Update Magazine November 2018

Autumn 2018 Issue 17

THE MAGAZINE FROM KIDNEY RESEARCH UK

SEVEN THINGS I WISH I’D KNOWN BEFORE MY TRANSPLANT PAGE 08

The story of a caring and brave young man

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Kidney research specialists answer your questions

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Salt control and why you should reduce your intake

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Welcome Welcome to the autumn issue of Update magazine, I hope you enjoy reading it. In this issue you will read about just a few of the projects we are currently funding which we hope will make a difference to patients and their families soon. We also hear from people living with kidney conditions who are sharing their personal experience.

Some of this is hard to read.

Kidney disease can be devastating and unfair. We are striving to change this.

Our new partnership with Diabetes UK is one example of us working with the best people to make a bigger difference sooner. We’ve recognised there is an opportunity for closer working to speed up progress in preventing people with diabetes developing kidney disease. We are making this happen.

As a charity we include patients, carers and their families in our work because they are in the best position to offer unique, invaluable insights. With a strong patient focus and active inclusion, research is improved, which in turn leads to better prospects for care and treatment for more kidney patients. This year patients continue to play an integral role with us by raising awareness and encouraging involvement in volunteering in a variety of settings. By helping to recruit patients to clinical trials, we continue to put patients at the heart of everything we do.

Without the contribution of time, energy, funds and knowledge the patients, supporters and researchers all give us, the work of the charity would not have flourished in the past year.

Thank you all for making it happen.

Stay in touch We’re always keen to hear from our supporters and it’s never been easier to get in touch. You can follow us on Twitter, where we’re @Kidney_Research, and we’re also on Facebook, Instagram and LinkedIn. If you’d like to send us a letter, the address is: Update Magazine, Kidney Research UK, Nene Hall, Lynch Wood Park, Peterborough PE2 6FZ or email: pressoffice@kidneyresearchuk.org.

Coming home to a card with this message! Can’t thank you enough @Kidney_Research shall do my best on the day for sure Elaine McGill @EmcG1

Ian Old

Kidney Research Supporter

Great North Run 2018. Complete This event started my love of running 5 years ago and I owe so very much to it I ran for Kidney Research that day in 2013 in memory of my Grandad...and today I did just the same. It was tough and the conditions were warmer than expected.

(Not quite London Marathon heat, but hot enough). It was also hillier than I remembered. The time wasn’t important to me today, and with limited training, I decided to turn my watch over and just run to feel and not worry about the pace. That regardless, I came in with a time of 1:25.54 and 263rd place out of 50,000 odd people. I want to say a massive congratulations to my cousin James Horne who powered his way to the finish despite being diagnosed with shin splints a few weeks back. You are a hero mate I have had fantastic support from Kidney Research UK for both the London Marathon and GNR, particularly from Louise Morris @morrisdidthemarathon2018 who I got to meet today, and I can’t thank you enough for all that support. James’ Mum & Dad Neil and Marie also supported both James and myself fantastically from start to finish, it so great to have you guys there. And last but not least, my wonderful girls. Not only did they stand waiting for me and cheering me on, but Kirsty then made us all a celebratory roast dinner back at our caravan I am very thankful for their wonderful support and so proud of Elodie for being such a good girl for Mummy.

Apologies for the long post, but this event always does this to me #blessed #thankyou #greatnorthrun #halfmarathon #teamkidney #ipswichjaffa #oggyoggyoggy #loverunning @kidney_research_uk @great_run

Sandra Currie, Chief Executive

Diary dates 2019 Race For Research

Editor Maria Thompson Contributor Allison Parkinson 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

Find out more: www.kidneyresearchuk.org

January 26.2 mile run 50 mile walk or 100 mile cycle

The Big Half (London) 10 March 13.1 mile run

London Marathon

28 April 26.2 mile run

Run For Research

May 26.2 mile run over one month

Bridges Walks

Summer 2019 7 mile walk

NEWSROUND // P03

Partnering to tackle diabetes and kidney disease head on Kidney Research UK and Diabetes UK have pledged their commitment to tackling kidney disease and diabetes together.

By bringing together leading scientists and funding vital research, both charities hope their joint efforts can lead to a better understanding of why kidney disease develops in people with diabetes, and how to stop it.

Diabetes is the single most common cause of kidney failure in the UK. Right now, there are 22,600 people in the UK who have diabetes and need dialysis or a kidney transplant.

Kidney Research UK and Diabetes UK have established Clinical Studies Groups: groups of scientists, healthcare professionals and people living with either diabetes or kidney disease, who work together to identify the most important areas of future research. To support this new partnership, these expert groups are now collaborating, to ensure that expertise across diabetes and kidney disease is put to the best use, in order to tackle research priorities and improve the lives of people with these conditions.

