Update Summer 2020

Summer 2020 Issue 22

THE MAGAZINE FROM KIDNEY RESEARCH UK

EXTRAORDINARY EFFORTS IN EXTRAORDINARY TIMES How our medical trustees are helping on the NHS frontline PAGE 06

Coronavirus impact on our research PAGE 04

Patients managing in self isolation PAGE 12

KR12902 - Update magazine Summer 2020 - Issue 22 v4 REPRO.indd 1

28/05/2020 17:12:13

Welcome I hope you have been able to adapt to the new way of life, and that you remain well.

Many kidney patients are facing extraordinarily difficult times. We are thinking of all our supporters at this time, and are heartened by your encouragement. So many of you have sent messages of support, it has been so good to know you are all still behind us.

During this period of significant disruption, I am keen to reassure you that we remain committed to improving the lives of kidney patients through research.

Our ambassador Andy Cole has launched a new research fund (pages 6-7); our new strategy begins (pages 8-9); and our research continues where it can (pages 4-5). The link between mental health and kidney disease is under-recognised, our joint statement of intent with Centre for Mental Health outlines our plans (page 3).

Our charity is facing enormous challenges.

Research that could be making a difference has had to stop or pause, with many researchers urgently redeployed back to the NHS frontline.

We have made some really hard decisions, found savings where we can, cancelled events, furloughed staff and reduced pay. It’s heart wrenching when right now, people need our help more than ever.

Amidst the isolation, it’s even more important to keep in touch. I hope you’ll enjoy reading how patients, researchers, and our trustees are faring, and how so many of our supporters are standing alongside us to keep research going.

Best wishes.

Sandra Currie, Chief Executive Contact the editorial team Kidney Research UK, Nene Hall, Lynch Wood Park, Peterborough PE2 6FZ Tel: 0300 303 1100 pressoffice@kidneyresearchuk.org www.kidneyresearchuk.org Designed by www.adeptdesign.co.uk Cover photo Professor Sunil Bhandari Charity registration numbers: 252892 (England and Wales) SC 039245 (Scotland)

Diary dates

Correct at time of going to print 2020 Prudential RideLondon 100

New Scientist Live – London

D miles ELLE CANC 16 August 2020 – Ride 100

15-18 October – Learn about our research

Tour O’ The Borders – Peebles

6 September 2020 – Ride 56 or 74 miles

2021

Glasgow Bridges Walk

LE D 1 or 7 miles NCEL CA 6 September 2020 – Walk

Edinburgh Marathon Festival 5-6 September 2020 – Run 10K, 13 miles or 26 miles

London Bridges Walk

D 7 miles ELLE CA–NC 13 September Walk 1 or

Enervit Peterborough Marathon

Dinner at Swan, Shakespeare’s Globe – London Date TBC – Wine, dine, enjoy

The Andy Cole Fund Gala Dinner – London

Date TBC – Wine, dine, enjoy

Charity Golf Day

7 June 2021 – Play 18 holes

13 September – Run 26 miles

Simplyhealth Great North Run – Newcastle 13 September 2020 – Run 13 miles

London to Paris

various dates – Cycle 315 miles

NewcastleCA Bridges D NCELLEWalk

Skydiving – various locations

My Bridges Challenge

Bungee jumping – various locations

20 September – Walk 1 or 7 miles 6 September 2020 – Your challenge, your way

Great Bristol Half Marathon 27 September – Run 13 miles

Virgin Money London Marathon 4 October 2020 – Run 26 miles

various dates – Jump from a plane

various dates – Jump from a building

3 Peaks Challenge – various locations

various dates – Climb 10,000 feet

Help us create bridges over troubled waters Every year thousands of people come together to take on our Bridges Walks, walking seven miles in London, Newcastle and Glasgow, raising money to push forward research and make a difference to people living with kidney disease.

This year we were hoping to raise £200,000 but we cannot hold our Bridges Walks in the normal fashion. Even if government guidelines were lifted it wouldn’t be right to ask people to come together at a time of such uncertainty.

