Kidney patient Sabina on her mental health
Page 8
True cost of kidney disease revealed
Page 4
How you can get involved and help kidney patients everywhere
Page 12
At the time I am writing to you, we are launching two new policy reports which lay the groundwork for a seismic shift in how kidney patients are diagnosed, monitored, treated and supported.
Kidney patient Sabina Saeed features on our Update front cover. She is one of the patients whose voices have been integral to our mental health report (see pages 8-9). Together with Centre for Mental Health we are showing decision makers evidence that good mental healthcare is a fundamental part of good kidney care, and that in too many areas it is lacking.
We all know money matters are key in Government decision making. And we are taking this fact firmly by the horns. Our second report reveals that kidney disease is a public health emergency that requires urgent action. Ignoring the increasing burden of kidney disease would be a catastrophic false economy.
Kidney disease is already costing the NHS £6.4 billion a year and this could grow to £10.9 billion in just ten years. Our health service is at serious risk of being overwhelmed, but we have outlined steps that can be taken to prevent this. Read more on pages 4-5.
Meanwhile we are very grateful to Nina Nannar for sharing her very personal account of the human cost of kidney disease, having recently lost her husband Steve (pages 6-7). Their story reminds us why change can’t come soon enough.
Thank you to the patients, clinicians and academic experts who have helped develop these reports; a clear rallying together of the kidney community. I urge you to join us in shouting from the rooftops to create change.
If you are thinking of joining Team Kidney, stories from our volunteers and fundraisers will inspire you (see pages 12-15). Thank you to all those who support, inform, guide and share with us – together we will end kidney disease.
Best wishes
Three innovative projects focused on improving dialysis have triumphed in our MedTech competition this year.
The winners will receive £25,000 each in funding from Kidney Research UK. They are also enrolled into a bespoke academy programme designed to help research teams understand intellectual property and marketing, giving their products the best chance of reaching patients.
Researchers at Keele University and the University of Bristol will develop training and other resources to support decision making processes for patients who may struggle to do so independently. Meanwhile, a team at Queen Mary University will develop wearable technology designed to monitor the condition of patients’ fistulas (the access points made by surgeons to create a large, robust blood vessel to connect to the haemodialysis machine).
And Edinburgh based company Javelo Health will create new safety lines for children on dialysis to protect the connection between the blood vessels and the dialysis machine, preventing them from being dislodged.
Kirsty Frearson, dialysis programme manager at Kidney Research UK said: “The projects we have chosen to fund will be highly beneficial and help drive forward our mission to transform treatments for all kidney patients.”
Kidney Research UK funded researchers at the University of Bristol have made a breakthrough that could prevent certain kidney patients progressing towards renal failure. The team have identified a new treatment pathway for patients with nephrotic syndrome where the cause is not known (idiopathic nephrotic syndrome or INS).
Sandra Currie, Chief executive
Registered charity no. 252892. Scottish charity no. SC039245.
The researchers knew that there might be one or more factors in the blood (a substance involved in a biological reaction) that cause the kidneys in INS patients to fail.
Using bags of plasma taken from dialysing INS patients, the team identified a link between a receptor (a molecular substance causing a specific effect in the cell) known as PAR-1 and the unknown factor, so blocking PAR-1 receptors using existing drugs could now be a viable option to treat the effects of the unknown factor.
Dr Carl May
The study is published in Kidney International
© Brendan Foster PhotographyWe’ll be hitting the road this summer to drive forward awareness of kidney disease, thanks to a new partnership with Silverstone Festival.
As Covid hit, together with other members of the Association of Medical Research Charities we sought support from Government to step in to address the massive impact of diverting funds and resources away from ongoing, vital research, to fighting the pandemic. So much work, development and potential had to go on hold. Work that could have improved kidney patients’ lives has been delayed by years, and our research community continues to play catch up today.
