Update Summer 2019

Summer 2019 Issue 19

THE MAGAZINE FROM KIDNEY RESEARCH UK

ANDREW COLE’S TRANSPLANT CHALLENGE STORY PAGE 04

The impact of kidney disease on young lives PAGE 06

Fighting anaemia on dialysis PAGE 08

The legal lowdown on organ donation PAGE 10

Welcome The best way to understand the impact of kidney disease is to listen to the real story as told by people in their own words.

When the ‘storyteller’ is already in the public eye, like professional footballer Andrew Cole, it shows kidney disease can happen to anyone.

So we are enormously grateful to Andrew for sharing his personal story, which places an even brighter spotlight on kidney disease.

In the interview on pages 4 and 5 Andrew speaks of how reassured he was when he heard about the young people involved in a research study investigating the social and economic impact of kidney disease (see pages 6 and 7). The openness of the 625 young people who took part will help to work out how to make improvements in future care. The research is looking at the big picture – how to care for the whole person, body and mind.

On pages 12 and 13 we’re also bringing you a flavour of various other exciting research we are funding – from repairing damaged kidneys using stem cells, to predicting kidney disease in pregnant women.

You can also read about our major study which has established the best way to use iron in the treatment of anaemia during dialysis (pages 8 and 9).

On page 14, read about the risk factors for kidney disease. And on pages 10 and 11 we explore how organ donation laws are changing in England, which could mean more organs become available for transplant.

Report reveals disparities in kidney health across the UK This spring Kidney Research UK published a report into kidney health inequalities in the UK, which shows how particular groups of people are at greater risk of developing kidney disease.

The report explains that these groups face worse outcomes from kidney disease and sets out the research needed to address these challenges. The report was launched with a panel debate in the House of Commons, featuring Professor Stephen Powis, national medical director for NHS England, as well as patients and kidney experts. The report found that social deprivation, ethnicity, gender, age, geography and mental health all have a part to play in kidney health inequalities.

“Sometimes we know why these disparities arise, and if they are driven by biology or by society,” explained Peter Storey, programme lead for health inequalities at Kidney Research UK. “But often the evidence is lacking. We’ve launched this report to highlight these issues and empower the research community to plug these gaps in understanding.”

The report summarises an academic review of evidence led by Dr Fergus Caskey (Population Health Sciences, University of Bristol and North Bristol NHS Trust) and Dr Gavin Dreyer (Barts Health Department of Nephrology and Barts Health Diabetic Kidney Centre). The project involved 60 members of the renal community and recommended ways that research leaders can rise to the challenges that kidney health inequalities present.

To find out more and view the report, search for ‘health inequalities’ on our website: www.kidneyresearchuk.org

Finally, find out how you can spread the word to help us boost the numbers of people joining us at one of our fabulous Bridges Walks in London, Newcastle and Glasgow this summer (page 15). I would love to see you there.

Sandra Currie, Chief Executive

Editor Rosie Loft Contributors Allison Parkinson, Maria Thompson, Daisy Rivetti Designed by www.adeptdesign.co.uk

Contact us Kidney Research UK Nene Hall, Lynch Wood Park Peterborough PE2 6FZ Tel: 0300 303 1100 pressoffice@kidneyresearchuk.org www.kidneyresearchuk.org Charity registration numbers: 252892 (England and Wales) SC 039245 (Scotland)

Find out more: www.kidneyresearchuk.org

From left to right: Kidney Research UK chair Professor Jeremy Hughes; patient volunteer Sabina Saeed; Professor Stephen Powis, national medical director for NHS England

Diary dates 2019 London Bridges Walk

June 30

London

Walk 7 miles

Newcastle Bridges Walk

July 14

Newcastle

Walk 7 miles

Ride London 100

August 4

London

Cycle 100 miles

Glasgow Bridges Walk

September 1

Glasgow

Walk 7 miles

Great North Run

September 8

Newcastle

Run 13.1 miles

Own Bridges Walk

Any time

Any place

You decide

NEWS // P03

What a buzz on World Kidney Day!

smashes it at the London Marathon #TEAMKIDNEY took on the Virgin Money London Marathon in style in April, with 65 runners completing the 26.2 mile course and raising over £135,000 for Kidney Research UK. We couldn’t be more proud of our runners, they go above and beyond for our cause.

Leeds Children’s Hospital Transplant Team

Marc Stowell, Director of Fundraising and Communications for the charity.

“This year we had 65 runners with just 123 working kidneys between them – some living with one kidney after receiving a transplant, three having donated a kidney,” he continued. “Many were running in tribute to loved ones living with kidney disease, whilst some were running in memory of loved ones they have lost.”