Instead we are calling on you to complete ‘My Bridges Challenge’. What will your challenge be? Taking place or finishing on Sunday 6 September you could choose to walk seven miles, run 7k in seven days, cycle 70k or amaze us with your own creative challenge – in your own home, garden or in the great outdoors at a safe distance from others.

“We’re really excited that ‘My Bridges Challenge’ allows everyone to choose their activity, fundraise and unite to help keep research going,” said Marc Shaw, head of community fundraising and events at Kidney Research UK. “It’s all about bridges connecting us – can you ask seven people to sponsor you and raise £70? Can you ask seven friends to take part too? Can you all raise £70? We can’t wait to see #TEAMKIDNEY coming together once again, even while we’re apart.”

To find out more, visit: kidneyresearchuk.org/bridgeswalks

We need your help more than ever. If you can donate, please visit www.kidneyresearchuk.org/donate KR12902 - Update magazine Summer 2020 - Issue 22 v4 REPRO.indd 2

28/05/2020 17:12:13

NEWS // P03

Supporters change tack on fundraising

It has been a difficult time for many supporters whose fundraising activities have been impacted by the pandemic. But we are delighted by the commitment of those who are changing their approach to raising money for us at a time when we need support more than ever.

Creative alternatives began with the charity’s #mugshot appeal. Supporters donated the cost of their morning take-out coffee, and shared their mugshot selfie on social media to encourage their friends to participate.

Many have been inspired by the national 2.6 Challenge campaign. We welcomed old and new fundraisers to the challenge including fundraiser Seamus Kelleher, who in 2018-19 completed 24 challenges in 24 months for Kidney Research UK. He joined in, raising over £3,800 cycling for 26 solid hours on his peloton bike. Meanwhile fiveyear-old Isla Wickham walked 2.6 miles and raised nearly £400, inspired by her grandmother who had donated a kidney to Isla’s uncle.

Seamus Kelleher

We’re taking action to improve mental health support We are pleased to announce we will be working closely with the charity Centre for Mental Health. It is our intention to seek a better understanding of the links between mental health and physical wellbeing for kidney patients.

Our joint statement ‘Kidney disease and mental health’ highlights how vulnerable some kidney patients were before the coronavirus pandemic and explains this is an even more urgent issue now.

Mental health problems are all too familiar for Sarah Green, a kidney patient and advisor who has helped to develop the way forward with the charities.

Sarah said: “So many chronically ill patients tell us poor mental health massively impacts their quality of life and

their ability to cope with often traumatic and difficult treatments and health issues.

“Many were already struggling before lockdown and didn’t have the capacity to cope with further stress. But now, people are worried about finances, food and their health. We urgently need to address mental health in kidney disease now more than ever.”

Sandra Currie, chief executive of Kidney Research UK explains: “People can live well with kidney disease if there is a combined focus on their physical and mental health needs. We urgently need to see research that validates which approaches and treatments work to improve prospects for patients at every stage of their illness.”

Kidney patients, their family members and partners are invited to take part in a survey into people’s emotional support needs. To find out more, visit www.kidneyresearchuk.org

To make a gift to Kidney Research UK call: 0300 303 1100 KR12902 - Update magazine Summer 2020 - Issue 22 v4 REPRO.indd 3

28/05/2020 17:12:13

RESEARCH // P04

Keeping research going The world is a very different place than it was a few months ago. Our lives are constantly changing, and this has naturally impacted those working in kidney research.

We need your help more than ever. If you can donate, please visit www.kidneyresearchuk.org/donate KR12902 - Update magazine Summer 2020 - Issue 22 v4 REPRO.indd 4

28/05/2020 17:12:14

RESEARCH // P05

M

ost labs in the UK are temporarily closed and many of our patient-led studies have paused in line with government guidance. Many kidney researchers have downed tools to support the frontline health workers, either by returning to full-time clinical duties or taking on essential support roles, such as helping with the urgent COVID-19 testing in the lab .

We are proud of our researchers and the contributions they are making.

But we are also aware of the huge challenges they face and the impact that coronavirus is having on them and their research. We are doing everything possible to ensure our funded scientists can continue with the fight against kidney disease once research restarts with full force. We need our research to continue now more than ever – and to offer hope to people affected by kidney disease who are now so vulnerable.