We are delighted to have been awarded £963,000 through the UK Government Covid Medical Research Charity Fund. We previously received support through this fund in 2021 and 2022, but this is by far the largest Government contribution to helping renal research move forward since the pandemic began.
Kidney Research UK has been selected to be the official charity partner for the 2023 festival, meaning we’ll be taking the message about the critical importance of kidneys and research to more than 100,000 festival goers over the August bank holiday weekend.
In addition to supporting important fundraising, the festival will highlight the work we’re doing to support those living with kidney disease and to accelerate the development of new and improved treatments.
The event will host the very best of historic motorsport and huge displays of classic cars, plus three nights of live music, and a packed programme of family fun.
A range of tickets are available, including camping options and this year’s festival will be particularly special with the celebrations of Silverstone’s 75th anniversary. To book, visit: www.silverstone.co.uk/events/ silverstone-festival
Young kidney patients at both Alder Hey Children’s Hospital in Liverpool and Glasgow Children’s Hospital are benefitting from a new book designed to help youngsters prepare for their kidney transplant. Designed in collaboration with publisher Get Better Books, the playful, interactive book shows what to expect in the lead up to and after their operation using a fun approach to alleviate anxiety.
The ‘My New Kidney’ book encourages recipients to colour, comment, write questions, draw and stick things in –creating important engagement so families can explore the transplant process together.
Kidney Research UK has joined with both Alder Hey Children’s Charity and the James Weir Foundation to fund bespoke versions of the books, which reflect the hospital in which the children receive their treatment.
It is only thanks to the continued generosity of our supporters that we can fund vital research now and into the future. Covid created exceptional circumstances, and we are glad the Government recognised the need to step in and help bridge the gap created by the pandemic. We have never had Government funding on this scale before and there are no guarantees that we ever will again.
Meanwhile, we are grateful to all the supporters who enable our vital work to continue long term.
Early in June, we published a major new report into the economics of kidney disease, setting out the picture in the UK now and what it might be in 2033. Leading academics, clinicians, data experts and patients were all involved, providing challenge and insight to ensure we achieved a robust and credible report.
Starting out with the simple working title of Health Economics Report, it eventually came to be titled KidneyDisease:AUKPublic HealthEmergency – for good reason. The report was independently produced by health economics specialists and the result sets out the numbers in stark terms, giving a glimpse into what the future could be unless action is taken.
Today in the UK, there are approximately 3.25 million people living with chronic kidney disease (CKD) stages 3-5, with a further 3.9 million estimated to have CKD stages 1-2. This is more than 10% of the UK population.
By 2033 it is predicted the number of people at stages 3-5 will rise to 3.9 million and a total of 7.61 million people will have some form of chronic kidney disease.
The report also found that kidney disease costs the UK economy £7 billion a year, with £6.4 billion being direct costs to the NHS – that’s 3.2% of NHS budgets. Using predictive modelling, we now know those numbers could reach as much as £13.9 billion and £10.9 billion respectively by 2033.
More than ever, this report makes clear the need for earlier detection and prevention.
One of the most striking findings was focused on dialysis.
Nobody can predict the future with absolute certainty, so our numbers are based on two models. One looks at NHS capacity for dialysis and the other looks ahead to the potential number of patients who might need it.
There are currently 30,000 patients on dialysis. The first model assumes NHS capacity will continue to grow at current rates, based on the actual number of patients treated over the last ten years. This would mean dialysis would be available to 33,845 people in 2033.
The second model estimates how many patients may need dialysis in 2033, based on the future number of patients and how quickly people progress through the stages of kidney disease.
This model shows the number of patients needing dialysis in 2033 could be as high as 142,920, meaning capacity would need to grow by almost 400%, just to meet demand.
Whilst predictions can’t be totally accurate, even if this number was realised by half, the growth in need would be huge.
All this may sound like there is little hope ahead, but our report clearly sets out four cost-effective, potential healthcare interventions that could save the lives of 10,000 kidney patients by 2033.