Martin Belzunce was our first runner across the finish line in an incredible time – just three hours and 20 seconds. Originally from Argentina but now living in London, imaging engineer Martin had a kidney transplant four years ago.

I wanted to run London to show that the kidney transplant won’t stop me achieving things.

Martin Belzunce

Dr Ian Logan nears the finish

Second past the post for Kidney Research UK was Newcastle kidney consultant Dr Ian Logan.

Remarkably, he headed back to Newcastle the same day to see some of his home dialysis patients in his clinic that evening.

Over 140 groups ran events under the World Kidney Day banner in the UK, sharing positive health messages through display stands, educational events, guess the number of ‘beans’ in a jar and various exercise-based activities.

I’m a keen sportsman and will also be completing the Ride 100 cycle ride in the summer for Kidney Research UK, as well as swimming the Serpentine.

Hospitals were a popular location for awareness stands throughout the country.

At Peterborough Hospital our mascot Beanie greeted members of the public, helping showcase the work of the charity and raising vital funds for research.

Dr Ian Logan Inspired to take on the 2020 Virgin Money London Marathon for Kidney Research UK? Register now for your place: www.kidneyresearchuk.org/getinvolved/events/london-marathon

May the fourth be with postman Darren A postman from Blackpool swapped his familiar Royal Mail uniform for a movie accurate stormtrooper costume to deliver his mail and raise awareness for Kidney Research UK on May 4, Star Wars Day. Darren Sutcliffe is an avid Star Wars fan whose stepfather sadly passed away last year. He took on the gruelling task of walking over eight kilometres around Blackpool south shore, in memory of his stepfather Rod Park and raised over £500 for Kidney Research UK in the process. Darren had been building his costume around the time his stepfather passed away, so felt it was meant to be.

People across the UK stepped up to raise awareness of kidney disease on World Kidney Day in March this year.

“Rod had a kidney transplant 20 years ago, he had polycystic kidney disease and lost his father to the same disease at the age of 46. However, with Rod it was other health issues that took his life. Rod is sadly missed, he was a very funny man with a great sense of humour, who was caring, and loving and best of all, he made my mum happy.”

World Kidney Day also had a strong virtual presence, with support from people across the world helping to ensure #worldkidneyday was trending on Twitter.

“Once again our supporters have done us proud, making a huge noise to draw attention to kidney disease,” said Sally Howard, head of supporter care at Kidney Research UK. “We’d like to thank every single one of you for all your efforts on this and every day you help the kidney cause. And we’re looking forward to all the exciting activities that will happen between now and the next World Kidney Day, on Thursday 12 March 2020.”

Peterborough Hospital

Darren had the backing of his employers, Royal Mail, who have offered to match his final total.

I’ve loved building the costume and I’d like to thank everyone for their support and donations.

To make a gift to Kidney Research UK call: 0300 303 1100

ANDREW COLE’S STORY // P04

Tackling a new game Used to facing challenges on the pitch, Andrew Cole’s shock kidney disease diagnosis was an unwelcome disruption to his retirement from an illustrious footballing career. In this first interview with Andrew as our new ambassador, we find out about these challenges, and how our research is helping him approach them.

F

ormer Manchester United striker Andrew Cole is no stranger to the ups and downs of kidney disease. He vividly recalls feeling tired and bloated, but was convinced it was nothing serious when he reluctantly went to see his GP. On his way to his doctor, he remembers turning back to his son and saying: “I’ll be back in an hour”.

“I had no idea what lay ahead,” he said.

Doctors believe a virus he contracted on a charity trip to Vietnam in 2015 had damaged his kidneys. He was admitted to hospital and diagnosed with focal segmental glomerulosclerosis (FSGS) – a disease where the glomeruli, the tiny filtering units of the kidneys, become ‘scarred’. He had around seven per cent kidney function and spent close to three weeks in hospital having a kidney biopsy and receiving haemodialysis treatment. It was clear early on that he would need a transplant.

“I didn’t know anyone who had been through it and so I didn’t have anyone to turn to for advice,” Andrew said. “Throughout my career and life there’s always been people there to help me, and this was the first time I had experienced anything so life-changing. I had never been in this position before, not knowing what the outcome would be.”

Living as a transplant patient, not knowing what’s around the corner is not easy.

Find out more: www.kidneyresearchuk.org

ANDREW COLE’S STORY // P05

Andrew Cole’s footballing career Andrew Cole’s career lasted from 1988 to 2008. He is most notably remembered for his time playing for Manchester United in the Premier League, where he spent six years, winning numerous trophies in the process.