The virtual world of science Our breakthroughs don’t only happen in the lab.

Research projects must be meticulously planned, data analysed and results written up. Thankfully, some of these critical elements can be done remotely to keep research going.

Those projects just starting may be subject to delays, some of those in full swing may still be able to analyse data remotely and some of those coming to the end can be written up from home.

Our scientists are committed, and research will continue however it can throughout this challenging time.

Our funded scientists, where possible, are taking their work into the virtual world, creating new resources online, analysing data and planning new collaborations and publications.

The times we are living in are difficult for everyone. But we can get through them. It means we have to change and adapt. We have to help each other, support what we can and prioritise health. In the words of one of our researchers, Dr Stephen Marks, “Stay calm, stay kind, stay safe and stay healthy.”

How are kidney researchers getting on?

Dr Jane Carre from the University of Plymouth is finding out whether mitochondria (the ‘power stations’ producing energy in our bodies’ cells) could explain why people with chronic kidney disease experience muscle weakness.

Lab work at Plymouth has come to a halt as everyone is working from home until further notice.

My research activities are therefore limited to data analysis, reading, planning and writing – but there is always plenty of that to do.

Obviously, like others with young family now at home, there will be an impact on efficiency and working pattern, but my fellowship has already helped me develop skills to deal with this!

Will Mason is a researcher at the Institute of Child Health in London, and is exploring a therapy that helps patients whose kidneys can’t filter blood anymore. By understanding the molecular structure of parts of the kidney, Will’s work could help to keep kidneys functioning as they should.

The lab might be closed but that doesn’t mean Will is stopping this work entirely.

Thankfully, there are results to written up and papers to be published, so Will can work remotely during this time.

Cardiff University has closed its research buildings, but luckily Dr AnneCatherine Raby was granted “essential worker” status to finish experiments with mice that were already ongoing. These experiments were helping her understand how to avoid damage to the peritoneal membrane during peritoneal dialysis.

Not completing this work would have resulted in a waste of animal lives and was considered unethical.

Dr Carlo Alberto Ricciardi is a researcher working at Kings College London. He is hoping to develop new treatments for kidney disease in patients with diabetes by studying how a protein called Nogo-B protects the kidney’s blood vessels from the damage caused by diabetes. As COVID-19 shut down his place of work Dr Ricciardi started to work from home.

Although his experiments are on hold, his usual lab work has been replaced by writing up his PhD thesis and reviewing scientific papers linked to his work.

I truly believe that problems can be turned into opportunities, to a certain extent, and we can certainly learn and improve ourselves from this unprecedented situation. Focusing on my writing skills is going to help me for my future growth as a clinical academic.

To make a gift to Kidney Research UK call: 0300 303 1100 KR12902 - Update magazine Summer 2020 - Issue 22 v4 REPRO.indd 5

28/05/2020 17:12:15

INTERVIEW // P06

ON THE FRONTLINE AGAINST THE CORONAVIRUS Two of our trustees who are frontline doctors have spoken of the importance of people’s wellbeing during the coronavirus outbreak as NHS staff face the toughest time in their careers. Like many of our researchers being redeployed to frontline clinical duties to treat people with coronavirus, they are facing an unprecedented challenge.

B

irmingham-based nephrologist Dr Adnan Sharif and Hull-based Professor Sunil Bhandari, say the camaraderie of colleagues and local communities is getting everyone through. But at the same time, both are concerned for the long-term psychological effects on staff, as well as patients.

Amid the weight of daily pressure, both say teamwork is making an enormous difference.

“Nobody can face this much daily pressure and bear it alone,” said Adnan. “It’s a tough time for everyone. More than ever, staff are supporting each other with buddy systems, extra care and compassion to boost morale.

“Coffee and cake in the staff room has never felt more important. Seniors ensure junior doctors, nurses and auxiliaries are OK and vice versa. It is important we take care of each other.”

Dr Adnan Sharif

We need your help more than ever. If you can donate, please visit www.kidneyresearchuk.org/donate KR12902 - Update magazine Summer 2020 - Issue 22 v4 REPRO.indd 6

28/05/2020 17:12:16

INTERVIEW // P07

No let up “It is a huge administrative task to make sure consultants keep in touch with kidney patients,” added Sunil.