From earlier and improved diagnosis, to better CKD management and greater use of medications such SGLT-2 inhibitors, which are proven to slow progression of CKD, the first three interventions would all be cost effective for the NHS.
Finally, increased rates of pre-emptive transplantation, before patients need dialysis, would save the NHS money.
Sandra Currie, Kidney Research UK chief executive said: “The findings are shocking, but we now have the evidence we need to significantly raise the profile of kidney disease and drive overdue change, so that together, we can achieve our ambitions to avert this silent crisis, and for everyone to live free from kidney disease.”
Based on the findings of this report, we are now calling for CKD to be made a priority in government and NHS long-term health plans.
Despite the costs of treatment, in 2021/22 kidney disease received just 1.4% (£17.7 million) of relevant government research funding. We want to see this become at least £50 million a year and for prevention to be a clear priority.
We also want more tests for people at risk of kidney disease so fewer people reach kidney failure and we’re continuing work we’ve already started to call for the Scottish Government to publish a CKD action plan.
You can download full and summary versions of the report on our website –please share what you discover with your friends and family.
We’re holding an event to share our recommendations with MPs and Peers at Westminster on September 11, we need you to join us in ensuring your MP attends.
You can find out how to take our e-action and write to your MP on the website too. Visit www.kidneyresearchuk.org/ health-economic-report
Several industry partners sponsored the report because they recognise kidney disease is overlooked as a health condition and that by joining forces, we can present a powerful voice to make the case for change and drive collaboration so that patients receive better care and treatment options.
STAGE 1 Kidney damage with normal kidney function
STAGE 2 Kidney damage with mild loss of kidney function
STAGE 3a Mild to moderate loss of kidney function
STAGE 3b Moderate to severe loss of kidney function
STAGE 4 Severe loss of kidney function
STAGE 5 Kidney failure
Katherine Forbes, Kidney Research UK director of innovation and enterprise
said:
“Kidney disease is a public health emergency waiting in the wings. That’s why we’re building our support for those researchers and start-up companies who are developing research-led innovations and working with industry partners to help accelerate development of novel therapies, treatments and products to benefit patients sooner.”
Katherine ForbesNina Nannar is ITV’s arts editor. After the most difficult year of her life, we are deeply touched that she has chosen to share her memories of her husband Steve with us, to show you the difference your gifts make.
I’m a Kidney Research UK supporter, like you. You may remember that in 2020 I told my story in Update magazine about my husband Steve and his two kidney transplants. Sadly, I lost Steve last year. I’d like to share what happened, because sharing stories is what I do for a living, and I know what power stories have to change lives.
Steve was born with reflux – a problem with a valve in the ureter that allows urine to travel the wrong way from the bladder back into the kidney. In his teens, Steve collapsed. His kidney had completely packed in and the other was barely functioning. He had to begin dialysis treatment immediately.
After three and a half years on dialysis, Steve got a phone call from his doctor who said, “How’d you fancy a kidney?” When I met Steve, that astonishing kidney was still going. It lasted for 30 years.
The truth is, dialysis is a slog. Even when it’s not a slog, it’s a slog.
Coming so close to death informed the rest of Steve’s life. He was so happy to have every single day. Steve meditated daily and loved the simple things in life. He was a very amazing, gentle person.
Steve was back on dialysis in 2016 for nearly two years before he got his second
transplant. He had peritoneal dialysis, where they put a tube into your stomach. It meant he could dialyse in our home.
Steve dialysed four times every day. The truth is, dialysis is a slog. Even when it’s not a slog, it’s a slog. It’s a phenomenal process, but it’s invasive and it’s quite unpleasant.
After his second transplant, regaining his freedom meant we could go abroad for the first time in ages. We didn’t know it then, but it would be our last holiday together.
The following year, Covid-19 arrived. For Steve, this meant he was extremely vulnerable. Even though it was an awful, frightening time, it meant we got to spend all that extra time together. We will always have that year in the sunshine, in the back garden, keeping Steve safe.