Andrew Cole at Bristol University with Kidney Research UK chief executive Sandra Currie and some of the charity’s funded researchers

A challenging time As a professional footballer and athlete Andrew was still at the top of his game, which meant his diagnosis was particularly hard to deal with.

High doses of steroids played havoc with his body image and self-esteem, leading to an all-time low he admits was challenging for everyone, particularly his family.

“When you look in the mirror and hate what you see it’s a difficult mindset to escape,” he said.

Yet Andrew’s most challenging struggles were to come post-transplant, at a time when people around him expected him to make a full recovery.

“I hated every minute of it, it has been really difficult to adjust to,” he explained. “Living as a transplant patient, not knowing what’s around the corner is not easy. I remember first getting home after my transplant and looking at all the drugs I had been given and thinking this is what I need to take for the rest of my life to stay alive.”

“It’s a difficult thing to deal with, particularly for my family and close friends who thought a transplant was a cure. Getting used to the medication has been really difficult. There are so many things I want to do but no longer can. When you come from a sporting background it’s hard not being able to do everything at full pelt, but, I accept I can’t do that any more.”

At the beginning of 2019 he became an ambassador for Kidney Research UK. He has spent time at the University of Bristol, home to a number of the charity’s research initiatives, talking to researchers and hearing about the great projects the charity is funding.

He said: “The trip to Bristol was really exciting.

Listening to the researchers explaining the work they do in a simple way was amazing, it has really helped me to come to terms with my condition. When I heard [researcher] Dr Alexander Hamilton talk about the young transplant patients he had interviewed I realised I’m not the only one going through this. Some of the young patients described their symptoms and how they felt and I could completely identify with them. The research made me feel so reassured.”

He also played in the top division of English football for Arsenal, Newcastle United, Blackburn Rovers, Fulham, Manchester City, Portsmouth and Sunderland, as well as in the Football League for Bristol City, Birmingham City, Burnley and Nottingham Forest. He is the thirdhighest goal scorer in Premier League history, netting an incredible 187 goals.

Cole has the distinction of being one of the few players in England to have swept up all possible honours in the English game, including the Professional Football Association Young Player of the Year award, as well as the coveted UEFA Champions League title. Cole was also capped 15 times for the England national team between 1995 and 2001, scoring against Albania in a 2002 FIFA World Cup qualifier.

My self-esteem has taken some knocks recently, but talking to the Kidney Research UK scientists and meeting people who have been through a similar thing to me has put me in a much better place now and I’m looking forward to doing more this year.

Turning a corner Two years on from his transplant, things are looking brighter for Andrew as he adjusts to his new life as a kidney transplant patient.

“I’m starting to come to terms with it all much better now,” he said. “Counselling has played a big part in my recovery – I’d recommend it to anyone going through a similar thing.”

Andrew met with Dr Alexander Hamilton who is leading the SPEAK study. This has mapped the impact of kidney disease on young people’s education, relationships, jobs, home life, independence, psychological health and mental wellbeing. Turn to page 6 to find out more.

To make a gift to Kidney Research UK call: 0300 303 1100

YOUNG ADULT KIDNEY // P06 YOUNG ADULT KIDNEY

Young adults speak out about kidney disease A hard-hitting study has revealed the stark reality of being a young UK adult on renal replacement therapy.

T

he Surveying People Experiencing young Adult Kidney failure (SPEAK) study highlights the many challenges faced by young people on dialysis and with a kidney transplant. The study was led by Dr Alexander Hamilton, a kidney doctor and lecturer at the University of Bristol and Southmead Hospital, Bristol. Its findings have led to further research to find effective ways to improve physical and mental health and overall quality of life for this group.

Through a grant from Kidney Care UK, managed and supported by Kidney Research UK, researchers invited young adults from every renal unit in the UK to take part in an online survey.

The survey looked at many aspects of living with kidney disease including education, relationships, jobs, home life, independence, psychological health and mental wellbeing.

625 people aged between 16 and 30 responded to the survey. Just over two thirds of the people responding (71%) had kidney transplants and just under one third (29%) were on dialysis.

Their information was checked against other young adult kidney patients’ data from the UK Renal Registry (which collects, analyses and reports on data from 71 adult and 13 paediatric renal centres). It was then compared to people of the same age group in the general population, using a range of different sources.

Dr Alexander Hamilton

If we know what is happening now we can start to find ways to make things better.

What did the survey find?