“I’m sure I speak for all hospitals when I say renal nursing teams are amazing. they’ve undertaken a huge job and are working extremely hard.

I don’t think we’ll realise the psychological consequences until many months down the line.

In one day, for example, I took 93 calls (from colleagues throughout our regional hospitals we service, dialysis units and patients), and am mentally drained, but there is no let up and we cannot just stop.

Adnan’s experience is very similar. “In days off I should be resting, but that is not easy as there are emails and queries to pick up at this time of great unknowns,” he explains. “There is a lot of work behind the scenes to make sure we follow the best guidance for patient treatment.”

Sharing findings globally The one good thing emerging is that medics around the world are freely sharing their findings.

“Historically, medics don’t tend to share data because it is better to be peer reviewed by colleagues and written about in medical journals,” explains Sunil. “However, that’s the last of people’s worries now.

“The key concern is doing the right thing for patients to make sure people get the most up to date care.”

Sunil has been in regular contact with renal and medical colleagues from London and countries around the world. “Doctors have become highly skilled in a very short space of time, through necessity. We are sharing our work, research and findings in a way not seen before. There’s so much data that’s available pre-publication; it’s unheard of.

Professor Sunil Bhandari

“I hope it’s reassuring for patients knowing we are using the best knowledge out there.

Practice is changing all the time, thanks to this wealth of lived experience.”

Meanwhile, Adnan recognises that one of the most difficult things for consultants is they can no longer send patients for additional tests or scans if they present with other conditions. “We understand how frustrating this is for patients,” he said.

It is our job to care So, while the nation claps for NHS workers, do Adnan and Sunil and their colleagues see themselves as unsung heroes?

Not at all.

“This is our job - to care,” said Adnan. “We chose this profession and we are doing what we know best. It is no different to firefighters or police entering dangerous situations. It is probably more worrying for family and friends as they watch us leave for work.”

Sunil agrees and added they are all grateful for the morale-boosting rallying of local communities.

“Our local businesses have been fantastic,” he said. “We’ve had fresh bread and fruit delivered daily. Also, my daughters’ old

school, Hymers College in Hull, have made visors for NHS staff. I’ve got a lovely pair of glasses from, I think, their chemistry lab!

“People have been fantastic. It has made a huge difference. Our communities need clapping for supporting us like this.

This is a bizarre time for everyone.

That goes for NHS staff and the general public. It will impact in different ways. It is important we all look after ourselves and keep our mental strength during this difficult time.

Adnan added: “There’s uncertainty in a rapidly changing field, but all things must come to an end. We must and we will, pick up the pieces and carry on.”

To make a gift to Kidney Research UK call: 0300 303 1100 KR12902 - Update magazine Summer 2020 - Issue 22 v4 REPRO.indd 7

28/05/2020 17:12:16

OUR STRATEGY // P08

Freeing lives from k We will no longer tolerate the inevitability of end stage kidney failure, and patients living in fear. It’s up to us to challenge the status quo and lead rapid change, towards a world where lives aren’t limited by kidney disease. Where kidney patients are no longer classified ‘high risk’. Our bold updated strategy shows we’re taking it on and we’re starting now.

It’s unacceptable for people to have to endure the stark realities of living with kidney disease. Dialysis is harsh and has hardly changed in 60 years, transplants have a limited lifespan and kidney disease is increasing globally at an alarming rate. The current pandemic has made kidney patients’ vulnerability even more acute.

Things must change – and we are determined to speed up progress in research, treatments and disease prevention through our new 10-year strategy.

Developed in collaboration with kidney patients and their families, our new strategy is a bold, targeted and urgent promise to deliver change.

Our values: Ambition

Bravery

Passion

Urgency

Our purpose: Prevent kidney disease by finding ways to see it coming, and developing interventions to stop it happening.

End kidney failure by learning how to spot disease early, how to identify and slow down or stop progression, and how to reverse or repair kidney damage.

Transform treatments by making dialysis and transplantation more tolerable and effective, until better alternatives are available.