Among the many medications that Steve had to take every day was an anti-rejection medication. One of the side effects is an increased risk of skin cancer. Every year, Steve had to get his back checked. Often, he’d have to have a few moles burned off his back, in case they turned nasty. But just before Steve’s last Christmas in 2021 the lumps had changed. Steve had surgery to have them removed and this time, there were cancer cells. And then a lump popped up on his ear too. They had to cut a bit off his ear. And then there was a lump on his neck.
Unfortunately, the cancer cells spread, and Steve’s ear had to be removed the day after his 60th birthday. Typically, Steve was upbeat about the whole thing. He said, “The surgeon told me they’ve got these prosthetic ears they can find. And I’ll have a hearing aid fitted in.” So he was going online and… we were effectively shopping for ears. It was always that way with him, onwards and upwards.
But Steve’s health deteriorated. In April 2022, he received radiotherapy, but the cancer continued to spread.
The consultant pulled me aside and she just said, “I’m sorry, we think he’s dying.” And I was like... just falling off the chair saying, “What?” I couldn’t believe it. “This is Steve Ronson. He’s had two kidney transplants. He’s everyone’s superman.”
I’d first connected with Kidney Research UK in 2019. Steve and I did several fundraising events, including one with Andy Cole, the Manchester United footballer. He’d had a transplant the year before Steve.
I think Andy was having quite a hard time psychologically. He was obviously a superhero, and Steve was Mr Positive. Steve would speak to him on the phone and try to lift him up. I’d hear him saying, “All right, this is what you should do, mate. Yeah, I know mate. It’s tough mate.”
Steve would keep up with news of all the latest research. He’d tell me, “They’ve developed this new drug that’s much kinder and doesn’t have skin cancer as a side effect. So maybe I can move on to that.” Steve was very positive and optimistic because the breakthroughs that were coming were amazing.
I think Steve would be so proud that I’m continuing to support Kidney Research UK, doing what I can to help, to share his story. I think it’s a perfect legacy for him. Steve’s big hope would be that because of new breakthroughs in kidney research, the ending for him wouldn’t have to be the ending for other people in the future.
We’re so grateful to Nina for being so open and for supporting our latest fundraising campaign. To read Steve and Nina’s story in full, please visit: www.kidneyresearchuk.org/steve
My daughter and I were with him when he went. We played his favourite songs. It was about as gentle and as loving a farewell as you could have.
Improving mental health provision for kidney patients is vital. Thanks to funding from the Andy Cole Fund, we have published our new report, ‘Addressing the mental health challenges of life with kidney disease: The case for change’.
Last year we received an overwhelming response to the survey we ran to gauge how kidney patients felt about their mental health and the support available. Supporters took up the cause and emailed politicians to address the lack of provision, shining a vital light on this fundamental issue.
In a tough political landscape, it is more important than ever to present decision makers with a solid, evidence-based case for change. For the past year we have been working with Centre for Mental Health, which exists to build research evidence to create fairer mental health policy.
We commissioned Centre for Mental Health to produce a report exploring the mental health needs of people living with chronic kidney disease. They reviewed over 200 academic papers and spoke to people living with kidney disease, family members and healthcare professionals about their experiences. The report was launched in May and made clear recommendations.
• Investment into improved, tailored mental health support for kidney patients, using a stepped model of care (meaning the nature of the support offered becomes more specialised depending on the individual’s level of need).
• Renal treatment service providers to ensure all staff are trained, supported and supervised in routinely assessing patients’ mental health, offering appropriate support, rapid referral where necessary and asking patients regularly about the quality of support they receive.
• Government to invest more funding into research in kidney disease and mental health to enable the ongoing development of services.
The report confirmed that kidney disease and its treatments place an enormous burden on kidney patients’ mental health – but the right mental health support helps patients stay physically and emotionally well for longer. This is something beauty therapist and kidney transplant recipient Sabina Saeed firmly believes.
