times in the next ten years. Never before has kidney research been so important. “With a clear focus on where kidney research needs to go over the next decade and beyond, this year we re-examined our overall mission, and recognised a need to strengthen our identity in the renal sector,” explains Nick Turkentine, Head of Communications.“The organisation’s name was too long and its initials were easily confused with other kidney charities that are doing different work. We needed to re-emphasise our research focus, clarify our values, be more recognisable and become even more approachable to our supporters.” We remain the same people, unstintingly committed to the same goals. But through changing our name to Kidney Research UK, adopting a new logo and reviewing our mission, we intend to take the organisation forward: raising our profile and increasing our income as we continue to lead the way in researching the causes and treatment of kidney disease.

* Co-existing or additional diseases.


FUNDING RESEAR CH | A N N UA L R E V I E W 2 0 0 5

04

Funding Research… what your donations help us achieve A Message from Charles Kernahan, Chief Executive Over the past 44 years, we have been privileged to play a pivotal role in world-leading developments in renal medicine – yet as the treatment of kidney disease has advanced in leaps and bounds, so has the number of patients. It is a sobering thought that, within ten years, we should expect the number of patients receiving renal replacement therapy in the UK to nearly double. How are we to cope with this? Already we face a shortage of live donors, a shortage of organs being donated by a deceased person and a shortage of transplant surgeons. Even if we see a drastic change in this, it remains more essential than ever to keep researching the causes, treatment and cure for kidney disease. And research is where we excel. Every year – thanks to the tremendous generosity of our supporters – we help care for patients and continue to raise public consciousness of kidney disease; but as our Chairman’s Message stressed, it is into vital research that 70% of our charitable expenditure goes, and we have an objective within our three-year strategic plan to increase this to 75%. In the following pages, you can read about just some of the exciting and important developments in which we have played a crucial role this year. Of course, as the troubling statistics on page 1 show, we still have many challenges ahead of us. But with a clarified mission and new identity, Kidney Research UK looks forward to many more years of care, research, education and working towards a total eradication of kidney disease.


FUNDING RESEAR CH | A N N UA L R E V I E W 2 0 0 5

05

This year's highlights

Plans for next year

- Increased expenditure on our charitable activity by 10.8% to £5.02m

- Implement the new corporate identity arising from our recent review, launching the organisation in a new and pioneering direction (see p3)

- Reduced overall fundraising and management and administration costs - Maintained non-legacy income in an increasingly competitive environment - Continued supporting 27 Fellows and Students from previous years, and began supporting eight new Fellows and Students - Supported a total of 47 research projects, with 20 of these being new project commitments, 17 of which commenced during 2004/5 - Spent a total of £2.9million in the 2004/5 fiscal year on these Fellows, students and research projects - Kept our expenditure on research and training by reducing our running costs, at a time when most organisations have been forced to reduce theirs - Received commitments for funding of the ABLE campaign (see p7) which takes the total received since the start of the programme to £1million - Grew the contribution to the charity, from our trading activity, from £134,000 in 2003/4 to £195,000 in 2004/5.

- Continue to build on reduced costs and expenses seen in 2004/5 - Maintain our commitment to both the training and development of researchers and to the support of research projects throughout 2005/6 and beyond - Increase the research commitment of the organisation - Grow the non-legacy income by 8% per cent - Increase the contribution from trading activity to £0.5m in the fiscal year.


FUNDING RESEAR CH | A N N UA L R E V I E W 2 0 0 5

06

Lawrence McGinty "As a Health Editor for ITV News, I deal with a great many medical charities. Few are as thorough or as serious as Kidney Research UK. Attending its last two annual conferences, I've been struck by the depth of understanding – both scientific and human – shown in the papers and discussions. On a personal level, they're helpful, knowledgeable and professional." Lawrence McGinty, ITV

Nick Owen “There’s an awful lot of information on the internet these days; if you type in ‘kidney disease’ you could spend the next ten years going through the results. I had renal cancer three years ago, and had to have one of my kidneys removed, so I know how bewildering it can be. “We need something straightforward and clear cut, and Kidney Research UK is that. It’s an extremely important and powerful force – professional, supportive and at the cutting edge of research. Kidney disease is dramatically on the rise in the UK, but you can always be confident that the information provided by Kidney Research UK is reliable and well-based, both medically and psychologically.” Nick Owen, ITN News


FUNDING RESEAR CH | A N N UA L R E V I E W 2 0 0 5

07

We are ceaselessly seeking to learn more about the common causes of kidney failure. And with 70 per cent of our funds going into research, there is no other kidney charity that comes close to the level of funding we provide in the market place.

STEPP – prolonging the life of transplant kidneys One of the most extraordinary achievements of modern medicine, transplants give a new lease of life to almost 3,000 people in the UK every year – and kidney transplants are certainly the best possible treatment for most people with kidney failure. However, they are not always successful. No two kidney patients are exactly the same, and the reason for transplant rejections may well lie partly in the recipient’s genetic make-up, health, past illnesses or lifestyle. Not to follow their individual histories is to ignore a vital part of the puzzle. Yet until this year, there has been no UK database following the progress of patients who have undergone kidney transplants – only studies which followed the donated organ itself. Once the new transplant had proven a success, or had failed, the records were considered complete. Since 2001, we have been collaborating with three of the UK’s leading transplant companies on a study which will follow the transplant patients themselves, and in April 2005 we were delighted to launch our new STEPP project (Study in Transplantation Empowering Patients and Practitioners) in Belfast during the Renal Association (RA) and British Transplantation Society’s (BTS) annual conference. The three-year programme is being co-funded by Astellas, Roche, Wyeth and Kidney Research UK, and also brings in the further expertise of the RA and BTS. Data will be collected on kidney function, health problems and medication, along with patients’ own reports on their health and quality of life – including the effects they experience if their transplant fails. The resulting database will be managed by Kidney Research UK, but in order to benefit in as many ways as possible from the thorough and extensive information we will gather, there will be open access to it under controlled conditions. Initially a pilot study in one hospital demonstrated the feasibility of such a collection, and following an advertisement for research proposals on a larger scale, a high-ranking, international review panel selected a proposal from a consortium of five leading transplant units (Leicester, Oxford, London, Leeds and St Helier) to carry out the research. On completion of the study, we will have established an important database for renal transplants which, if accepted throughout the UK, will in due course lead to an increase in the survival rate of both patient and transplanted organ.

Over 7,000 people die from kidney failure, or related conditions, each year in the UK…


FUNDING RESEAR CH | A N N UA L R E V I E W 2 0 0 5

08

“Although the early results of renal transplantation are excellent, there are still some problems in the long-term which need careful addressing. These aspects are seen as being particularly important from the patient's perspective, as they may have a direct impact on quality of life. “By focussing not only on outcomes - in terms of survival of both the patient and the transplanted organ - but also on other causes of impaired health in transplant patients, the results of the study should give doctors a better understanding of the long-term problems experienced by kidney transplant patients. Astellas, Roche and Wyeth were delighted to have the opportunity of helping to support this very important project.” Dr Malcolm Brown, Medical Director (Designate), Astellas (News of the STEPP programme was picked up by the BBC, who covered the story on the 6 O’clock News in May. See p23)

Riminder Dosanjh’s story "I was four when I had my first kidney transplant, but it failed 14 years later and after I had it removed, I became dependent on dialysis for four years. This was dreadful after I had grown up through a perfectly normal childhood. "No one knows why the first transplant failed, but my dream came true in December 2000 when I got a new kidney and my health has improved ever since. I guess it is understandable that doctors tend to be organ-focused rather than patient-focused, as the organ is very precious. However, it seems a wasted opportunity not to follow our personal progress as well and I think perhaps if they found out more about the patient, they would have a better understanding, when an organ fails, of why it happened."


FUNDING RESEAR CH | A N N UA L R E V I E W 2 0 0 5

09

ABLE – supporting the ethnic groups most vulnerable to kidney disease A community at particular risk needs particular attention and care, and we are therefore putting a substantial amount of funding into research and vital awareness-raising among these more vulnerable minority ethnic communities. It all comes under the umbrella of our £1million ABLE programme; now in its third year, progress has continued apace: - Prevention is always better than cure, and in Birmingham we are putting this belief into practice by encouraging and educating the black community – as well as patients and their relatives – to control their blood pressure and diabetes. “Outside the USA, this is the first approach targeting the black community,” says Neerja Jain, ABLE’s project manager. “We are delighted that the public is proving so receptive and keen to learn, and they are encouraged that we are not simply making a token gesture, but that we are committed to investing further into this valuable project by extending it for another three years.” - Our three-year project in Leicester, which we are currently half-way through, is already proving very effective at assessing the levels of awareness and knowledge of kidney disease in the local South Asian community, as well as among the city’s Primary Health Care professionals. - In Southall, another multi-ethnic community, we are analysing and comparing levels of awareness and risk among its South Asian and European white populations. Early data has been presented at professional conferences, and is already helping us achieve some of these objectives.

South Asians and African Caribbeans are three to five times more likely to develop kidney disease than the white Caucasian population...


FUNDING RESEAR CH | A N N UA L R E V I E W 2 0 0 5

10

This year we are also launching two major new projects, being funded by about £500,000 from the Big Lottery Fund

Encouraging donors The need for organs in ethnic minority communities is several times higher than that of the general population. Yet, although a transplant is far more likely to be successful if the donor is from the same racial group as the patient, organ donation remains lower in minority ethnic groups. The reasons for this are unclear, and our innovative new project is exploring the differences in beliefs and attitudes towards living and cadaveric organ donation among the Caucasian, South Asian and African Caribbean populations in West London. In identifying and tackling the factors which can impact on the likelihood of donation, we aim to find culturally-appropriate ways of encouraging organ donation and reducing the drastic shortage of donor organs among the UK’s ethnic minority populations.