The survey provided insight into the lives of young adults on dialysis and those who had had one or more transplants.

We were less likely to be in a relationship and have children

We were more likely to in live the family home, receive no income and be unable to work due to health, despite gaining the same levels of education as the general population

Find out more: www.kidneyresearchuk.org

We had poorer quality of life than young adults in general – and people on dialysis experienced a lower quality of life than those who had received kidney transplants

YOUNG ADULT KIDNEY // P07

What’s going on?

Dr Hamilton worked with colleague Dr Pippa Bailey to review existing research into the possible reasons why quality of life might be poor in young adults on renal replacement therapy and found three main themes: c Living in limbo – ‘never knowing what’s around the corner in terms of health and how difficult that is to live with’ c Having thwarted or moderated dreams or ambitions – ‘having to completely change your life goals in the face of having a chronic disease’ c Feeling different and desiring normality – ‘being aware that you are different and wanting to not experience that’.

Revealing clues to how to make things better “We wanted to understand exactly how kidney disease is having an impact on the lives of young adults, because if we know what is happening now we can start to find ways to make things better,” says Dr Hamilton.

We had worse wellbeing and were twice as likely to experience mental health problems

“For example, we could ensure we routinely assess a person’s mental health as well as their physical health. We have shown that mental health problems can be linked to poor medical outcomes, such as problems with managing medications and transplant failure. But we know that mental health problems are potentially treatable, so addressing this issue could lead to better outcomes for patients.

“We also saw worse outcomes for young adults on dialysis so we need to find out if improving access to treatments may help – for example, kidney transplants or different types of dialysis.”

A welcome survey among participants The SPEAK study has been welcomed by many people who took part in the survey.

One participant commented: “I’m so pleased you’ve done this survey and that the impact of both dialysis and transplantation in adolescents is going to be taken seriously, and perhaps will lead to a more holistic approach in time.”

We were less likely to smoke, drink alcohol or take drugs, or be involved in gambling or crime than young adults in general.

Although this is a good thing, it suggests we might not be having the same experience on our journey to adulthood as other young people

Sandra Currie, chief executive of Kidney Research UK, said: “The results of this important study paint a stark picture of the life and prospects of young adults living with kidney disease. The aim is to change this.

We’re committed to continuing to power research to test and embed improvements in how young people are treated and supported.”

What’s next?

Dr Hamilton is now researching other treatments and initiatives that have been used to help young adults with other chronic conditions such as Type 1 diabetes and cystic fibrosis, to see if these could potentially help people with kidney disease.

“A lot of work still needs to be done, but ultimately we hope to find practical and acceptable ways to empower young adults to ‘own’ their kidney disease and learn ways to cope and self-manage, rather than the disease owning them,” says Dr Hamilton.

We’re committed to continuing to power research to test and embed improvements in how young people are treated and supported.

Sandra Currie, chief executive of Kidney Research UK

Speak to someone if you need support If you are being treated for kidney disease and are struggling with any mental health issues, don’t wait for your next clinic appointment to speak to somebody about it. Contact your renal unit or make an appointment to see your GP. Peer support is also available through the Young Adult Kidney Group on Twitter (@YAKidneyGroup) and Facebook www.facebook.com/ groups/youngadultkidneygroup More practical support ideas, hints and tips are also available on our website: www.kidneyresearchuk.org/ healthinformation

To make a gift to Kidney Research UK call: 0300 303 1100

RESEARCH ROUND UP // P08

A big step forward in managing anaemia Kidney Research UK has coordinated a £3 million study looking at an important aspect of anaemia treatment during haemodialysis treatment – the use of iron – and the results have now been published.

PIVOTAL shows that patients

treated with higher iron doses (who also received less EPO) experienced fewer cardiovascular problems when compared to those receiving lower doses.

Find out more: www.kidneyresearchuk.org

A

naemia can be wearing at the best of times, causing shortness of breath, fatigue and sometimes palpitations. At its worst, anaemia can be debilitating, as patient Paul Spree, from Canterbury in Kent describes: “Going through end stage kidney failure I was very anaemic, I was cold every day, I couldn’t warm up,” he says. “I was tired, lethargic. I felt nauseous all the time.”

By the time you are on haemodialysis anaemia can become a significant problem.

As one of the serious consequences of kidney disease, doctors want to help patients manage their anaemia, avoiding it as far as possible. And research is essential to find the safest treatment option.

What happens in anaemia?

Haemoglobin is a combination of an iron-containing molecule ‘haem’ and the protein ‘globin’.