The charities are also open to co-funding research projects, enabling supporters’ donations to go even further, and are encouraging researchers to notify both charities in advance of applying for funding.

Elaine Davies, director of research at Kidney Research UK, said: “By working together, our

By working together, our two charities want to protect people with diabetes from developing kidney disease and slow the progression of this devastating condition.

two charities want to protect people with diabetes from developing kidney disease and slow the progression of this devastating condition, helping people live longer. Kidney disease spotted later in people with diabetes can result in poorer health outcomes.”

Dr Elizabeth Robertson, director of research at Diabetes UK, said: “The statistics around kidney disease in people with diabetes are shocking – one in five deaths in people with Type 1 diabetes is a result of kidney disease, and this needs to change.”

Advent service at Peterborough Cathedral The charity’s annual candlelit Advent Service takes place at Peterborough Cathedral, on Sunday December 2, at 5:30pm.

This event provides the perfect opportunity for Kidney Research UK to say thank you to our supporters and to share our hopes for future breakthroughs in research.

The Advent Service is also a chance to think about those affected by kidney disease. This year, guests will write a message to a kidney patient, a researcher, a doctor or nurse, or a general message of support, to be displayed on the charity’s Tree of Light at the service.

No tickets are required for this service which is open to the public, for further information call 0300 303 1100 or email: enquiries@kidneyresearchuk.org

The Doctor will see you now Volunteers and staff at Kidney Research UK’s Cardiff shop were caught-up in a web of excitement and secrecy this summer when a film crew asked to hire the shop.

All those involved were sworn to secrecy, but now Dr Who has hit television screens up and down the country, we can reveal what happened.

The film crew spent almost a day filming scenes in the shop and one lucky volunteer, Christine Fowler, was even picked to be an extra in the background.

Left to right: Tams Mukhopadhyay, Jodie Whittaker, Marta and Alicia Sanchez.

Head of retail operations, Dorothy Hardie said: “It was a great day and the crew and cast were so lovely. I think with them having the first female Doctor it was even more thrilling to be involved. They filmed a few scenes inside the shop and the crew and actors all took Kidney Research UK t-shirts home with them. They also made a generous donation to the charity.”

Our Cardiff shop is currently recruiting volunteers.

Anyone interested in getting involved can pop into the shop on 307-315 Cowbridge Road East, Canton, or call 02920 485 595 and speak to Tams, the shop manager, who will be happy to arrange a taster session.

To donate to Kidney Research UK call: 0300 303 1100

CHARLIE’S STORY // P04

The story of a caring Charlie Sutliff’s story is not an easy read and his passing leaves a huge void in the lives of those who loved him. His family remain keen supporters of Kidney Research UK and have chosen to share his story with Update readers as a way of paying tribute to this brave and generous young man.

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escribed by his mum as a warrior who touched the hearts of everyone who met him, Charlie passed away just six months after enduring a massive six-organ transplant.

Charlie’s dad, Barry, and sister Toni, along with most of Charlie’s family, completed our London Bridges Walk in 2017. Charlie and his mum could not make it due to Charlie being in hospital, but sent their support in the hope research will one day put an end to the devastation of kidney disease.

by complications associated with kidney disease. He was just 17.

Charlie’s parents Stephanie and Barry said: “Losing Charlie has left a massive void in our lives and will do forever. We will continue to do these walks as our way of paying tribute to him. Charlie was such a wonderful young man who went through so much. The doctors and surgeons did everything they could and we will always be grateful for that. It’s important to us now that his memory is kept alive and we want to tell his story to raise awareness of how devastating kidney disease can be.”

Charlie was 13 years old when he was diagnosed with nephrotic syndrome due to focal segmental glomerulosclerosis (FSGS). Nearly two years after the FSGS diagnosis and five invasive treatments later, Charlie’s kidneys started to fail.

When he was nearly 15 years old he had a double nephrectomy – which is when the kidneys are completely removed.

The plan was for Charlie to return home and to use peritoneal dialysis (PD) to keep him alive, but in the early hours of the morning following surgery he suffered a stroke.

e walk for Charlie.

Colby and Dolly taking part in their bridg

At this year’s London Bridges Walk, Charlie’s brave cousins, 12-year-old Colby and his five-year-old sister Dolly, crossed the finishing line of their emotional walk, hand-in-hand, with Charlie’s picture proudly pinned to their backs.

The event is always an emotional one but for Colby, Dolly and their family who accompanied them, it was particularly so as only two months prior to the event Charlie’s life had been cut short

Find out more: www.kidneyresearchuk.org

Stephanie said: “At the same time Charlie managed to pull out his temporary dialysis line so his PD line had to be used early. Sadly he developed peritonitis. He then started getting severe abdominal pain and being sick; it turned out he had chronic pancreatitis.