Understanding diabetes For nearly one in five people who suffer from kidney failure, diabetes is the cause, and diabetes occurs more often in the Asian population. So the new ‘Patient Pathway’ study aims to examine the treatment and service received by South Asians suffering from diabetes, and to ascertain how effectively they are monitored, referred and educated in order to prevent their condition leading onto kidney disease. From this, we will build up a strategy to help protect the kidneys of these particularly vulnerable patients, implementing changes in policy and practice. In all of these projects, we use to great advantage the Peer Educator model. This is a proven system whereby people working within their own communities are trained in health promotion matters, and is a valuable way of disseminating important messages about kidney disease and prevention to these communities.

Project Manager, Neerja Jain (second from left) with Birmingham’s team of Peer Educators and two health professionals.


FUNDING RESEAR CH | A N N UA L R E V I E W 2 0 0 5

11

Kidney experts join forces to create a Renal Genetics Group for the UK There is compelling evidence that genetic inheritance has a major effect on the development of kidney disease. This can either be directly due to a parent passing on an abnormal gene, or because certain inherited genes increase the risk of developing more complex disorders. With this knowledge in mind, Kidney Research UK has been working with the Medical Research Council and the Wellcome Trust, investing extensive time and resources into helping researchers carry out successful collection programmes of patient DNA and data. In the last few years, we have already seen hundreds of patients as we continue to build up DNA database resources. The data has been taken from blood samples donated by people with glomerulonephritis (GN) – which attacks the kidney filters – or with vesicoureteric reflux (VUR) – which often causes kidney failure in children. The resulting collections should ultimately enable us to perform genetic testing for GN, VUR and associated kidney diseases – which in the long-run should improve the existing treatments for renal problems, and allow new ones to be devised. Work so far is proving very successful, and from 2006 we intend to conduct a similar DNA collection, involving patients with polycystic kidney disease (PKD), a condition where numerous cysts eventually destroy the kidney. The GN and VUR programmes are already ahead of schedule in certain areas, and the valuable data harnessed from each of the three DNA studies is also likely to prove highly useful to medical researchers investigating other issues. We need to govern, standardise and sort the data – and recognising this necessity has resulted in an exciting new development. The UK Renal Genetics Group’s inaugural meeting was held at the Renal Association and British Transplantation Society’s Belfast conference in April. It is a combined initiative with the Renal Association, but membership will also include stakeholders from across the renal and genetics communities. The Group intends to steer, facilitate and ensure quality control of current renal genetics research – such as the DNA collections – but it also has a much broader remit with a view to future developments. Members will work together to - incorporate the whole renal community in developing genetic research - introduce state-of-the-art genetic analysis - increase funding for genetic research - increase opportunities for international collaborations “Advances in molecular biology are revolutionising medicine by enabling clinical scientists to identify precise causes of disease. This should enable much more precisely targeted treatments to be developed, and there are strong grounds for hoping that we can greatly improve diagnosis and treatment of kidneys by applying genetic techniques. This will require collaborations between doctors and scientists throughout the UK, and the UK Renal Genetics Group has been formed to exchange ideas and expertise and to maximise the collaborations. The Group held it first meeting in April during the annual meeting of the Renal Association and is developing an exciting programme of work.” Professor Andy Rees, Chairman of the UK Renal Genetics Group


FUNDING RESEAR CH | A N N UA L R E V I E W 2 0 0 5

12

Vascular Access – improving conditions for patients on dialysis Patients on dialysis require a means of being connected to the machine. This may sound straightforward and logical, but vascular (blood vessel) access is problematic to say the least. One of the preferred methods is to create a permanent fistula in the forearm. A surgically-enlarged vein with a cap, the fistula is rather like a blood reservoir and enables regular and clean access to the bloodstream. In order to avoid the procedure taking place when the patient is already in crisis, however, the fistula should be created about six months before dialysis is actually needed, to allow sufficient time for it to develop and become useable, and to re-create those which fail or become infected. And this is where the current reality falls a long way short of the best practice guidance set out in the Government’s National Service Framework.

“All children, young people and adults with established renal failure are to have timely and appropriate surgery for permanent vascular or peritoneal dialysis access, which is monitored and maintained to achieve its maximum longevity”. The Department of Health’s National Service Framework for Renal Services (Part 1)

In the UK, the surgery is currently carried out by either vascular or transplant surgeons. But with their ever-increasing workloads, as well as a decreasing number of trainee surgeons and a lack of hospital beds, waiting lists are higher than in many other countries; and for some patients, too long a wait can ultimately prove fatal. We began to look at the whole issue of vascular access in 2002, when our nationwide survey of dialysis services revealed that no reliable data existed regarding how many patients actually have a fistula in place and ready in time for dialysis. An audit was needed. A specially-created steering group was set up by Kidney Research UK, comprising experts from around the country, including the Vascular Society and the Renal Association - who had themselves intended to survey this area. Following a collaborative effort, a qualitative vascular access questionnaire was created, and sent to all 72 renal units across the UK by the Renal Registry. To date, preliminary results from that collaborative research questionnaire have been received from 90% of units, and important information concerning the current state of play has been identified. Amongst haemodialysis patients in particular, infection and in-patient loads were high.The preliminary findings indicate that, on average, 76% of all dialysis patients were having their therapy delivered by permanent vascular access. One in twenty haemodialysis patients were also occupying a hospital bed – equating to over 320,000 bed days a year in this group. One of the main problems to emerge was the insufficient preparation of patients starting dialysis. In total, 43% of all patients commenced renal replacement therapy using ideal vascular access, and for haemodialysis patients, this figure was 31%.The survey also found that serious MRSA infections were recorded in 4% of haemodialysis patients.When compared to the total number of MRSA infections in the UK in 2004, the results indicate that patients on haemodialysis potentially contribute up to 10% of all MRSA cases. The challenge now is to demonstrate best practice and deliver improvement across the entire scope of the Renal NSF. Completion of all the results will help to create agreed definitions and recommended measures of care for vascular access, improving the quality of care for patients.

Lifeline for dialysis - a wrist fistula or technically a "radiocephalic arteriovenous fistula". This is the best form of dialysis access if it can be performed.


FUNDING RESEAR CH | A N N UA L R E V I E W 2 0 0 5

13

Research Awards for Year 2004-05

As ever, the only reason we can write this section of the Annual Report is because of you, our benefactors. Thanks to individuals, corporations and trusts, each year we are able to foster the education and training of doctors, nurses and scientists by investing over £2million on project grants, fellowships and PhD studentships. These experts are the future of kidney medicine in the UK. Here are just a few recent examples of some of their pioneering and world-leading discoveries:

Tackling kidney stones… Kidney stones are an excruciatingly painful condition, affecting 12% of men and 5% of women by the age of 70. But now one of our students has identified a channel in the kidney cell that controls the sodium (salt) balance. Sodium influences the forming of stones, so this newlydiscovered channel could become an important target for new therapies. Researchers funded by Kidney Research UK have also discovered that phytic acid – which is found in vegetables – actually inhibits stone growth. In other words, a change of diet to increase phytic acid in the urine could help prevent kidney stones.

Reducing inflammation in glomerulonephritis… One of the most common causes of renal failure is glomerulonephritis (GN), which is caused by the inflammation of the filters in the kidney (glomeruli). Researchers have found that a molecule already used to treat other inflammatory diseases may not only reduce the scarring which follows GN, but may also block the function of another molecule which actually causes inflammation.

Providing recommendations for hormone levels… Bone disease known as renal osteodystrophy (ROD) is common in patients with chronic renal failure (CRF). However, now researchers have demonstrated that, although children suffering from CRF who have normal levels of parathyroid hormone (PTH) grow better than children with CRF and raised PTH, all children with CRF eventually develop ROD. This provides for the first time evidence on which to base PTH level recommendations.


FUNDING RESEAR CH | A N N UA L R E V I E W 2 0 0 5

14

Combating PKD cysts… At least one in 1,000 people suffers from polycystic kidney disease (PKD), a condition in which both kidneys become dramatically enlarged with hundreds of fluid-filled cysts. Over half of those affected will have developed kidney failure by the time they are 60. The disease is hereditary, and a PKD sufferer has a 50% likelihood of passing it onto his or her children. Recently, however, researchers have discovered that certain novel drugs inhibit cyst growth. This discovery means that it may become possible to prevent the development of the multiple cysts within the kidney.

Testing kidney function – at home… Many diabetics will be familiar with the finger-prick test to measure their blood sugar levels at home. Now a similar method is being trialled at the University of Oxford, as a new way of measuring kidney function. Traditionally this sort of test would involve up to six hours in hospital and giving repeated blood samples, so if this study proves successful it could save patients many hours of hospital visits and the stress of giving numerous samples.

Investigating wasting illness… The loss of lean tissue, especially muscle, is common in patients with established renal failure. This protein-wasting illness (cachexia) is widely regarded as a major factor in limiting longterm survival. Now a new study aims to devise nutritional supplements, based on researching metabolites (molecules), whose effectiveness against cachexia would have a direct benefit to the patient’s longevity and quality of life.

Developing anti-cancer therapy… Every year in the UK, 6,000 new cases of kidney cancer are diagnosed. This is a huge increase in incidence of a tumour that is highly resistant to chemotherapy, and effective therapy is urgently needed. Researchers are looking at the development of a new anti-cancer therapy that we hope will offer the prospect of better treatment for patients with metastatic (spreading) kidney cancer.