Sabina was just five months old when her infected right kidney was removed, but she was in and out of hospital throughout her childhood.
“I was bullied at school because of my condition and I felt so isolated and alone,” she says. “So I think counselling would be a great help.”
The report found that kidney patients need to access appropriate mental health support at the right time, delivered by a professional who understands kidney disease and the rollercoaster often associated with its treatment.
Timeliness of treatment was key to Sabina’s mental health recovery. When she was 20 her mother donated a kidney but it began to deteriorate and following
a life-threatening seizure in 2016, Sabina started dialysis. It was then that she was offered mental health support for the very first time.
“My doctors told me I needed someone to talk to because I’d get really down,” says Sabina, now 42. “I’d seen everyone around me moving on with their lives – marrying, holidaying, having children –but my life had just stopped. It was tough.
“Being on dialysis is exhausting. It brings you down. It’s heartbreaking. You’re living through a machine, sometimes on a daily basis. When I first started dialysis I was so tired I used to pass out.”
Sabina saw her psychologist once every three weeks for just over two years and says the sessions made her feel she was less of a burden on her loved ones.
“Sometimes it’s easier to speak to a complete stranger,” she says. “Seeing a therapist allowed me a chance to just talk and let it out – or on some days, cry my eyes out.”
Sabina’s experience of receiving regular support is something that all patients should benefit from, says Alison Railton, head of policy and external affairs at Kidney Research UK.
“We know most renal care is predominantly focused on physical health and many people are left unsupported, in poor mental health. Patients shouldn’t have to hit rock bottom before they are offered support – it is far harder to climb back up. Change is urgently needed and with the clear recommendations and compelling evidence within this report, we are in the strongest position to make that change happen.”
We are sharing our report with Ministers and key decision makers at the top of the NHS. You can also play your part. By sharing the report with your health professionals, even your local politicians, you can help ensure the recommendations are heard. Read the report in full on our website: www.kidneyresearchuk.org/mentalhealth-report
This report is close to our ambassador, footballing legend Andy Cole’s heart. Having experienced the darkest of times in his own kidney journey, improving kidney patients’ mental health through research is one of the founding principles of the Andy Cole Fund. We are hugely grateful to those who have supported the Fund and enabled this work to happen.
Sometimes it’s easier to speak to a complete stranger. Seeing a therapist allowed me a chance to just talk and let it out – or on some days, cry my eyes out.
Sabina Saeed
Thanks to you, our supporters, we’ve pledged to fund a number of new projects in the last few months. Here’s just a selection, with thoughts from our readers’ panel about the difference they will make.
As kidney function declines patients may need kidney replacement therapy. This either involves dialysis, using a machine to clean the blood, or a kidney transplant. Finding a suitable kidney for transplant can be a slow process, and children are often on dialysis for long periods of time. Central venous lines (CVLs) are tubes that are inserted into a vein and left in to allow access to blood for dialysis. However, so far, the CVLs do not work well in children and patients often require multiple lines to be replaced. Claudio thinks that it is now time to rethink the CVL designs, putting children and their features at the centre of innovation in this field.
Claudio and his team want to use engineering software, computer analyses and experiments in the lab to redesign CVLs specifically for use in children. They will adapt their design to be better suited to children; this project aims to reduce complications, improving the experience of being on dialysis.
CVLs that have been designed specifically for children could lead to dialysis that is safer and more effective. Importantly, children will also likely spend less time in hospital due to complications.
After having many complications with my son whilst on dialysis, including many infections and being told his line may have to be removed and a new one inserted, I feel this new research may help other children avoid similar issues and improve the dialysis journey. Toris Amos (parent
The Covid-19 pandemic has disrupted healthcare services in the UK, raising important questions about how well chronic kidney disease (CKD) has been detected, monitored and managed during this difficult period. A missed CKD diagnosis is associated with worse health outcomes, but we don’t yet know which patients are at greatest risk of being missed.