It carries oxygen to the organs and muscles. When anaemia strikes, there is not enough haemoglobin in the blood, so not enough oxygen reaches the organs and muscles. In severe kidney disease, the kidneys cannot make enough erythropoietin (EPO), a hormone which controls red blood cell production in the bone marrow. This leads to anaemia.

In the past, blood transfusion was the only really effective treatment for anaemia in people with kidney disease, but it came with a number of risks and problems. Today, giving a combination of additional iron and artificially produced EPO injections is more commonplace.

An important question What doctors across the world have grappled with, however, is what the safest amount of iron to give to people on haemodialysis is. Consultant nephrologist Professor David Wheeler explains: “Intravenous iron is a routine part of anaemia management in haemodialysis patients worldwide. However, there has been little evidence to help doctors know exactly how much iron is safe and effective, and that’s meant big differences in the amounts patients have received across the UK and the world.”

Researchers at King’s College Hospital in conjunction with Glasgow Clinical Trials Unit led on the design of a large-scale trial to address this gap in evidence – this was known as the PIVOTAL trial (the Proactive IV irOn Therapy in haemodiALysis patients trial).

Running across 50 UK hospital renal units, this compared the impact of giving different doses of iron to people on haemodialysis.

Some people were given high doses of iron to increase the iron levels in their body (proactive high-dose), whilst another group received lower doses of iron only when their iron levels got too low (reactive low-dose).

RESEARCH ROUND UP // P09

A positive experience on PIVOTAL Paul Spree was one of the 2,141 people who took part in the trial. He was already on iron infusions which made him feel stronger and healthier. He says he found the trial very straightforward.

“I was initially approached by the nurse involved in the trial,” he said. “She gave me some informative leaflets about it which described any risks, and how the data I produced would be handled. Because the iron was administered through the haemodialysis machine whilst I was receiving treatment there was no need for an extra cannulation, so it was completely painless. There was a mild taste of liquorice in your mouth when the iron was being administered, but that was no hardship.

Running over almost five years, PIVOTAL was one of the largest renal clinical trials ever carried out exclusively in the UK.

Reassurance that more iron was more effective – and safe Professor Wheeler was on the PIVOTAL steering committee. “PIVOTAL shows that patients treated with higher iron doses (who also received less EPO) experienced fewer heart and circulatory problems when compared to those receiving lower doses,” he explained. “This means we saw fewer incidents damaging the heart muscle and circulatory system, such as heart attacks and strokes.”

“The PIVOTAL trial nurse would come around every four to six weeks, check how I was doing, including my blood test results, make sure everything was tickety boo and help with any queries.

“I felt like I was contributing to medical evidence for the future, aimed at trying to help make decisions about what is best for patients going forwards. I was doing my bit really, doing my duty to help other haemodialysis patients.”

Paul was on the higher dose of iron during the trial. “I saw my dose of EPO reduce down to the bare minimum, so there was a clear benefit there which I was really

pleased about. Obviously the results give a clear indication to long-term health benefits. We all know that if you’re on haemodialysis for life then things don’t last forever, the body does become more worn out as the treatment progresses.

It’s something you learn to accept. ”Anything that is going to be safer for the heart and circulatory system can only be a positive thing.”

I felt like I was contributing to medical evidence for the future, aimed at trying to help make decisions about what is best for patients going forwards.

Paul Spree

“Doctors use both EPO and iron to treat anaemia in haemodialysis patients. Giving more iron allows us to use less EPO. High doses of EPO have been associated with an increased risk of heart and circulatory events, such as strokes. This is why clinicians like to minimise the EPO dose by giving more iron. The PIVOTAL trial provides reassurance that this is a good approach.”

Another outcome of the PIVOTAL trial is that those receiving high-dose iron need fewer blood transfusions. This is potentially positive news as blood transfusions can lead to the production of antibodies, which could increase the likelihood of kidney transplant rejection further down the line.

The researchers hope the results of PIVOTAL will have an impact across the world, leading to a review of national and international clinical practice guidelines.

To make a gift to Kidney Research UK call: 0300 303 1100

POLICY MATTERS // P10

New law heralds a new era for

organ donation

A new law, recently passed in England, could significantly increase the number of kidneys available for transplantation.

T

he organ donation bill means that, from next spring, adults in England will be considered as potential organ donors when they die, unless they have said that they don’t want to donate.

However, bereaved families will still have the final say in what happens to their loved one’s organs.

This change will hopefully give people awaiting a life-saving kidney transplant operation a greater chance of receiving a suitable organ.

The new legislation, which is effectively an ‘opt out system’, will be known as Max and Keira’s Law after a boy who received a heart transplant and the girl who donated it.