Researchers funded by Kidney Research UK have also: • Developed a specific investigation which could allow the prediction of patients who would benefit from surgical widening of their renal arteries, thus improving kidney function.

• Confirmed that ‘natural killer cells’ act earlier in the rejection process than other types of white blood cells, and examined a new form of treatment which blocks the immune activation process which was effective against these early-acting cells.

• Investigated three types of water movement – diffusion (both directions), convection (ultra-filtration out of the patient) and reabsorption (water going back into the patient) – which will aid the development of dialysis fluids to help prevent vessel injury to the membrane occurring in the future.

• Studied a virus commonly causing infection post-transplantation and found a complex immune process that may be useful in tailoring both immunosuppression and anti-viral treatment on an individual basis.

• Increased knowledge of why white blood cells either help or hinder damage to the kidney cells, and how different cells regulate parts of the immune response.


FUNDING RESEAR CH | A N N UA L R E V I E W 2 0 0 5

15

Fellows Day: bringing together the best young talent in renal research As part of our dedication to continuous developments and discoveries in renal medicine, we recognise the huge importance of supporting talented young doctors and clinicians who want to make a career in the treatment and prevention of kidney disease. We therefore invest over £2 million a year into project grants, fellowships and PhD studentships to help educate and train the doctors and scientists of the future. In April 2005 these grantees attended our fifth Fellows Day, funded by The Amgen Foundation as part of its generous ongoing commitment to our work. The two-day event in Belfast celebrated the achievements of our Fellows and students, recognised their vital role and emphasised the importance of their professional development. Although there is an extremely high demand for our Fellowship funding, with only 15% of applications being successful, we have funded more than 100 young scientists and clinicians in their research over the past 20 years. Two of these are Evangelia Prodromidi and Dr Ed Sharples, who both won prestigious prizes at this year’s Fellows Day.

Evangelia Prodromidi is a PhD student at Imperial College London working at Hammersmith Hospital, and won the prize for Best Poster Presentation. We are supporting her research into whether adult stem cells, particularly from bone marrow, could contribute towards the regeneration of damaged renal tissue. The successful results she has had so far could provide an initial step towards devising cell-based therapies for the kidney by using the patient’s own bone marrow to replace damaged cells. “Receiving the award was a great honour. I have always been really excited about my project, and the Fellows Day was an informative and challenging opportunity for me to talk about my work and present it in an understandable, interesting and scientific way. “Patients on dialysis have to cope with so much frustration and suffering, and this award encourages me to keep researching, keep learning and keep hoping that my work will help to find new therapies which will improve the quality of life for renal patients.”

Dr Ed Sharples, a non-clinical fellow at the William Harvey Research Institute in London, won his prize for Best Oral Presentation. The talk focussed on his investigations into the potential of a drug – currently used for anaemia – to prevent acute renal failure. Further clinical trials are already being proposed since his results have found that erythropoietin (EPO) significantly protects the kidney. “These findings are significant because EPO is a well-established and safe drug. The funding from Kidney Research UK has allowed the research to be undertaken, and the results have been confirmed by other international groups. The prize is a validation of the work and contributions of the whole renal laboratory.”


CARING FOR PATIENTS | A N N UA L R E V I E W 2 0 0 5

16

Caring for patients Whilst the bulk of our funds go to researching improved treatments and an ultimate cure for kidney disease, we are also dedicated to giving direct help to those who are suffering today. This year, we have spent £209,309 on providing information, advice and grants to people currently suffering from kidney disease and in need of that extra bit of support.

A message from Jeremy Nicholls, Chairman of our National Patient Advisory Group (NPAG) My name is Jeremy Nicholls and I have been undergoing end stage renal replacement therapy since 1976. Very few patients are privileged to be able to talk to the medical profession in anything other than a patient capacity. So I was honoured to accept, with a little trepidation, Kidney Research UK’s invitation to become the Chairman of the National Patient Advisory Group (NPAG). It is difficult for me to believe that I am approaching the end of thirty years with this condition, and during this time I have done a year of predialysis, had two transplants, completed five years of continuous ambulatory peritoneal dialysis (CAPD) and I am just starting my twentieth year of haemodialysis. Like most patients, after thirty years and at the age of forty three, I have been prodded, poked and cut in most places. The NPAG has a sister group in Scotland. I was invited to one of their meetings and was very impressed by them. Over the past year they have completed the Loveseat and continue to support the Renal Nursing Programme at Glasgow Caledonian University. Similarly, the NPAG has been very active, lobbying supermarkets and food manufacturers over the salt content in food. Of course we have a number of replies stating that the salt content is being reduced and is being replaced by potassium chloride. Although well intentioned, this is a mistake as potassium chloride can be lethal to renal patients. Therefore there is more education required if we are to have any effect in this area. The NPAG is also involved with the ABLE project, highlighting the issues faced by ethnic groups, where the incidence of renal failure is higher than amongst the rest of the population. Both PAGs consist of patients, carers and members of the NHS professions. Individually members from both groups are involved in various aspects of both voluntary and paid NHS work, including the Expert Patient and Trust Forum programmes. The main aim is to provide a patient voice in all areas of the work of the charity. Members sit on various research

37,000 people are being treated for established renal failure in the UK – a figure that is growing by 8% each year…


CARING FOR PATIENTS | A N N UA L R E V I E W 2 0 0 5

17

committees and are invited to meetings and functions where they discuss the challenges and issues facing the renal community. I have recently been asked to be the patient representative on the Research Grants Committee and sat amongst the “great and the good� as they have discussed a number of research proposals. Each proposal was discussed and ranked over the course of several hours. At the end of the day the top ranked proposals were accepted for funding. It was disappointing to see some very good proposals rejected due to a lack of funding. This brought home to me the importance of the work done by all the volunteers around the country. I mention this because a few months ago I was leaving a garden centre near Bristol and happened to see an elderly man selling Kidney Research UK badges. I ambled over and bought a badge. He told me that he sits there for a few hours every Friday, talking to the public raising money for the charity. It was a cold day in November and I was very impressed by his dedication. As you are aware, Kidney Research UK is funded almost entirely from private donations and without the generous support of people like you this research would not be possible. Consequently the outlook for people like me would be bleak. Therefore, as someone who has benefited from the advances in renal medicine over the years, please accept my thanks for your efforts in raising much needed money. Since joining the NPAG I have been fortunate enough to be invited to a few conferences where I have had the opportunity of meeting doctors and scientists who are dedicated to resolving the many issues and mysteries that still face the renal community today. I have been out of my depth at times, but surprised at how much I understand the renal condition. It has been a great privilege to be allowed to observe the medical profession at close quarters. Therefore, I would also like to take this opportunity of thanking the doctors and scientists who work tirelessly in their laboratories, researching answers to questions posed by the renal condition. I have thoroughly enjoyed the past year as part of such a useful organisation and I am looking forward to the challenges and problems that lie ahead. Mr Jeremy Nicholls FCCA BSc(Eng) Chairman, NPAG


CARING FOR PATIENTS | A N N UA L R E V I E W 2 0 0 5

18

Kidney Research UK’s Kidney Health Information service – there to help in every aspect of kidney disease Visit our revamped website As part of this ongoing commitment, we are continuing to develop a comprehensive information service that will embrace new technology. This includes redesigning our website. Rather than trying to be all things to all people, our new site – which went live in October 2005 – has separate sections for patients wanting answers and information in straightforward language, and for healthcare professionals requiring more technical and in-depth material. Both groups will benefit from the large amount of current information which we will be transferring onto the web. Patients will also be able to download up-to-the-minute fact sheets, tied into latest research, whilst healthcare professionals will have access to all our latest research and discoveries as soon as they are made public. The ongoing development of the site will eventually lead to a secure server for on-line donations and shopping, as well as for online registration for events. The new site will be more interactive too, so we hope to receive your thoughts and reactions on what it offers, and feedback on what else you would like to see there. We can then focus the information we provide on exactly what you are looking for. It’s your site – so let us know! Please visit us at www.kidneyresearchuk.org


CARING FOR PATIENTS | A N N UA L R E V I E W 2 0 0 5

19

You’re not alone… That’s the message we want to get across to any kidney patients who are confused, worried or looking for more information about their condition. Thanks to the generosity of our supporters, we have been able to keep running our valuable Kidney Health Information service throughout this its sixth year, bringing reassurance and assistance to hundreds of patients and their families. “When patients are diagnosed with kidney disease, they are sometimes in shock and don't absorb all the information they are given; this is where they contact the us. Most of the calls I take are from people looking for medical information, contact numbers, or details about holiday dialysis, insurance or benefits. But sometimes they ring because they just need reassurance and a friendly voice at the other end of the ‘phone. "It's interesting and challenging work, finding answers to a wide variety of queries. I had a call from one 16-year-old girl who was very upset because she had to be on a children's ward for her dialysis. She was there for several hours a day, three times a week, and felt terribly lonely and isolated. I gave her a contact number so she could arrange to have a penpal – another teenager going through the same thing. In this way they could write long letters to each other while they are having their dialysis. "Seeing a consultant can be an emotional experience, and sometimes patients feel they haven’t asked or remembered everything they need to know. With the assistance of our medical advisors, I can often answer their questions or advise them on the best way of expressing their concerns next time they see their consultant." Linda Barnard, Kidney Health Information Kidney disease can be a lonely and frightening experience, but you really aren’t alone. If you want advice, information or a just an understanding ear, you can reach Kidney Health Information on 0845 300 1499 or email kidneyhealth@kidneyresearchuk.org.