We need your help more than ever. If you can donate, please visit www.kidneyresearchuk.org/donate KR12902 - Update magazine Summer 2020 - Issue 22 v4 REPRO.indd 8

28/05/2020 17:12:16

OUR STRATEGY // P09

kidney disease Thank you

to everyone who has helped us develop this strategy. So many have helped us to shape it – our trustees, our research strategy committee, our lay advisory committee, our Kidney Voices community, our supporters, those who responded to our patient survey. Our strategy is much stronger because of your input.

In the next decade we will: Accelerate discoveries. We’ll fund, prompt and pave the way for a stepchange in the research effort, to deliver major advances in our fundamental understanding of kidney health and disease.

Make it count. We’ll make sure discoveries are put into practice, so that advances in research rapidly make a difference to people with or at risk of kidney disease.

Rally the nation. We will put kidney disease on the UK’s agenda and build a movement to raise awareness and improve kidney health.

To deliver these actions, we need to be at the top of our game. We have a strategic programme to transform the organisation and strive for excellence in everything we do.

We can’t do it without you.

Our supporters have a vital role to play. By sharing your time, your money and your voice, you can help us drive forward. c c c c

If you feel able to make a gift, please do Follow us on social media Share our messages to help us reach more people If you are affected by kidney disease, get in touch with us to share your story and join our Kidney Voices for Research group

You can read our strategy in full at www.kidneyresearchuk.org

Our impact: Our actions will help to change the future for people living with and at risk of kidney disease, so that by 2030 there will be: Better awareness. More people, particularly those in at risk groups, know how to look after their kidney health.

Earlier diagnosis. New ways to detect kidney disease earlier so that people get treatment before irreversible damage is done.

N ew treatments. New ways to slow disease progress so that kidney patients avoid dialysis or a transplant for longer.

Better treatments. Technological advances in dialysis, to make it more tolerable and effective.

Better kidney transplants. Advances that make transplants last longer, reduce the burden of treatment and monitoring, and improve quality of life.

Kinder monitoring. A new and less invasive alternative to having multiple biopsies to monitor kidney disease.

Encourage new models of healthcare delivery that improve efficiency and equity of kidney care so everyone in the UK gets the best quality treatment and support they need.

To make a gift to Kidney Research UK call: 0300 303 1100 KR12902 - Update magazine Summer 2020 - Issue 22 v4 REPRO.indd 9

28/05/2020 17:12:16

ANDY COLE FUND // P10

Legendary footballer Andy Cole unites with Kidney Research UK to launch new research fund

Will you step up and join Andy’s team? Visit www.andycolefund.org KR12902 - Update magazine Summer 2020 - Issue 22 v4 REPRO.indd 10

28/05/2020 17:12:17

ANDY COLE FUND // P11

W

e last featured Andy Cole in Update magazine a year ago, when he spoke openly about his struggle to come to terms with his kidney disease. In the three years since his kidney transplant, the legendary footballer has welcomed Kidney Research UK’s involvement in his journey, which has helped him understand more about the disease and its impact.

Compelled by his desire to make a difference, Andy has now taken the huge step of launching a new research fund with Kidney Research UK. The Andy Cole Fund will raise funds for research that focuses on improving transplantation and research that will improve the health and wellbeing of people living with kidney disease.

I don’t want anyone to end up struggling like I did.

The mental battle is bigger than the physical problem.

Your mind is the most powerful thing in the world.

A mental battle Since suffering kidney failure in 2015, 48-year-old Andy has spent the last five years coming to terms with a ‘new normal’.

He is now passionate about helping others cope with kidney disease.

“I’ve been mentally strong enough to play football, but this is the toughest battle I’ve ever had to deal with,” said Andy, who is currently in self-isolation during the coronavirus pandemic. He admits that at times his journey as a patient has been very dark. “I used to visit the doctor and make out I was fit and strong because I didn’t want to admit how hard it was, yet mentally, I was dying inside,” he said.

“I don’t want anyone to end up struggling like I did. The mental battle is bigger than the physical problem. Your mind is the most powerful thing in the world.”