Medical records from patients registered with GP surgeries contain details of diagnosis, treatments and tests. By combining healthcare information from large groups of patients, without any details included that could identify an individual, Dr Stewart will look for important trends and patterns in how CKD is diagnosed and managed in different patient groups.
Dr Stewart’s work will help us to understand how the Covid-19 pandemic has affected the health and care of people living with CKD, and why some people are missed. The information from this study will help us to understand what groups of patients are most likely to have missed out on early diagnosis, design ways of helping patients now and support more equal access to healthcare in future.
This important research into the effects of Covid-19 will hopefully highlight the detrimental effects and the problems of loneliness that the pandemic brought to kidney patients, along with the late detection of progressive kidney disease.
Helen Rogerson (currently on peritoneal dialysis)of a young kidney patient) GP Dr Stuart Stewart has been awarded a Kidney Research UK grant of £250,000.
Dr Donald Ward from the University of Manchester is supported by a Kidney Research UK grant of £245,000.
Small glands in our neck, called parathyroid glands, release parathyroid hormone (PTH) to control how much calcium is in our blood and bones. In patients with chronic kidney disease (CKD) too much PTH is released, leading to bone loss and hardening of blood vessels. Parathyroid glands contain a calcium-sensing receptor (CaR) that controls PTH secretion, however, in CKD the receptor does not work properly. Donald and his team think that the high levels of phosphate in the blood that can occur in CKD may cause problems with the CaR.
Donald wants to ensure that the parathyroid gland releases less PTH. There are drugs available that lower phosphate, but they don’t stop excess PTH release. Donald will look at treatments that act directly on the receptor, rather than lowering the level of phosphate in the blood.
By understanding how phosphate increases PTH release we can better target our search for improved treatments to avoid bone loss and blood vessel stiffening in CKD. Donald and his team hope that this will lead to important improvements in quality of life and life expectancy for CKD patients.
PKD is a genetic disease that causes fluid-filled cysts to grow within the kidney. Currently available medications can slow progression, but a better understanding of how the disease develops could lead to more effective treatments.
The use of ‘kidney organoids’ (miniature, simplified versions of kidneys that can be grown in the lab) offers an improved way of studying human kidneys compared with more traditional approaches. Cristina is going to grow kidney organoids in the lab at the University of Cambridge, to investigate how PKD cysts develop.
Using the organoids, Cristina will learn more about how to limit the growth of the cysts in PKD, and potentially how to prevent their formation. The team will not only learn from their kidney organoids but will also work alongside pharmaceuticals companies to support development of new treatments for PKD.
For PKD patients like me, cysts are that constant, nagging reminder that all is not right with our bodies – the constant discomfort, sometimes pain when they burst, the distended belly. Research into arresting their growth is vital to improving our quality of life, and that of our children who may have inherited this terrible genetic disease.
Wayne Smith (PKD patient)This research is going to be so important for so many kidney patients. If this research could potentially reduce the risk of those complications, I am sure it will be welcomed by many patients to reduce their fears and worries as they face this horrible disease.
Mae Smith (Kidney Research UK public and patient involvement manager)
If you want to get on board at Kidney Research UK but are not sure how, take some inspiration from these volunteers and fundraisers...
The work we do at Kidney Research UK is enabled thanks to a variety of donations, but some of the most crucial contributions are those made by our wonderful volunteers and fundraisers. These incredible individuals are a vital part of what we call Team Kidney. They are pivotal when it comes to driving change, using their time, voice and money to help us fund vital research, spread the word about our work and improve the lives of those affected by kidney disease.
But whilst we’re constantly amazed by the amount of time and energy people are prepared to generously give, Marc Shaw, head of community, events and volunteering at Kidney Research UK, says there’s always room for more people on Team Kidney – anyone can get involved. He said: “If you’re a researcher, you’re part of Team Kidney, if you’re a volunteer, you’re part of Team Kidney, if you’re fundraising, you’re part of Team Kidney, if you’re affected by kidney disease, you’re part of Team Kidney. We’re all in this together. That’s what Team Kidney signifies.”