Patient DVD The Government’s National Service Framework calls for “better information choice at preand post-established renal failure”. This is a principle we wholeheartedly endorse, especially given the dramatically increasing number of renal patients and the growing demand for clear and practical information embracing new technology. Working in partnership with the other leading charities and stakeholders, including the British Renal Society, we are therefore developing a range of innovative DVD programmes aimed at informing and supporting kidney patients. An interactive resource, it will be possible to adapt the material for various audiences; but whether you are a patient, a carer or medical staff, you will find the high quality material both accessible and practical. Patients will be involved at all stages of the programme’s development, and features will include an introduction to kidney disease, information about treatment options, long-term care issues and advice on effective disease management. Subject to confirmation of available funds, we plan for the DVDs to be available in late 2006/early 2007.


CARING FOR PATIENTS | A N N UA L R E V I E W 2 0 0 5

20

“All children, young people and adults with chronic kidney disease are to have access to information that enables them with their carers to make informed decisions and encourages partnership in decision-making, with an agreed care plan that supports them in managing their condition to achieve the best possible quality of life.” The Department of Health’s National Service Framework for Renal Services (Part 1)

Healthcare in the UK is developing constantly and rapidly, as are advances in information technology (IT). In order to combine the two, Renal Information Exchange Group (RIXG) was created two years ago with representation from the entire renal community, including professional bodies, patients, carers and the Department of Health Renal Policy Group. The remit of RIXG is to be actively involved in all information initiatives in the NHS concerning kidney disease, with the aim of ensuring that such developments meet the needs of the entire renal community, including patients, carers and professionals. Already the range and depth of IT expertise in the renal community is arguably greater than in any other branch of clinical medicine, and RIXG aims to continue this as we make further advances in IT to support and care for people with kidney diseases. To learn more, visit www.renal.org/rixg

Renal PatientView Since its formation in 2003, RIXG has developed Renal PatientView which provides online information about renal patients’ diagnosis, treatment and their latest test results directly from their own renal unit. Patients can share this information with anyone they wish and view it from anywhere in the world. Renal PatientView also offers patients the opportunity to go online at any time to read information about their own specific condition or letters about them from the renal unit, investigate suitable diets, check transplant lists and find out further information about kidney disease. Kidney Research UK’s representative on RIXG is trustee Diana Blass.“The Renal Information Exchange Group is dedicated to informing and empowering patients, and we are delighted to be involved in a Group which works brilliantly as a team to the benefit of patients and healthcare professionals alike,” she explains.“In particular, the development of Renal PatientView, of which fellow-trustee Professor Neil Turner was one of the key designers, will be of significant value to patients.” For more information, log onto www.renalpatientview.org The site will also tell you if your own renal unit is participating yet, or timetabled to join up.


CARING FOR PATIENTS | A N N UA L R E V I E W 2 0 0 5

21

Do you need help with an individual grant? Anyone who has been affected by kidney disease knows how hard it can be to maintain a normal lifestyle: it can affect your independence, your finances, your quality of life and your self-esteem. And it’s not easy to keep asking for help from family and friends. Our patient grants can be a lifeline to those struggling to make ends meet, or determined not to give up their studies or job. This year we were able to award grants to 190 kidney patients throughout the UK. Matthew Hambley-Walker (27) was one of them. “I was diagnosed with chronic renal failure when I was 19. I had wanted to be a PE teacher, but the physical aspect would have been too much with dialysis, so I turned to art and started a fashion diploma. I didn’t manage to finish it though, as I had two kidney transplants - both of which failed straight away - then I was really ill and in hospital for a year. “But I wanted to go back to college and do something with my life, so at 22 I started the fashion diploma again from scratch, and when that was finished I began studying for a degree in fashion women’s wear. This has been my final year and I had to produce eight outfits for my final collection. The fabrics cost a lot of money, and Kidney Research UK helped by putting £500 towards them. “I’m so grateful for that help and support, as I couldn’t work to earn any money – doing a degree as well as dialysis is quite difficult as it is – and trying to get the actual funds towards it was really hard. The grant took a lot of pressure off me and my parents; it would have been very hard to finish the degree without it.” Our Kidney Patients’ Grant Committee makes these awards on individual merit basis. If you would like to apply for a grant, please call Elaine Davies on 01733 704658 or email grants@kidneyresearchuk.org


CARING FOR PATIENTS | A N N UA L R E V I E W 2 0 0 5

22

How it works: introducing two members of our Kidney Patient Grant Committee… Dr James Medcalf, Chairman: “In order to understand every aspect of a patient’s request for financial aid, we ensure that the Kidney Patient Grant Committee is made up of members from a wide range of backgrounds around chronic kidney disease. We have a consultant nephrologist, a patient, a renal specialist nurse, a transplant co-ordinator, a renal social worker, a carer and a Trustee. “Members are sent each new request within a week of its being received; the names are always crossed off, so we only know the patient’s age and gender. It’s not always cut and dried, but we have clear guidelines to help us each decide, and provided there’s a majority decision, the patient will then be sent the grant, or an explanation as to why their request could not be met. “We do support the vast majority of the applications we receive though, and for those individuals I’d like to think we improve their lives dramatically. I hope also that the Patient Grants reassure the donors of Kidney Research UK that part of what they’re funding is the direct improvement of the lives of people with kidney disease. “For me, it is a great privilege to be on the panel, as it gives me an enormous insight into the problems which patients with kidney disease face on a daily basis, and as a result I think it makes me much better in the rest of the work I do.”

Ray Mackey, kidney patient: “I think it’s extremely important to have someone like me on the panel. As a patient myself, I’ve been there and can understand better than anyone the problems the grant applicants have. “Kidney disease doesn’t just affect the patient, it affects the whole family – especially if there are other health problems with it, such as diabetes or heart disease. It can put a real strain on relationships. If a marriage breaks down, people need to live in a new property, which can be an expensive change. Others might have been self-employed, and when they suddenly get acute kidney failure their lives are turned upside-down: they have no medical insurance, no pension scheme, can’t work, have lost their house… this sort of thing happens to a lot of people, and as long as the funds are there, we continue to give grants as and when possible. “I’ve had help as a patient, and I see patients who are in a far worse situation than me. Being on the Committee gives me the chance to be involved in patient issues, and to give something back.”


RAISING AWARENESS | A N N UA L R E V I E W 2 0 0 5

23

Raising awareness Everyone should know how to recognise the warning signs that they may have kidney disease. Catching it early could result in less serious consequences than if it goes undiagnosed for a long time. The following are common signs we should all be conscious of, for ourselves and for others – particularly anyone with kidney disease or diabetes in their family: - Puffiness in the face - Swelling of the lower leg - A change in volume of urine being passed (either a noticeable increase or reduction) - A change in urine consistency (colour or unpleasant smell) - Difficulty or pain in passing urine - High blood pressure – especially in young people

…news…news…news…news…news…news… The media: taking us into every corner of the UK We use all means available to us to bring home the message of kidney disease. And this year we have continued to take advantage of the ever-growing popularity and accessibility of the media to reach a vast and diverse audience. That our expertise and knowledge is nationally renowned is evident in the fact that, during the six months between October 2004 and March 2005 alone, we were focused on, quoted or referred to in 220 stories on radio shows, news programmes, Teletext, websites and in local and national publications.

National TV News We were delighted when our ground-breaking new STEPP programme (see p8) was covered at some length on the BBC’s Six O’Clock News (19 May 2005). Explaining the “ambitious project to prolong the life of transplant kidneys”, the reporter pointed out that the average lifespan of a donor kidney is just 11-14 years. She went on to speak to patients as well as Kidney Research UK’s project advisor Dr Anthony Warrens, and told the primetime viewing audience the motivation behind our study: “if scientists can identify why organs fail, they might be able to develop treatments to make them last longer”.

Television series on organ donation In August, we collaborated again with the BBC – this time on a series of half-hour documentaries about organ donation and transplant. Created with the purpose of raising public awareness of the success rate of transplantation, and encouraging more people to sign up to the Organ Donor Register,“DoNation” was the first ever initiative of its kind. The series of documentaries ran at prime time every evening from Monday 22 – Friday 26 August, on BBC television, radio and on-line. Each programme featured people who had already had a transplant, or were waiting for one, as well as the medical staff involved in the life-changing operation.


RAISING AWARENESS | A N N UA L R E V I E W 2 0 0 5

24

Organ donation – give someone a second chance of life Twenty per cent of the UK’s adult population have signed up to the NHS Organ Donor Register… (are you one of them?) Twenty per cent. That’s a wonderful statistic. But it’s only a start.

Photo courtesy of Birmingham Post & Mail.

The truth is, we need many thousands more to sign up. Even as you read this, over 6,000 people around the UK are waiting for an organ transplant – and most of these need a kidney. Every year, several hundred of those waiting will die simply because a donor could not be found. Pete Kumar, 31, was diagnosed with kidney failure ten years ago. Although he received a transplant at 22, it failed quite quickly and he has been waiting for a suitable organ to be donated ever since. In the meantime he has to undergo dialysis for four hours a day, three times a week. "I had no idea how my life was going to change when I was diagnosed. At 21, I literally had my whole life ahead of me, and in the space of a few days my world was turned upside-down. From planning my career, marriage and kids, my priorities changed completely to simply surviving. "It has been very hard - there's no getting away from the fact that my life now revolves around my dialysis, and the inevitable wait. Whatever I do, even when it comes down to my family and my children, I have to put dialysis first. If I don’t, I’m playing with my life. The fact is, unless I get a donor, my life is limited. But we live in hope!" The more people who pledge to donate their organs after their death, the more people like Pete stand to benefit from a new chance at life. If you've not yet signed up to the NHS Organ Donor Register, please don’t delay any further. You can do it by calling the Donor Line free on 0845 60 60 400. Or log onto www.uktransplant.org.uk It only takes a few seconds, and may well save someone’s life. When you register, please tell your friends and loved ones of your wishes.