Championed by patients, charities and NHS Blood and Transplant, it aims to transform public attitudes towards organ donation whilst ensuring that people retain total control over their choices and decisions.

How the law will work Adults in England will be considered as potential organ donors when they die unless they have said that they don’t want to donate. This will replace the current opt-in system where people are only considered as potential donors if they or their families have said they want to donate.

People can choose what they would like to give. This could include organs (such as the heart, kidneys, lungs, liver, pancreas and small bowel) and tissues (such as heart valves, tendons and corneas) and bone.

Whatever choice is made, people are encouraged to record their decision on the NHS Organ Donor Register www.organdonation.nhs.uk/helpingyou-to-decide/about-your-choices or by calling NHS Blood and Transplant on: 0300 123 23 23.

Decisions and preferences can be changed at any time, organs or tissue will be taken only with permission. Family members will always be consulted before any potential donation takes place, so it is vitally important that people share their choices with their families. A person can also choose to nominate two people who they trust, such as a friend or a faith leader, to make a decision on their behalf if the situation ever arose.

Find out more: www.kidneyresearchuk.org

POLICY MATTERS // P11

Organ donation laws across the UK Scotland has a voluntary ‘opt-in’ system, but the Scottish Parliament has now approved the general principles of an opt-out scheme. It is likely to take several years before any new law comes into force.

Northern Ireland has a voluntary ‘opt-in’ system.

In 2016 the Northern Ireland Assembly decided not to make any changes to the current basis of consent for organ donation, but the Department of Health is required to promote organ donation.

United through the gift of life When their eldest daughter was killed in a hit and run car crash at the age of just 27, Kathy and Ken Huggins found comfort in the fact that Lesley Ann’s organs saved the lives of six other people.

Their decision triggered a unique friendship with Desmond Jones and his family which has spanned over 30 years.

“We were so pleased when Desmond, who had received one of Lesley Ann’s kidneys, rang to say he would meet us,” says Kathy.

Lesley Ann Huggins

“The day Ken and I met him was such a wonderful day.

His family made us feel so welcome and sitting next to Desmond, holding his hand and knowing Lesley Ann was still living inside him, made me feel so happy.”

Desmond sadly passed away last year – but had enjoyed 30 extra years of family life and extensive travel, thanks to Lesley Ann’s kidney.

Wales has been operating a similar opt-out system since December 2015 and their organ donation consent rates are now the highest in the UK at 75 per cent.

Under the system people are considered to have no objection to becoming a donor unless they have said that they do not want to donate.

For more information about organ donation in the UK, including advice about religious, faith or belief-based concerns or issues, visit: www.organdonation.nhs.uk

Exclusions Certain groups of people will not be included in the new law in England, including under 18s and people who lack mental capacity to understand the new arrangements. Children can sign up to be a donor. But if someone dies under the age of 18 their parents’ consent for donation would still be needed. If the child had signed up to the NHS Organ Donor Register this information would be shared with the family.

“My dad was the embodiment of what’s possible after a kidney transplant,” say’s Desmond’s youngest daughter Sabrina.

“Due to Kathy and Ken’s forward thinking and kindness we were able to have 30 wonderful years with Dad. They were so brave and we are grateful to them and Lesley Ann every day for that gift.”

Desmond with his wife Lynette and their daughter Sabrina

Stories like Lesley Ann’s and Desmond’s show how transplants can save and transform lives.

With 8 out of 10 people on the waiting list needing a kidney transplant, this new law for England is life-changing news and is very welcome. But this is just the first step.

We need to improve infrastructure and clinical practice to make sure that more donated kidneys can reach the people that urgently need them. And we need to find ways to make these precious kidneys work better and last longer.

Sandra Currie, chief executive of Kidney Research UK

RESEARCH ROUND UP // P12

Spotlight on… our research In the last year, we have funded research around the country to understand kidney disease better, and find new ways to prevent, diagnose or treat it. Here’s a snapshot of some of the research we are funding right now…

Creating mini-kidneys using stem cells

Predicting kidney damage in pregnant women with chronic kidney disease

Medical student Sophie Ashley is working with Professor Adrian Woolf at the University of Manchester to work out if stem cells and other regenerative medicine treatments can be used to understand, repair and replace damaged kidneys.

Around one in three women with severe kidney disease develop permanent damage to their kidneys during or after pregnancy and may need dialysis to survive. Currently women with chronic kidney disease are advised not to become pregnant because of this risk, despite the fact not everyone will develop permanent damage.