Talking about the importance of volunteers in particular, Marc said: “Our research network volunteers, our community ambassadors, our lay advisory group members, our peer educators and our events volunteers all form an integral part of Team Kidney, supporting us in our work, often literally cheering us on. The more people who join Team Kidney, the louder our collective voices will be and the bigger the difference we can make together.”
There’s no doubt that the efforts of our volunteers and fundraisers are hugely beneficial to the charity, but one thing we hear time and time again is how fulfilling it is for them to give something back. One person who can vouch for this is Richard Bennett from High Wycombe, who started doing his bit for Kidney Research UK as a teenager. Richard was diagnosed with the rare genetic condition Alport syndrome, which causes kidney failure, when he was just six years old and grew up learning about the importance of research and charity work.
He said, “I first started as an event volunteer when my dad did the London Marathon for Kidney Research UK when he
Richard Bennett and family
was 40. I was 13 at the time and went along to the marathon for a few years after that with a bucket to collect money. Then, when I was 40 I had a midlife crisis and decided to do 12 events in 12 months to raise money.”
But physical challenges aside, Richard, now 47, who has just competed in the World Transplant Games in Australia, tells us that his main contribution to the charity these days is as a member of the Lay Advisory Group (LAG), which drives and strengthens patient and public involvement in Kidney Research UK. “Our objective is to give patient insight and put patient involvement at the forefront of research,” he said. “We’re a diverse group and we’ve all got our own experiences. Some of us are kidney patients, some have family members who are kidney patients, some of us have been on dialysis and some of us have had transplants.”
Richard, who works as a procurement consultant in education, says he thoroughly recommends getting on board with the charity. He told us, “I’d really encourage others to volunteer as it’s so rewarding. You feel like you’re making a difference, and having a bit of influence over how things are done makes you feel useful.”
Another person who’s thrilled to be part of Team Kidney is 72-year-old Maria Buckley from Milton Keynes, who’s been volunteering with us as a community ambassador since her kidney transplant
in 2020. Maria was diagnosed with diabetes in her 30’s and saw her kidneys deteriorate over the years until she was put on dialysis in 2019.
She said: “I organise talks in community groups as I want to help raise awareness of kidney disease. I talk about the risks, the symptoms, and how to keep the kidney fit.” Maria is also on our readers panel, which helps ensure our resources are relevant and accessible, and she tells us that she finds volunteering “very fulfilling”. She explained, “A lot of people say that I’m helping people by doing this, but I also learn so much myself, I think it benefits me more than others. Being a volunteer is all about humanity, empathy and strength.”
Megan Cairns, 26, is also keen to share her experience and knowledge with others, having been diagnosed with kidney failure at the age of five. Megan had a kidney transplant at 12 and has thrived ever since, gaining a degree in pharmaceuticals before starting her PhD at the School of Nursing and Midwifery at Queen’s University in Belfast.
But as well as doing her PhD, which is looking at sexual dysfunction in people with chronic kidney disease, Megan finds the time to be a research network volunteer for Kidney Research UK. This involves having a say in which areas of research will be most beneficial to patients and contributing to decisions around which research projects the charity should fund. She explained: “An email goes out to volunteers to say that grant applications need to be reviewed and we’ll read through the application. There’s a questionnaire at the end which you fill out to say if you think the research will be beneficial and asking if you think there’s enough patient input into how the research project will run.”
But that’s not all Megan does. On World Kidney Day this year she hosted an event in her student union to educate her peers. “I was able to
teach students about kidney disease, raise awareness and bust some myths and talk about organ donation. We had 20 people sign up to become organ donors.”