Twenty per cent of the UK’s adult population have signed up to the NHS Organ Donor Register… (are you one of them?)


RAISING AWARENESS | A N N UA L R E V I E W 2 0 0 5

25

Bringing kidney disease to the attention of Parliament By reaching MPs and Peers, and involving them in our concerns, we are getting the ear of the country’s leaders; the people who make the changes to health care and medical services. This year as ever, therefore, we have run an active parliamentary programme and continued to use a variety of parliamentary levers to bring kidney disease, and issues surrounding its treatment and management, to the attention of Government.

• The Government gives guidelines for renal services There is general paucity of care in all areas of the treatment and management of renal disease at present, and service provision varies considerably from one area to the next. So we were enthusiastic and hopeful as we welcomed the publication this year of Part II of the Government’s National Service Framework for Renal Services. We are keen to ensure that it sets out comprehensive structures for raising standards, reducing variations in services and improving the health care of renal patients across the UK. Speedy and full implementation of the Framework is crucial, so we have been working with supportive MPs and Peers to exert pressure on the Government to act decisively, in order to alleviate the current challenges and concerns facing kidney patients. This has involved tabling parliamentary questions to identify some of the potential barriers to implementation, as well as asking parliamentarians to write directly to the Secretary of State for Health on our behalf.

• Organ donation: proposing presumed consent One area of concern shared by everyone in renal medicine is the widespread lack of donor organs available for transplantation, and one of our priorities is to improve the current donor rate. We therefore took advantage of the Human Tissue Act 2004. Among other functions, the Act aimed to clarify the law regarding organ donor registration, removal and transplantation in order to improve public confidence in the system and thus encourage more people to agree to donate their organs. We used the opportunity presented by the Act to meet with MPs and Peers to discuss the benefits of moving to a system of presumed consent with ‘opt-out’, which would allow for a person’s organs to be made available for donation unless he or she had specifically registered a desire to ‘opt out’. Building parliamentary support for a move towards this form of consent resulted in the tabling of amendments at the Report Stage of the Act in the House of Lords by our National Presidents, Viscount Chandos, Lord Hughes of Woodside and Lord Davies of Coity. The amendments, while not put to a vote, generated considerable support in the House and resulted in meetings with the Health Minister, Lord Warner, and key officials in the Department of Health.

• In campaigning for an increase in the rate of organ donation, on 7 December we also launched an Early Day Motion in the House of Commons to mark the 10th anniversary of the Organ Donor Register, which received 72 signatures. An Early Day Motion provides an opportunity for MPs to express an opinion on a specific issue and is used to assess support for a particular cause or action.

• We continue to draw to the Government’s attention the need to invest in research into the causes of kidney disease and its associated conditions – such as hypertension and type 2 diabetes – and the need to improve the patient pathway by the possible introduction of routine screening.


RAISING AWARENESS | A N N UA L R E V I E W 2 0 0 5

26

Scotland: continued success in raising awareness of renal issues Kidney Research UK maintains its pivotal role in raising the profile of kidney disease in Scotland, and improving renal care throughout the country. This year we have continued to provide the Secretariat to the Scottish Parliament’s Cross Party Group (CPG) on Kidney Disease, holding meetings with the Minister for Health, Andy Kerr MSP, and Scottish Executive Health Department officials. As a result of these, we have: - highlighted the renal community’s desire for a National Managed Clinical Network and the need for a National Plan - brought statistics showing the prevalence of chronic kidney disease to the Minister’s attention, as well as projects such as PatientView (see p20) - participated in the Scottish Executive Health Department’s visit to the Scottish Renal Registry, which highlighted the systems already in place that could support the easy transition to a National Managed Clinical Network - agreed to focus on: i) recruiting more MSPs to the CPG through patient-led briefings and meetings with MSPs; ii) creating greater understanding about kidney disease in the Scottish Parliament; iii) planning a Members’ Debate for Autumn 2005; iv) initiating dialogue with those responsible for developing the Community Health Partnerships; v) building political support for improved services for kidney patients in Scotland At the same time, Scottish Executive officials have highlighted opportunities for the CPG to have input into the Diabetes Framework Review, Chronic Disease Management plans and the Coronary Heart Disease consultation.

The Scottish Patient Advisory Group Naturally, the people who know the most about what kidney patients want are the patients themselves. The Scottish Patient Advisory Group (SPAG) was set up in June 2002 to give renal patients in Scotland an opportunity to advise us on where they believe our funds and other activities would best be directed. SPAG currently consists of 10 members, made up of patients, carers and experts from the renal profession, and they have continued to provide invaluable support for us this year. - Following CPG reports documenting the difficulty of dialysing when away from home, SPAG conducted some research to investigate the availability of holiday dialysis places across Scotland - The group also began a letter writing campaign to update MSPs on renal disease in their own constituencies and to request meetings, as well as encouraging them to join the CPG, participate in this Autumn’s members’ debate, and press Health Boards for plans to cope with the predicted increase in patients requiring renal replacement therapy - Members commissioned a nationwide Pre-Dialysis Survey to investigate the services available to kidney patients approaching renal failure. A report on the results will be shared with relevant patient, nursing, medical and management groups, while the Chief Executives of Health Boards will be copied in and the results brought to their attention - SPAG also recommended to our Board of Trustees that we continue to support the successful Renal Nursing Programme run by Glasgow Caledonian University


RAISING AWARENESS | A N N UA L R E V I E W 2 0 0 5

27

- Three members of the Group have also started participating in the newly-formed SIGN Guideline Development Group for Chronic Kidney Disease As a direct result of working more closely with patients through the SPAG and CPG, we were again invited to attend the Scottish Kidney Federation’s Conference in April 2005, where speakers we recommended included our new Trustee, Professor Andrew Bradley, and two members of the SPAG.

The Loveseat Encouraging organ donation is as much of an issue in Scotland as it is in England and Wales, and one of the most moving projects for encouraging new donors has been the Loveseat, which was unveiled on 24 June 2005. Created by craftsman Alan Kain, the Loveseat is made of 14 types of Scottish wood, and is the focus of a considerable new effort by Kidney Research UK and the West of Scotland Transplant Co-ordinators. The project combines a variety of aims: - to establish a permanent place of tribute to organ donors and their families - to assist the 6,000 plus people currently on the transplant waiting list, by encouraging more Scots to consider organ donation - to inspire additional funding into transplantation research - to provide a focal point where transplant recipients may celebrate and give thanks for the kindness of those who have donated organs - to be a place of comfort and remembrance to the families of organ donors Funded by Kidney Research UK, the Loveseat is embedded with 131 individual silver pieces, made by goldsmith Shirley Paris, each piece representing every organ donor from the West of Scotland since the beginning of the new millennium. New silver pieces will be added at the end of each year to represent the number of organ donors that year. A limited edition jewellery collection has also been created incorporating the silver piece design within a beautiful pendant, earrings and tie / lapel pin range. The seat has attracted the attention and publicity support of Scottish celebrity Carol Smillie (pictured), and will be permanently housed in the prestigious Kelvingrove Museum & Art Gallery when the museum re-opens in summer 2006, but until then will be on public display within the main foyer of the Wolfson Medical School Building at the University of Glasgow.


RAISING AWARENESS | A N N UA L R E V I E W 2 0 0 5

28

Wales: campaigning for badly-needed improvements in renal services Although The National Service Framework (NSF) for Renal Services in Wales was launched in January 2002, its development has been considerably slower than that of the Renal NSF in England. There is a huge shortfall of access to kidney services in Wales, and we are keen to ensure that the country’s NSF is delivered as soon as possible to address this worrying situation. We have therefore continued to work across Wales this year to identify initiatives that specifically improve research for the benefit of local patients. But a knock-on effect of poor access to renal services in Wales is the acute shortage of donor organs – at the end of March this year, 324 people in Wales were on the waiting list for a new kidney, yet in 2004-5 only 47 people who died in Welsh hospitals donated any of their organs. This year, we have supported drives by the Welsh Assembly Government to increase the level of organ donation in order to maximise the availability of kidneys for transplantation. We also welcome the new bi-lingual leaflets produced by UK Transplant; this Annual Review has already highlighted our efforts to increase awareness of the importance of organ donation, particularly among harder-to-reach communities, and we hope the leaflet will reach many of the more remote, Welsh-speaking communities which otherwise would not have access to this important information.


RAISING FUNDS | A N N UA L R E V I E W 2 0 0 5

29

Raising funds Treatment for renal failure in the UK costs 2% of the total NHS budget… In other words, £1 in every £50 spent by the NHS goes on treating kidney failure. This is an astonishing figure, and further evidence of how essential our research is to reducing the demands kidney disease puts on our health service. And we simply could not achieve a fraction of what we do without the support of individuals, companies and trusts. Their fundraising ventures are selfless, inspiring, sometimes bizarre and often courageous! We would like to say a huge thank you to everyone who has donated time, money and effort to support our work again this year. Every single pound raised for Kidney Research UK is valuable to us. Here is what some of your donations have achieved this year... - £15 funded one hour’s vital research by a scientist or doctor (70% of your donations go towards research work). - £30 paid for the training materials for one Peer Educator (ABLE project) - £100 helped with travel costs for parents to visit their child following hospital treatment for kidney disease - £750 is the cost of running the Kidney Health Information service for one week - £1,000 helped provide a shower for a patient on CAPD, a form of peritoneal dialysis which requires a catheter and means that a shower is more hygienic than taking a bath. - £1,500 enabled another patient to take a driving instructor course, and thus find work which fitted in with his hospital dialysis treatment. - £2,800 paid for a stair lift to maintain a patient’s independence, and allow him to get to his own bed and the family bathroom, after dialysis left him weak, with decreased mobility, and sleeping downstairs.