Post-transplant shock Andy had thought his 20-year football career would stand him in good stead for a quick recovery after his transplant. He was floored by how different the reality was.

“I 100 per cent thought I would have the transplant and feel like the old me again.

Give me a couple of months, I’ll be up and doing my thing. I’ll be running around again like a young man. Then I got the harsh reality check. It doesn’t happen. It hits you hard. That’s why research into making things better for kidney patients is so important.”

Andy received a kidney from his nephew in 2017. But although his health is vastly improved, he says the transplant operation is not the end of the story for most people.

Photo: Christopher Thomond, The Guardian

“Transplant is not a cure,” he said. “If it works, it gives you a part of your life back and keeps you ticking over. But it’s a lot tougher than everyone makes out. We don’t really talk about kidneys because nobody understands them. When they go wrong it can be fatal.”

Research gives hope Transplanted kidneys only last, on average, 10 to 15 years. Kidney Research UK wants to transform treatments so a kidney transplant doesn’t have a time limit, but can last for life.

The Andy Cole Fund will support this ambition. It will also fund research to improve kidney patients’ mental health and wellbeing, by understanding what support has the greatest impact.

Having visited a lab where he saw first-hand the difference the research we fund is making, Andy is fired up about the fund’s potential.

“The work they are doing is phenomenal, it was a mind-blowing experience. I want to help push that work forward.”

With 15 England caps under his belt, and as the third-highest goal scorer in Premier League history, Andy is used to aiming high.

He’s looking to raise at least £500,000 over the next three years.

We know that kidney failure can turn people’s lives upside down, and Andy’s passion and commitment is inspiring.

Sandra Currie, Chief Executive of Kidney Research UK. “We are really grateful to Andy for choosing to work with us to drive forward research that will make a massive difference to so many other people. We are honoured to have the responsibility of looking after the fund and the research projects that it will be investing in.

Andy’s passion and commitment is inspiring.”

All the money raised through the Andy Cole Fund will go towards specific projects in the areas of transplantation and wellbeing.

HOW YOU CAN HELP Everyone’s welcome on Andy’s team! Visit www.andycolefund.org to find out how you can become season ticket holders to Andy’s team with a regular donation and support our brilliant teams of doctors, researchers and nurses in carrying out life-saving research.

To make a gift to Kidney Research UK call: 0300 303 1100 KR12902 - Update magazine Summer 2020 - Issue 22 v4 REPRO.indd 11

28/05/2020 17:12:17

SELF-ISOLATION // P12

Insights in isolation With the current pandemic forcing kidney patients to shield, unable to leave their homes at all, we wanted to share some kidney patients’ reflections at this time.

David Prosser

Signneed We up for your a Bridges help more Walkthan in 2020 ever.for If you just can ÂŁ5! www.kidneyresearchuk.org/bridgeswalks donate, please visit www.kidneyresearchuk.org/donate KR12902 - Update magazine Summer 2020 - Issue 22 v4 REPRO.indd 12

28/05/2020 17:12:18

SELF-ISOLATION // P13

D

avid Prosser, 60, vice chair of our trustee board, is quietly conscious of his declining kidney function and his need for a second transplant (it is now 33 years since his first). He is passionate about the need for research to improve the lives of people affected by kidney disease.

“Ironically, my children and wife are engaged in a slightly comical battle over who should donate a kidney to me. One daughter claims it’s her right as her nose is the same shape as mine. Another thinks it’s hers because she’s physically the fittest.

And my dear spouse of nearly 38 years thinks she should top the batting line up as it’d be less of a tragedy if anything happened to her, because she’s older (sic)!”, he laughs, “But as with all humour, it’s only funny if there’s a grain of truth in it. Our dark humour masks an underlying psychological minefield.

“I listen and wonder how I would feel in their shoes. I feel a sense of guilt, of shame even. I don’t want to put my fam through the wringer. I’m told it’s perfectly do-able and safe, but for my daughters, I’m dogged by the nagging conviction that a parent should make sacrifices for a child and not the other way around.

“Logically sound and simultaneously, emotionally topsy-turvy; it’s like much of living with kidney disease. The counter thought is that my family want me around a while longer and are showing a huge deal of love and affection by offering to donate.