In a similar vein, John Roberts, a retired clinical supervisor for the NHS Emergency Ambulance Service from Salford, is a peer educator volunteer for the charity and is involved with the Antennae project (which has been taken from Addressing Inequalities in Renal Research). This aims to drive the recruitment of people from ethnic minority groups and those from lower socio-economic groups who are often under-represented in research.
John, 65, visits patients in dialysis units and gives talks in his local area to stress the importance of participating in research. He tells us: “I always start by saying to people, I am appealing for charity but I don’t want your money. All I want is your time to consider and register your interest in taking part in research.”
John, who had a kidney transplant in 2019, continued: “The Antennae project is important because medicine and other treatments should be the great leveller. We should all be treated in the most appropriate and effective way that is right for us. And the only way we’re going to get that is if research focuses on all ethnicities and on anyone else who doesn’t traditionally take part in research.”
These are just some of the ways you can join Team Kidney as a volunteer, but there are also numerous ways you can fundraise. Niall MacCallum from Argyllshire ran the London Marathon for us this year in memory of his dad Eddie, who was diagnosed with kidney disease at 19 and died from complications last year when he was 76. Niall, 43, has raised over £2,500 and says he’s been “blown away” by the support. He says, “I’m grateful for every single penny that people gave to allow me to raise funds for this really important cause.”
Meanwhile, Tim Carr, from Bishops Stortford also did the London Marathon to celebrate the 26th anniversary of his sister in-law’s kidney transplant (her ‘kidneyversary’). We love this take on combining kidneyversary celebrations and fundraising.
Tim, 53, said, “I’ve run quite a few marathons before but the connection between Kerry’s transplant anniversary and the 26 miles in a marathon was just too good an excuse to do another one.”
If running a marathon feels like too daunting a prospect, a fun, gentle alternative would be to sign up to take part in either the London Bridges Walk on Sunday 16 July or the Glasgow Bridges Walk on Sunday 20 August. These fantastically uplifting events cost just £5 to enter. Participants then raise sponsorship from friends and family to spur them on for their seven mile walk (or their one mile alternative accessible route), joining hundreds of other supporters helping raise money and build bridges to transform treatments for people living with kidney disease everywhere.
But fundraising doesn’t have to centre around exercise, as Bhavesh Bavisi, 57, proved earlier this year when he hosted an event to commemorate the 10 year anniversary of the death of his wife, Jesika, and to raise money for Kidney Research UK. Jesika had kidney disease and Bhavesh himself has spent several years on dialysis and undergone two transplants since she died in 2013. He said, “Mentally and physically, I can’t do anything like a marathon or a walk, so I thought, ‘how can I do this?’”. He soon came up with the
lovely idea to organise a concert with live music and prayers in his wife’s memory. The event, which took place in March, was a great success and raised over £400.
Or if you want to push the boat out whilst helping to raise money for Kidney Research UK why not treat yourself to a ticket to our luxurious gala dinner, which is being held at The Underglobe at Shakespeare’s Globe Theatre in London on 11 October. The event has a Midsummer Night’s Dream theme and promises magical entertainment, dancing and live auctions. Tickets are £250 each (or £2,500 for a table for 10) and guests will enjoy a champagne reception and a delicious three-course meal.
WEDNESDAY
We’d love to see you at our events –visit our website for details!
London Bridges Walk
Sun 16 July
North Downs 50 Ultra Challenge
Sun 23 July
British Transplant Games, Coventry
Thu 27 - Sun 30 July
The Big Garden Party
Sat 12 - Sun 13 August
Glasgow Bridges Walk
Sun 20 August
Tour O the Borders
Sun 3 September
Driving Discoveries, Leeds
Wed 6 - Thu 7 September
Thames Path Ultra Challenge
Sat 9 - Sun 10 September
Zipslide the Clyde
Sat 9 September
Great North Run
Sun 10 September
Organ Donation Week
18-24 September
ArcelorMittal Orbit Abseil
Sat 7 October
Gala Dinner
Wed 11 October