They have taken stem cells from a patient’s blood and turned them into ‘mini-kidneys’ that contain tiny blood filters and tubules. Their next step is to create the tube called the ureter, so they become a fully functioning mini-kidney and drain urine – one of the kidney’s most important jobs.

Beyond creating mini-kidneys, stem cell-based therapies could also be a way to repair or regenerate damaged kidney tissue. And if scientists could build a new kidney using a patient’s own stem cells, it could be an alternative to transplants or dialysis treatments.

Sophie has received a Kidney Research UK intercalated degree grant of £5,000 to help her take a year out of her medical degree and concentrate on this research.

Find out more: www.kidneyresearchuk.org

We need to develop ways to predict who is at higher risk so people can make a more informed decision. Using data from around 54,000 women with chronic kidney disease from the UK, Canada and Sweden, Dr Kate Bramham and PhD student Elizabeth Ralston from London’s King’s College Hospital are developing a calculator that estimates the risk of kidney damage developing during pregnancy.

Having a tool like this to hand will empower patients and their partners to make a more informed choice about whether to have a baby.

The tool will also help health care professionals guide women about their pregnancy risk.

This research is funded by an award of £110,557, in partnership with The Stoneygate Trust.

RESEARCH ROUND UP // P13

Understanding the global burden of kidney disease

Empowering patients – developing a hand-held potassium sensor

Chronic kidney disease (CKD) is common in countries where the obesity epidemic has hit. Obesity can cause diabetes, but it may also cause CKD – if this is true controlling obesity could also stop CKD developing.

Very high or very low potassium levels can be life threatening for people with kidney disease. Currently patients have their potassium measured in hospital – which takes longer and is expensive.

Dr Will Herrington from the University of Oxford is working with huge banks of biological samples – or biobanks – that are collecting blood and urine, including genetic information – from over one million people from across the UK, Mexico and China. The Oxford team are now following these people to see if they develop kidney disease. They are visiting more than 100,000 households in Mexico, analysing 500,000 electronic healthcare records in the UK, and sifting through 5,000 sets of hospital records from China.

Because they include genetic information, this exciting project will determine whether, and how, obesity directly causes kidney disease – and may reveal other new risk factors. It could pave the way for a large clinical trial testing whether altering these could stop CKD developing.

This research is funded by a Professor David Kerr Fellowship from Kidney Research UK of £186,001 and co-funded by the Medical Research Council.

Professor Fiona Karet at the University of Cambridge is developing a hand-held device which can simply and quickly measure potassium, similar to the monitors people with diabetes use to measure their blood glucose levels. The kit uses disposable sensors which measure potassium levels from a tiny drop of blood from a finger-prick. Originally an idea from patients in Professor Karet’s clinic, the device will give instant results in the home, clinic or hospital – empowering people with kidney disease to monitor their own potassium.

The team has developed a prototype of the sensor and is now refining the design before running several clinical studies to prove if it is accurate. Once the device receives regulatory approval, the sensor will be available for patients and doctors to use.

This research is funded by a research project grant of £114,631.

To make a gift to Kidney Research UK call: 0300 303 1100

KIDNEY DISEASE // P14

Kidney disease: make sure your loved ones know the risks Kidney disease can affect anyone at any age and often has no symptoms. Spotting it early and treating or avoiding the risk factors that can make us more likely to develop problems can help to protect the kidneys from future damage.

The main risk factors are: Diabetes – now the leading cause of kidney failure in the UK Diabetes causes blood glucose levels to become too high because of problems with the hormone insulin.

This increases the pressure inside the delicate filtering system in the kidney (the glomeruli), and over time, these filters become damaged. This damage can itself cause high blood pressure.

High blood pressure – an important cause and consequence of kidney disease Healthy kidneys help to control blood pressure by controlling the amount of fluid in the circulation and by sending hormones (chemical messengers) that control how blood vessels contract or relax.

But this process can be seriously affected if the kidneys are damaged, and can cause high blood pressure, or hypertension. This can lead to further kidney damage – so creating a ‘vicious cycle’ of high blood pressure and progressive kidney damage.

Heart and circulatory disease In heart failure, where the heart stops pumping efficiently, hormones are sent from the main veins to the kidneys, causing them to retain salt and water. This causes fluid to build-up and pressure rises within the main veins.

Heart failure can also make kidney filtration less efficient, due to lower pressure in the arteries supplying the kidneys and higher pressure in the veins draining the kidneys.

Family history of kidney disease Inherited forms of kidney disease can sometimes run in families or be passed down through one or more generations.