No, vying to donate! Transplant is a means to an end. It is a strange emotional battle to get to grips with and I suspect one which only a kidney patient would ever truly understand.”

So, with this turmoil rattling around in the background, and labelled ‘extremely vulnerable’ by the Government, how is he coping with self-isolation?

“Research is the only game in town for current and future generations of renal patients”, says David, who is working from home with a business as usual approach during the coronavirus lockdown.

“It is important to keep our message alive, loud and strong. As a kidney patient, keeping busy with a structured day is an important part of my dealing with this strange situation of self-isolation.

“Some physical exercise, charity-related work and a bit of academic study is my daily personal cocktail. Thank heavens for the internet.

“People have no control over their kidney disease. This invisible, silent, invidious thing is happening to you. You didn’t ask for it. It’s life threatening. However, if you can be a part of the movement to facilitate research, that’s a game changer, if not to help you now, to help others in the future. It’s empowering. There‘s no sincerer form of care for kidney patients than participating in research. I get enormous satisfaction from being involved in that in my role as a trustee.”

Transplant is a means to an end. It is a strange emotional battle to get to grips with and I suspect one which only a kidney patient would ever truly understand.

Chris Cook of Harrogate, whose dad donated a kidney to him seven years ago, says: “I’m used to work video calls, so using it to chat to family is brilliant. Seeing people feels more personal than the phone.

Baking together using Face Time is a favourite way for transplant recipient Dina and her daughter Clara MorettiGreene to stay in touch.

The pair miss popping to see each other but say bake-offs are a lovely way to connect. North London-based Clara says: “I miss mum so much but while we cook it feels like we’re together.

Technology makes it easier to keep in touch. I’ve even set up my Nan with an old iPhone to FaceTime!

“We’ve done a family quiz and slide show.

I’m doing indoor cycling and trying yoga.

“Now over the initial panic, I’m settling into isolation. I’m not leaving the house or garden so take comfort knowing I’m safe.

Once this is over, I can’t wait to walk the Three Peaks in Upper Wharfdale with my partner Lucy and our dog Melvin.

Don’t lose your humour, says Fez Awan, from Blackburn, who is on the waiting list for his third kidney transplant. “I’m sure I speak for many when I say I feel like I’m going a bit stir-crazy with cabin fever of staying indoors. My mantra is ‘this too shall pass’.”

Sports fan Fez will miss Wimbledon and European Championship football this summer. A regular movie-goer, he streams films on platforms like Amazon Prime to replace cinema trips.

I’m enjoying Man Like Mobeen, probably the first Asian comedy since Goodness Gracious Me in the 1990s.

Humour is a great coping strategy!

To make a gift to Kidney Research UK call: 0300 303 1100 KR12902 - Update magazine Summer 2020 - Issue 22 v4 REPRO.indd 13

28/05/2020 17:12:19

RESEARCH ROUND UP // P14

Spotlight on… our science Before the coronavirus pandemic hit we had just invested almost £0.8m in partnership with The Stoneygate Trust into a new round of research that will shape the future of kidney disease and bring hope to patients now and for years to come.

The projects below are a selection which were part of the 2020 Stoneygate and Kidney Research UK award.

Using sound as an alternative to biopsy

Can a drug help to prevent kidney damage?

As chronic kidney disease (CKD) progresses, kidney tissue becomes harder through a process called fibrosis, or scarring. We can. We can see how severe CKD is by measuring this hardening effect. Usually, this means taking a tissue biopsy.

Glomeruli are the kidney’s filters. They are microscopic balls of tiny blood vessels, known as capillaries, whose walls have special adaptations to enable them to act as biological sieves. The sieves are designed to allow water and small waste products through into the urine but retain blood cells and large molecules such as proteins in the blood stream. A gel-like layer known as the glycocalyx forms the first component of these sieves. Diseases that affect the glomeruli can cause that sieve to leak, eventually leading to kidney failure.

But a biopsy is invasive, can be painful and carries risks, meaning it can’t be done very often in the same person. Also, kidney biopsies only take a small section – less than one per cent of the kidney – meaning they could miss the most diseased part of the organ.