Treatment for renal failure in the UK costs 2% of the total NHS budget…


RAISING FUNDS | A N N UA L R E V I E W 2 0 0 5

30

… and here are just a handful of the very many ways you have helped us over this last year: Trekking the high Arctic “Usually I pick somewhere a lot warmer for a trip!” admitted Natasha Ridewood, as she headed off in February for a ten-day trek across the high Arctic’s Great Bear Lake. Accompanied by seven other intrepid explorers, the 31-year-old recruitment consultant from Nottingham fought her way across 125 miles of frozen lake in temperatures dipping as low as minus-50 degrees, in order to raise awareness and funds to fight kidney disease. Natasha’s sister, Katie, had spent five years on dialysis with a rare kidney disorder, before receiving a transplant from their mother. Now Natasha’s trip has raised over £6,000 to help others in a similar situation.“We were the first expedition ever to make a foot-crossing of the Great Bear Lake. The environment was extremely hostile – even our eyelashes froze together – and there were some very scary moments, but the beautiful sunrises and amazing vistas made it the trip of a lifetime. And it was very exciting to set a new record too!”

Partying in the paddock! September 2004 saw the first Party in the Paddock – an evening of fun and fundraising organised by ex-Whitesnake guitarist Bernie Marsden, his wife Fran, Duncan & Jeannie Gadsen and Carol Bell. An all-star line-up of musicians performed at the gig, and Les Battersby from Coronation Street also ran an auction – extracting £9,000 from the 500-strong audience.

Above:“The Guitar Squad: Bernie Marsden, Micky Moody, David Levy & Geoff Whitehorn

We were one of the two charities chosen to be supported by the event, and are delighted that we will also be benefiting from the 2005 event.“It was only supposed to be a one-off, but it was such a success and everyone was asking when the next one would be!” explained Fran.“We found that a lot more people are affected by renal disease than you realise, yet kidney organisations do not get the same high profile as other charities. Hopefully this made a difference– there was lots of merchandising, and as well as a page in the programme about kidney research, we also had a page encouraging people to become organ donors.”


RAISING FUNDS | A N N UA L R E V I E W 2 0 0 5

31

A presence in the heart of the community When a fire destroyed our charity shop in Birtley (Tyne and Wear) last year, we were left with a gutted building and no stock. Local support, however, was fantastic, and with a lot of hard work and many donations of quality new stock, we opened again on 14 January - just four months later. Since then, thanks to the opportunity it gave us to refurbish, our income has increased dramatically. “Five years ago we had five shops in the UK – today there are eleven,” says Peter Storey, our Head of Community Fundraising.“They’re extremely profitable in retail terms, making a significant contribution to our research funding, but they are also important to us because they are the face of the charity in the high street, raising awareness of our work and showing the public what we are all about. Clean, bright and professional, with friendly and helpful staff, I am proud of the way in which they represent the charity.”

Mayoress of Gateshead Council, Mrs Jen Mitchinson, with staff and volunteers at the reopening of our Birtley shop in January this year.

(We are sad to have lost our “Exchange” for designer clothing in London, however, and would be delighted to know of a new site which we might be able to rent.)

An MBE for supporting good causes Over the years Edith Murphy built up a number of successful businesses which allowed her to help numerous charities and other good causes. Her support for our work was tireless: not only did she donate over £780,000 but she often attended meetings and helped shape the course of the projects with which she was involved. We have not mentioned Edith before, as she was reticent about recognition, but we could not allow another year to go by without publicly making known our heartfelt thanks. We were delighted to hear that Edith was awarded the MBE in this year’s New Year’s Honours list, which she received from the Queen at Buckingham Palace on 22 June. Sadly, Edith passed away in October 2005. We are grateful for all her help over the years and her input will be sorely missed. Our thoughts are with her family.

Why not get your company to “adopt” us for a year? Having chosen Kidney Research UK as their adopted charity this year, all 72 stores of the popular soft furnishings company, Dunelm Mill, have thrown themselves into fundraising. And their results have been truly spectacular: through a variety of events – including parachute jumps and a store vs. store football match – they have raised over £126,000. “By donating this money we are able to help Kidney Research UK to carry on the outstanding work it does in the community and to continue its valuable research into finding a cure for kidney disease,” said Tim Slade, the company’s Retail Services Manager.“The organisation is such a worthy cause, and we are pleased to be able to help out in whatever way we can.”


RAISING FUNDS | A N N UA L R E V I E W 2 0 0 5

32

Where there’s a will Can you think of a better way to celebrate your own life, than to help give future generations the chance of a longer and better life? For Kidney Research UK - as with most charities - bequests make an absolutely crucial difference to what we can achieve.This year, 55% of our income came from legacies; this was an exceptionally high figure, but even in an average year, the figure is about 40%.Without the kindness and foresight of those who leave us a gift in their will, an enormous amount of what we do each year would be impossible. Please remember us in your will – it can make a real difference. If you are thinking of writing a new will and leaving money to Kidney Research UK, or changing an existing one, we can offer advice. Please contact us on 01733 704656 or email legacies@kidneyresearchuk.org

Making major advances – thanks to major corporations Each year, funding from large corporations is pivotal to the number and size of our projects. Without the Big Lottery, for example, we may never have got our pioneering ABLE programme off the ground. In 2002 they awarded us a three-year grant to fund a project manager for the programme, and since then they have put in almost £450,000 towards an investigation on attitudes to organ donation and a study on understanding diabetes (see p10). This support of two complementary aspects – funding key clinical studies and supporting our community awareness-raising work – is unique in its field. “More than 7,000 people die of kidney disease in the UK each year,” says its Chief Executive, Stephen Dunmore.“The Big Lottery Fund is very proud to award research grants like this, which are helping those most in need."

What goes around… Pamela Currie began supporting people with renal disease after one of her colleagues was diagnosed with kidney failure. For years, she has helped in various ways, including selling tickets among her friends and contacts for our Lottery game – so it was quite a shock for her, having bought the last unsold ticket of a book herself, to discover she had won a trip for two to Rome! Pamela does not see her volunteer work as anything special, but we do. For it is thanks to people like her that we are able to continue funding research into life-threatening illnesses.“Kidney disease can affect anybody,” she observes,“so it is up to us all to help find a solution.”


RAISING FUNDS | A N N UA L R E V I E W 2 0 0 5

Golfing with the pros World-renowned golfers from Australia, New Zealand, the USA and Jamaica gathered in Cornwall this July to take part in an international Seniors Pro-Am tournament in aid of kidney research. Each of the 15 professionals joined forces with three amateur golfers, and the teams competed for various smaller prizes throughout the day, as well as to win the overall competition. Prizes included a fabulous golfing break for the three winning team members from Ivybridge, who won with the help of South African pro Neville Clarke. Sports commentator Bob Hall also played and gave the after-dinner speech.

Photograph: Apex Corporate

33

Delroy Cambridge, who holds 13th on the Senior Order of Merit, hands out coaching advice to his team before the tournament

Excellent coverage was achieved in golfing publications, the local press and radio, and we are hugely grateful to the Brend family who sponsored the event at their Carlyon Bay Hotel, and who have given us such enormous support.

Karting for kidney care If you’re a fan of Formula One, the annual Johnny Herbert Karting Challenge may well already be on your calendar! On 28 November, the Fan Club organised its tenth fundraising karting extravaganza, in which 24 teams competed hotly to win the three-hour endurance race. Johnny Herbert himself had a team, as did fellow Formula One driver, Jenson Button. But it was Jenson’s fiancée, Louise Griffiths, whose all-girl team (the Penelope Pitstops) passed the chequered flag first – much to the chagrin of the professional racing drivers! Sky TV and Granada Television were also there, bringing further publicity to our work, and in total the spectacular event raised over £30,000.

A familiar furry face joins the team Everyone who knows the ‘Funday Times’ section of the Sunday Times will recognise Newton’s Law – the comic strip about the bear with a witty aside for every occasion. And this year we were given permission to use the popular bear to help raising awareness of kidney disease. Newton has already thrown himself enthusiastically into a variety of campaigns and events, but he reached his widest audience at the “Stitch 05” event in Olympia (31 March – 3 April). To support our work, Cross Stitch Weekly produced a pattern with Newton’s image, which it gave out for free. Keen stitchers then completed the patterns and sent them to the magazine or brought them along to the conference, where they were all stitched together into quilts for children’s renal units around the UK. The response was amazing; we expected about eight quilts, but the final result was nearer 50!


RAISING FUNDS | A N N UA L R E V I E W 2 0 0 5

34

Running up some funding for kidney research The London Marathon has become a much-loved national institution, and with hundreds of thousands of people watching it on television or along the route, it is another wonderful way of broadcasting our name and message, as well as raising funds for kidney research. This year, we had a record 91 people running in our name - 30 of whom were 'own place', which just illustrates the level of commitment people have to our cause. And at the Great North Run we had a magnificent 321 people running for us. Will Woodman (pictured) was among our runners – at both events. In fact, not content with doing two runs, he also took part in the New York Marathon in November. In total he raised over £5,000 for Kidney Research UK. “My grandfather died of polycystic kidney disease, and my father and I both have it too, so it is a subject close to my heart and I wanted to support research into finding a cure. I wanted to find something which was challenging to both the body and the brain, and I think that mentally it was the hardest thing I’ve done. But my mates and I are keen to do some more things to raise further funds – maybe the marathons in Chicago or Paris…!”