If you are from a black, Asian or minority ethnic background Kidney failure is up to five times more common in people from black, Asian and minority ethnic (BAME) communities.

We don’t fully understand why this happens yet, but it could be partly due to high rates of diabetes and high blood pressure in these communities.

Smoking Smoking can: c increase your risk of developing some kidney cancers c damage your heart and blood vessels, which, in turn, can increase your risk of stroke and heart attack c help to cause diabetic kidney disease or make it get worse c lead to surges in blood pressure.

Obesity Being overweight or obese can increase your chances of developing high blood pressure and Type 2 diabetes.

Obesity can also cause kidney disease, even in people without diabetes.

Take a kidney health check Use our interactive kidney health check at kidneyhealthcheck.org to see if you or your loved ones should have your kidney function checked out by your GP.

Find out more: www.kidneyresearchuk.org

Patricia’s story It took what Patricia Gooden describes as “three years of suffering” before her kidney disease was diagnosed, despite Patricia having Type 2 diabetes (a known risk factor for chronic kidney disease).

“I didn’t know about the link between diabetes and kidney disease at the time,” says Patricia.

Today, Patricia uses her experience of struggling to get a diagnosis, of managing dialysis and looking after her transplanted kidney to inform the voluntary work she carries out to support other kidney patients.

I don’t want anyone to go through the same suffering that I did and I would urge everyone, especially those in at risk groups, to have a kidney health check.

Patricia Gooden

FUNDRAISING // P15

LOUS GOING GREEN ON OUR FABU

BRIDGES WALKS

Find out how we’re putting the environment first and making our walks even better.

N

ot only do we want to make a change to the lives of those with kidney disease, we also want to change the way we deliver our events. Amidst talks of a climate change crisis, we’ve taken a number of steps to make our Bridges Walks as environmentally friendly as possible. c No balloons – our fabulous supporters make a beautiful sight as they are, dressed in a sea of purple c No single-use plastic bottles – we’ll still provide water, just in a different way c No carrier bags for merchandise – no need for unnecessary plastic c All maps and registration materials will be digital, not printed – we all love looking at our phones! c Both our t-shirts and our packaging is 100% recyclable – ditching the bad stuff!

In addition to these changes, our London and Glasgow walks will start and finish in brand-new locations.

And new locations mean new routes.

And in Newcastle we’ve listened to feedback to create a new and improved route, incorporating landmarks and sights to behold.

Save up to 40% With the new team registration facility on our website, it’s now even easier to walk the seven mile route together with loved ones. All you need to do is pick a team name and decide who will be team captain!

if you sign up now*

We’re also bringing incredible research closer to you. Our researchers, Dr Michelle Willicombe, Professor John Sayer and Professor Matt Bailey will be at the new and improved events villages in London, Newcastle and Glasgow, respectively, to chat about their work and what they hope to achieve.

We need you to join #TEAMKIDNEY and help raise more money and awareness than ever before to fight kidney disease. Designed to be a great fun and inclusive experience for all, our Bridges Walks are challenging enough at seven miles to work up a sweat, but also short enough to be accessible for people with all different levels of fitness – including kidney patients.

Help bridge the gap between kidney disease and a cure. Sign up today and save £10*! Help us make this year’s walks bigger and better than ever, fundraising to power our life-saving research!

LOND N BRIDGES WALK

Sunday 30 June, Victoria Embankment Gardens

NEWCAS LE BRIDGES WALK

Sunday 14 July, Baltic Centre

GLASG W BRIDGES WALK

Sunday 1 September, Glasgow Green

I thoroughly enjoy taking part in London Bridges Walk. It’s truly a special event to experience when you see a sea of purple stretching out over the bridges and paths along the river.

Andrew Dorrian, event participant

www.kidneyresearchuk.org/bridgeswalks *Pre-event registration cost for adults is £15pp, registration on the day will be £25pp. Children £5pp.

To make a gift to Kidney Research UK call: 0300 303 1100

A gift in your Will can do something incredible.

It can drive vital research until a cure for kidney disease is found. It can improve the treatments people are given. It can allow people to live happy and fulfilled lives again, without restriction and without fear.

Ben is one of the UK's best kidney research scientists, searching for ways to improve the treatments. Help Ben find that answer faster.

To find out more about leaving a gift in your Will please call: 0300 303 1100 or email: legacies@kidneyresearchuk.org or visit: www.kidneyresearchuk.org/legacy Registered Office: Kidney Research UK, Nene Hall, Lynch Wood, Peterborough PE2 6FZ. Registered charity no. 252892 Scottish charity no. SC039245.