Magnetic resonance elastography (MRE) is a relatively new technology that uses magnetic resonance imaging (MRI) to measure tissue elasticity. It’s like a more advanced ultrasound.

MRE works by sending sound waves into the body to build up a picture of what’s inside with the help of a computer.

Professor Simon Satchell at the University of Bristol and his team have found that in diabetes and other conditions, the glycocalyx becomes damaged by particular enzymes called matrix metalloproteinases or MMPs. These enzymes act as chemical scissors that remove the glycocalyx. If we can stop these enzymes working then the glycocalyx is protected and the leakage is reduced.

Scientists at the University of Nottingham, led by Professor Susan Francis, will optimise MRE to better estimate kidney hardness caused by fibrosis. This technique will allow doctors to monitor CKD progression in people with a kidney transplant without the need for a biopsy.

Simon will determine whether an existing antibiotic can prevent glycocalyx damage. This antibiotic is already known to be safe in humans, so if they can show that it works, it could potentially be used to treat kidney disease much sooner than any newer treatment.

This research is funded by a research project grant of £49,075

This research is funded by a research project grant of £91,307

We need your help more than ever. If you can donate, please visit www.kidneyresearchuk.org/donate KR12902 - Update magazine Summer 2020 - Issue 22 v4 REPRO.indd 14

28/05/2020 17:12:20

RESEARCH ROUND UP // P15

Monitoring kidneys before and after a transplant

Understanding depression in people with chronic kidney disease

When you remove a kidney ready for transplantation, it can become damaged, to the point where it is not healthy enough to be given to someone else.

Mental health problems are more common in people with chronic kidney disease (CKD) compared to the general population. People with CKD who experience depression frequently have poorer physical health, a lower quality of life and can even die younger, compared to people with CKD who do not have depression.

This damage occurs from both the lack of oxygen and changes that happen when the supply of blood is reconnected. The kidney goes into a state of stress because it doesn’t have enough oxygen and the kidney starts to make cells called chemokines, which can damage the kidney further.

We need new ways to check how much damage is being caused to the kidney through lack of oxygen. Professor Simi Ali and the team at Newcastle University will look at urine and blood to detect the level of chemokines released by the kidney and compare this to the level of damage.

Once their methods have been established, they will test it in a much larger selection of patient samples so that patients who are at higher risk of early transplant problems can be picked up earlier and interventions can be put in place.

This research is funded by a research project grant of £49,965

Sadly, right now, we don’t know how best to treat depression in CKD patients. There are general guidelines for people with long term conditions with depression, but we don’t know if these guidelines are used, or if they’re helpful in people with CKD. Dr Joseph Chilcot at King’s College London wants to change that. Joe and the team will start by looking at existing ways that people with long term conditions and depression are treated. Then they’ll create a questionnaire (with help from experts, carers, kidney patients and health care professionals) to send to all of the UK renal services, to understand how they treat adults with CKD and depression.

Their findings will be discussed with an expert panel so that they can develop the best practices and make recommendations for a new pathway of care for people with CKD and depression.

This research is funded by a research project grant of £223,262

To make a gift to Kidney Research UK call: 0300 303 1100 KR12902 - Update magazine Summer 2020 - Issue 22 v4 REPRO.indd 15

28/05/2020 17:12:20

Keep research going for future generations by leaving a gift in your Will A gift in your Will can help keep vital research going until a cure for kidney disease is found. It can improve the treatments available, and reduce the restrictions and fear faced by many.

To request a brochure with information on leaving a gift in your Will

0300 303 1100 legacies@kidneyresearchuk.org A GIFT IN YOUR WILL

TO HELP PREVENT, TREAT AND CURE KIDNEY DISEASE FOR FUTURE GENERATIONS

www.kidneyresearchuk.org/legacy

Registered Office: Kidney Research UK, Nene Hall, Lynch Wood, Peterborough PE2 6FZ. Registered charity no. 252892 Scottish charity no. SC039245.

KR12902 - Update magazine Summer 2020 - Issue 22 v4 REPRO.indd 16

28/05/2020 17:12:21