Aiming high “Our daughter’s kidneys failed when she was just nine, and she received a transplant aged ten. But Alex has never let this inhibit her lifestyle and she is now your typical teenager – with attitude! And last summer she decided that her Mum and I should climb Ben Nevis to raise more funds for Kidney Research UK. “The night before the climb, 14-year-old Alex stood up in front of the 200 climbers to tell her story and say how grateful she was to all those climbing for kidney research. The applause afterwards brought tears to my eyes, and lots of people asked her for a Donor Card. “The next day we started walking at 7am; we’d reached the summit by midday and were back at the bottom by 4pm. It was a long day, but wonderful, and no one was more thrilled than Alex that her parents had raised £1,200 to help other people suffering from kidney disease. We’ve had many highs and lows over the last few years with Alex – this was definitely one of the high points!” Graeme Walker, Newcastle

Thank you! Our heartfelt thanks to these and everyone else who has supported us this year with their individual, group or corporate fundraising. If the stories have inspired you, and you would like to help fundraise – either with a one-off event or on a regular basis – we would love to hear from you. We welcome any initiative which helps raise awareness or funds for Kidney Research UK. No matter how small a venture or idea may seem to you, it could make a huge difference to someone with kidney disease.


A N N UA L R E V I E W 2 0 0 5

35

Introducing our Community Fundraising Managers

West Scotland, Cumbria and Northumberland Liz McGuiness

Scott Webster

West and South Yorkshire Louise Holland Cleveland, North East and South Yorkshire David Thorne Herefordshire, Shropshire, Staffordshire, West Midlands and Warwickshire, Emma Dowler

Liz McGuiness

Derbyshire, Leicestershire, Nottinghamshire, Rutland and Warwickshire Eileen Bagguley Cambridgeshire, Lincolnshire, Norfolk and Suffolk Dawn Caplin East Sussex, Kent, London, Middlesex, Surrey and West Sussex Helen Haynes (née Philpott)

Louise Holland

David Thorne

Carol Bonham

Avon, Cornwall, Devon, Dorset, Gloucestershire, Hampshire, Somerset, Wiltshire, Clare Dowell Bedfordshire, Berkshire, Buckinghamshire, Essex, Hertfordshire, Northamptonshire and Oxfordshire Elizabeth Wright

Eileen Bagguley Emma Dowler

North and East Scotland Scott Webster Lancashire, Merseyside, Greater Manchester and Cheshire Carol Bonham

Elizabeth Dawn Wright Caplin

Helen Haynes (née Philpott)

Clare Dowell

From white water rafting in Wales, marathon running in New York or cycling in Vietnam, to a rather more stately concert, quiz or walk, we have something for anybody who would like to help raise money for Kidney Research UK’s vital work. Our Community Fundraisers are there to help you! If you would like to find out more about what’s going on in your area – or make a suggestion yourself – please call us on 01733 704650, and we will put you in touch with your local Fundraiser.


A N N UA L R E V I E W 2 0 0 5

36

Financial Report 2004-2005 It gives me great pleasure to be able to report on another very successful financial year for Kidney Research UK. We have built on the substantial progress made last year, and there are a number of impressive further achievements. Following the dramatic rise of 39% achieved last year, total income fell by 20% to £4.8m this year. However if legacy income (an area that can fluctuate) is excluded our income from other sources remained equal to that achieved last year; this was achieved with a 20% reduction in our fundraising costs. All of which means that our operating performance is still strong this year, with net incoming resources of £3.6m. Kidney Research UK has also benefited from investment gains of £573,000. This continues to reverse the losses experienced in recent years during the downturn of the stock market, and when added to our operating performance, means we generated a total consolidated income of £7.27m this year. We have therefore been able to achieve a further increase in charitable expenditure to £5.02m. The importance of our reserves remains evident from our experience over recent years. Holding our reserves has enabled us to maintain our level of charitable expenditure each year, despite the turbulent stock market and sources of income which can, at times, be difficult to predict. In this way, the reserves have proved crucial to the important work in which we are involved, allowing consistency and continuity from year to year. There is further work to be done, in order to rebuild reserves fully to the levels we need, but this year represents another significant step in the right direction. I am particularly pleased to report that our trading subsidiary, Kidney Research Enterprises Ltd, has had an excellent year, generating a net profit of £196,000 – an improvement of 42% on the previous year. Turnover increased by 7.5% to 2.7m. A large proportion of this increased profitability has been due to improved operating performance. A covenant of £195,000 has been made to Kidney Research UK, as the company continues to contribute to our work. The Financial Report on the following pages gives Kidney Research UK’s summarised accounts for the year ended 31 March 2005, and includes the Auditors’ Statement to the Trustees. Copies of the full statutory accounts are available on request from the address shown in the Trustees’ statement. The following financial statements are shown on a consolidated basis for the group.


A N N UA L R E V I E W 2 0 0 5

37

Independent Auditor’s statement to the members of Kidney Research UK Limited We have examined the summary financial statements of Kidney Research UK Limited. This report is made solely to the company's members, as a body, in accordance with Section 251 of the Companies Act 1985. Our audit work has been undertaken so that we might state to the company's members those matters we are required to state to them in an auditors' report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the company and the company's members as a body, for our audit work, for this report, or for the opinions we have formed.

Respective responsibilities of Members of Committee and auditors The Members of Committee, who are also the trustees and the directors of Kidney Research UK Limited for the purpose of company law, are responsible for preparing the summarised Annual Report in accordance with applicable law. Our responsibility is to report to you our opinion on the consistency of the summary financial statement within the summarised Annual Report with the full annual accounts and Trustees' Report, and its compliance with the relevant requirements of section 251 of the Companies Act 1985 and the regulations made thereunder. We also read the other information contained in the summarised Annual Report and consider the implication for our report if we become aware of any apparent misstatements or material inconsistencies with the summary financial statement.

Basis of opinion We conducted our work in accordance with Bulletin 1999/6 ‘The auditors’ statement on the summary financial statement’ issued by the Auditing Practices Board for use in the United Kingdom.

Opinion In our opinion the summary financial statement is consistent with the full annual accounts and Trustees’ Report of Kidney Research UK Limited for the year ended 31 March 2005 and complies with the applicable requirements of Section 251 of the Companies Act, and the regulations made thereunder. Hazlems Fenton Registered Auditor Chartered Accountants Palladium House 1-4 Argyll Street London W1F 7LD Dated:- 15 December 2005


SUMMARY FINANCIAL STATEMENT | A N N UA L R E V I E W 2 0 0 5

38

Balance Sheets as at 31st March 2005 Group 2005 £

2004 £

Company 2005 £

2004 £

298,268 4,654,023 ________ 4,952,291 ________

350,930 3,489,160 ________ 3,840,090 ________

141,757 4,804,023 ________ 4,945,780 ________

182,210 3,639,160 ________ 3,821,370 ________

85,024 453,658 2,049,112 415,165 ________ 3,002,959

109,104 587,077 2,807,426 553,690 ________ 4,057,297

331,404 2,049,112 396,562 ________ 2,777,078

496,592 2,807,426 507,259 ________ 3,811,277

(4,115,509) ________ (1,112,550) ________

(4,013,828) ________ 43,469 ________

(3,928,065) ________ (1,150,987) ________

(3,793,874) ________ 17,403 ________

3,839,741

3,883,559

3,794,793

3,838,773

(997,491) ________ 2,842,250 ________

(879,663) ________ 3,003,896 ________

(997,491) ________ 2,797,302 ________

(879,663) ________ 2,959,110 ________

670,652

150,000

670,652

150,000

2,171,598

2,853,896

2,126,650

2,809,110

________ 2,842,250 ________

________ 3,003,896 ________

________ 2,797,302 ________

________ 2,959,110 ________

Fixed assets Tangible assets Investments

Current assets Stocks Debtors Investments Cash at bank and in hand

Creditors: amounts falling due within one year Net current (liabilities)/assets Total assets less current liabilities Creditors: amounts falling due after more than one year Net assets

Income funds Restricted funds

Unrestricted funds (including revaluation reserve of £540,676 (2004: £102,069))

None of the members of Committee (or any persons connected with them) received any remuneration during the period. The accounts were approved by the Board on 15th December 2005

Prof C D Pusey DSc FRCP FRCPath FMedSci

Mr R Caldecott


SUMMARY FINANCIAL STATEMENT | A N N UA L R E V I E W 2 0 0 5

39

Consolidated Statement of Financial Activities For the period ended 31st March 2005

Incoming resources Donations and gifts Activities for generating funds Investment income and interest Other incoming resources Total incoming resources Resources expended Costs of generating funds Fundraising and publicity costs Investment manager's fees

Net incoming resources available Charitable expenditure Grants payable Education and information Patient welfare Irrecoverable VAT Support costs Management and administration Total charitable expenditure Total resources expended Net (outgoing)/incoming resources Gains on investment assets Net movement in funds Fund balances at 6 April 2004 Fund balances at 31 March 2005

Unrestricted funds £

Restricted funds £

Total 2005 £

Total 2004 £

3,499,640 2,684,866 245,746 2,585 ________ 6,432,837 ________

837,676 ________ 837,676 ________

3,499,640 2,684,866 245,746 840,261 ________ 7,270,513 ________

5,463,108 2,496,342 261,751 61,324 ________ 8,282,525 ________

2,948,621 38,914 ________ 2,987,535 ________ 3,445,302 ________

________ ________ 837,676 ________

2,948,621 38,914 ________ 2,987,535 ________ 4,282,978 ________

3,109,550 33,459 ________ 3,143,009 ________ 5,139,516 ________

1,931,703 948,764 209,309 95,819 299,474 1,215,847 ________ 4,700,916 ________ 7,688,451 ________ (1,255,614)

317,024 ________ 317,024 ________ 317,024 ________ 520,652

2,248,727 948,764 209,309 95,819 299,474 1,215,847 ________ 5,017,940 ________ 8,005,475 ________ (734,962)

1,466,503 1,193,611 354,536 117,794 304,525 1,090,640 ________ 4,527,609 ________ 7,670,618 ________ 611,907

573,317 ________ (682,297)

________ 520,652

573,317 ________ (161,645)

1,088,586 ________ 1,700,493

2,853,895 ________ 2,171,598 ________ ________

150,000 ________ 670,652 ________ ________

3,003,895 ________ 2,842,250 ________ ________

1,303,403 ________ 3,003,896 ________ ________


A N N UA L R E V I E W 2 0 0 5

40

Who’s Who Presidents of Kidney Research UK Lord Thomas Chandos of Aldershot National President Lord Davies of Coity President for Wales Lord Hughes of Woodside President for Scotland Professor David NS Kerr CBE FRCP Vice President Professor Andy J Rees MSc FRCP Vice President

Trustees Professor Charles D Pusey DSc FRCP FRCPath FMedSci Chairman Emeritus Professor Graham Badley BA PGCE Adv.Dip.Ed. M.Ed. PhD Mr Ali Bakran BSc MBChB FRCS(Ed) FRCS(Eng) (retired 2006)

Chris Thomas ACA (resigned August 2005) Secretary and Finance Director Nick Turkentine (resigned February 2006) Head of Marketing and Communications Anne-Marie McCarthy FCA (appointed February 2006) Secretary and Finance Director

Research Grants Committee (as of March 2006) Professor Peter Mathieson PhD FRCP Chairman Mrs Elaine Davies Secretary Dr Daniel M Altmann PhD Dr Colin Baigent BA MSc BM BCh Professor HT Cook MRCP FRCPath Professor John Feehally MA DM FRCP Professor Peter Friend MD FRCS Dr David Jayne MD FRCP

Mrs Diana Blass

Dr Fiona Karet PhD FRCP FMedSci

Professor J Andrew Bradley MB ChB PhD FRCS (Glasgow & England) (joined March 2005)

Dr David Marples MA D.Phil B.M.B.Ch

Dr John Bradley (BM BS DM FRCP (retired December 2004)

Dr Paul Roderick FRCP FFPHM MSc

Mr Rupert Caldecott Emeritus Professor J Stewart Cameron CBE MD BSc FRCP Revd. Dr Judy Craig Peck MBBS, MRCGP, DATS Professor Alexander M Davison RD MD FRCP Professor Neil Turner PhD FRCP Professor Kathryn Wood DPhill BSC (retired 2006)

Senior Management Group Charles Kernahan Chief Executive Michael Nation Director of Corporate Development Peter Storey MBA MInstF (Cert) Head of Individuals Fundraising

Professor John Mullins BSc PhD

Professor Caroline Savage PhD FRCP FMedSci Dr Kenneth GC Smith MA (Cantab) BmedSc MBBS PhD (Melb) FRCPA FRCP Dr C Mark Taylor FRCP FRCPCH DCH Dr Charles RV Tomson BA BM Ch MRCP DM FRCP Dr Paul Winyard MRCP PhD


A N N UA L R E V I E W 2 0 0 5

41

Kidney Patient Support Grants Committee (as of March 2006) Dr James F Medcalf Chairman Mrs Elaine Davies Secretary Jean Aplin Judith Argles MA CQSW Diploma Social Studies Wendy Clark, Senior Clinical Nurse, BSc Nursing & Midwifery Raymond Mackey Kim Russell

Agnes McLellan Dr Ian Ramage Dr Stuart Rodger Janet Scott George Stenhouse Medical Advisors (as of March 2006) Dr Chris Winearls DPhil MB ChB Senior Medical Advisor Mr David Cranston MBChB DPhil FRCS Professor Simon Davies MD FRCP Dr C J Eaton MB BS LRCP MRCS GP

National Patient Advisory Group

Dr Richard J Fluck MA MRCP

Mr Jeremy Nicholls Chairman

Professor Mike Nicholson MD FRCS

Ms Jacquie Fraser Vice Chair

Professor Tim H J Goodship BSc MD FRCP

Dr Stephen Chan Secretary

Dr Alan Watson FRCP(Ed) FRCPCH

Professor Graham Badley

Mr Ali Bakran BSc MBChB FRCS(Ed) FRCS(Eng)

Mrs Diana Blass

Marianne Vennegoor SRD Special Renal Dietician

Mrs Chris Howard Dr Rosemary Poutney

Dr David Goldsmith MA FRCP

Dr Chandra Mistry MD FRCP

Mrs Betty Hudd Special Renal Dietician

Mr Ivan Rappaport

Mr Roger Kockelbergh DM FRCS(Ed) FRCS(Urol)

Joined in 2005:

Dr Charles Newstead MB BS MRCP(UK) FRCP

George Graham

Dr Lesley Rees MD FRCP FRCPCH

Brian Marchant

Dr John Bradley BM BS DM FRCP

Oliver Pearcey

Scottish Patient Advisory Group Professor Alexander M Davison RD MD FRCP Chairman Maureen Buchanan Jane Bryce Lesley Kelly Tracey McGregor


A N N UA L R E V I E W 2 0 0 5

42

Special thanks... As you will see from this Annual Review, your support makes a tremendous difference on every level. We could not even begin to name the countless individuals, volunteers and companies who have given us their time and financial support so generously over the past year, but our particular thanks do go to the following: 20th Century Fox

Genzyme

Roche

Advocate

Simon Gibson Charitable Trust

Royal Artillery Display Troop

Amgen Foundation

Go Ahead Group

Sandringham Estate

Astellas

Louise Goodman

Siemens Communications

Debbie Ball Associates

Steve Haigh and Larry Stone

Belvoir Equestrian Ride

Bob & Jane Herbert

South Asian Development Partnership

Ivor & Irene Best The Big Lottery Fund

Johnny Herbert – British Formula 1 driver

Bushey Hall Golf Club

Lady Hind Trust

Kate Sykes

Cargo Charities Fund

Homebase

Countryside Properties plc

Honda UK & their dealership network

The Constance Travis Charitable Trust

Crews Hill Golf Club (David Hide)

The Southgate family The Jessie Spencer Trust

Rory Tyger

Helena Jones

Vitabiotics

Jules Kuplinski

Vue Cinemas

Legal & General

Nina Wadia

Lloydspharmacy

Tony Ward

Lawrence McGinty – ITV Science & Medical Editor

Mrs Waterhouse Charitable Trust

Roy & Brenda Craig Carlisle Council

Masterfoods

Bill Williams

Robin Davies Trust

Mike Molart-Rogerson

Woolworths

Debenhams

The Edith Murphy Foundation

Department of Health

Anup Nahar

Colin and Amanda Wyatt (Sounds in the Ground)

Direct Rail Services(Carlisle) Parks

Norton Rose

Wyeth

Domino Pizza

NTL

Dunelm Mill Soft Furnishings Ltd

Wyke Green Golf Club (Scott Stewart)

Ocean Spray

Dunhill Medical Trust

Nick Owen – BBC newscaster

East Grinstead Rugby Football Club

Party in the Paddock ( Fran and Bernie Marsden)

Experian

R20 Ltd

The Thomas Farr Charitable Trust

Racing for Charity

Lady Fitzwalter Freemasons’ Grand Charity

Miss M B Reekie’s Charitable Trust

Garfield Weston Foundation

Regent Centre (Hamilton)

Cross Stitch Magazine The Dean of Peterborough, the Very Reverend Michael Bunker Jenson Button – British Formula 1 driver

James Whale – talkSPORT Radio

Yamaha


A N N UA L R E V I E W 2 0 0 5

43

...and finally our heartfelt, posthumous thanks to a life-long friend of our work, whom we sadly lost this year. Peter Mullen OBE worked with the National Kidney Research Fund from its foundation in 1961 until 1985, although he stayed involved right up until his death this year. Peter spent his early career with the RAF, serving during the Second World War, before moving to civil aviation with Aer Lingus. His time spent in industry was juggled with a successful rally driving career, before he took a ‘gamble’ and accepted his appointment by the Renal Association to launch The National Kidney Research Fund. In 1966, he was made Secretary of the charity, a role he held and carried out with great aplomb until his retirement in 1985 - but not before receiving an OBE in 1983 for his services to kidney research. He also spent 27 years as Treasurer of The Renal Association. Peter’s contribution to our work over the decades was invaluable. We will miss him and his cheery presence greatly.

ACKNOWLEDGEMENTS Written and edited by Cecilia Bromley-Martin Designed by Pencilfish We welcome comment on this year’s Annual Review, which should be sent to: Corporate Marketing Officer, Kidney Research UK, Kings Chambers, Priestgate, Peterborough PE1 1FG. Email: communications@kidneyresearchuk.org Registered office: Kings Chambers, Priestgate, Peterborough PE1 1FG Tel: 01733 704650. Fax: 01733 704690. All rights reserved. No part of this publication may be reproduced in any shape or form without the prior written permission of Kidney Research UK.


OUR VISION A WORLD FREE FROM KIDNEY DISEASE

ACHIEVING OUR VISION FUNDING RESEARCH – 70% OF OUR CHARITY EXPENDITURE RAISING AWARENESS – 20% OF OUR CHARITY EXPENDITURE CARING FOR PATIENTS – 10% OF OUR CHARITY EXPENDITURE

Kidney Research UK Kings Chambers Priestgate Peterborough PE1 1FG

www.kidneyresearchuk.org Registered charity no: 252892.


Kidney research UK Annual Review 2004/05