No amount of pain relief helped and he suffered for months. He also had gallstones which added to his pain.”

“After a few weeks Charlie started to look jaundiced and his liver function started to dip. He had numerous visits to the High Dependency Unit for fluid overload and fluid around his heart and for observation because of the amount of pain relief he was on. He also developed nerve damage

to his feet which meant he couldn’t walk or put any weight on them. He was then transferred from Queen’s in Nottingham to Addenbrooke’s Hospital in Cambridge, to be seen by a liver specialist who did loads of tests.”

Charlie became very unwell and he was rushed to intensive care with septicaemia.

He was placed on a ventilator and sedated.

Despite his parents being told to expect the worst, Charlie came back fighting and he was moved from intensive care three weeks later and placed on the transplant waiting list.

In November 2017 he underwent a six-organ transplant operation. He was given a new liver, kidney, pancreas, colon, stomach and small bowel. The operation took 20 hours.

Stephanie and Barry said: “It was the longest 20 hours of our lives; not knowing if your child is coming out of theatre or not is so hard. He had a 50 per cent chance of pulling through. We will be forever, eternally grateful for the amazing gift of life that was given to Charlie.”

Initially the signs were good, but Charlie very sadly passed away six months after the operation, surrounded by his family.

Charlie was a warrior – he was a beautiful and caring young man.

CHARLIE’S STORY // P05

and brave young man The NURTuRE biobank, aiming to help future research Research has brought many breakthroughs in the treatment, care and understanding of people with kidney disease, but Charlie’s story is a stark reminder of how far we still have to go.

Charlie had nephrotic syndrome (NS), in his case believed to have been caused by a throat infection. Nephrotic syndrome is almost always treatable, but in Charlie’s case there were multiple complications involving other major organs.

Charlie looked like any othe r teenager on first glance, yet he faced daily battles with his complicated condition.

Stephanie and Barry said: “The staff at Addenbrooke’s were just amazing, we couldn’t fault them. He died from an infection and of course there are times when we question could more have been done. But sadly it wasn’t meant to be. We keep thinking Charlie is going to walk through the door at any moment and tell us it was all a big joke – that’s the sort of thing he would have done.

He will always be our baby and we miss him terribly.

“Charlie was a warrior – he was a beautiful and caring young man. Even though he was going through an awful ordeal he still made sure he helped others. During his short life he touched the hearts of everyone who met him – from the day he was born to the day he passed away.

“He affected people in a way that only he understood, we can honestly say we don’t think he had one enemy. He was one of life’s characters and there was never a dull

moment. He was a total whirlwind, happy, intelligent, feisty, funny, a gentleman and what you saw is what you got. A lovable rogue who did things the way he wanted them done – not the way you told him to do it.

“We are so privileged to have been given this beautiful soul as our son and to have been able to love and cherish him through his short life. By having a transplant it gave us time to have him for that little bit longer, but he was not ours to keep.”

Stephanie added: “When you look at illnesses like cancer or heart disease everybody has heard of them and understands how serious they are. But with kidney disease it’s very different. I hope that by telling Charlie’s story it helps raise awareness so that any parent facing the same challenges as we did doesn’t feel alone and that research brings better treatments for them in the future. ”

One of Kidney Research UK’s biggest projects is the creation of a biobank of nephrotic syndrome patient samples.

The aim is that in the future researchers looking into new treatments and even a cure for nephrotic syndrome will be able to access the samples for testing.

You can find out more about the biobank, called NURTuRE, on our website at: www.kidneyresearchuk.org/research/ case-studies/nurture We are also funding more than 20 separate research projects specifically looking at understanding FSGS.

NURTuRE has enormous potential to improve treatments for patients with nephrotic syndrome and chronic kidney disease.

Dr Liz Colby, NURTuRE NS study coordinator

To donate to Kidney Research UK call: 0300 303 1100

YOUR QUESTIONS // P06

We answer some of your most frequently asked questions 1

What does my money pay for?

Gifts to Kidney Research UK pay for research into understanding kidney health and disease by some of the UK’s best renal specialists. Over the last year 59 projects have received funding, the most the charity has ever backed. At any point in time the charity funds up 150 studies in universities and hospitals across the UK. Research can take time; it’s often an accumulation of small discoveries, trial and error that very gradually lead to big breakthroughs.

This is very frustrating, as people understandably want answers to their problems. However, research really is the only way breakthroughs into new treatments and care can be discovered, which is why the money we receive is so vital.

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Are we conducting research into itchy skin?

Dr Sabine Van De Veer from the University of Manchester said: “One in five people with kidney disease suffers from itchy skin. However, they do not always discuss

Find out more: www.kidneyresearchuk.org

their itch with the care team, which means that itch often remains untreated, even though effective treatment is available. The ImpRoving Reporting of ITch using AcceleromeTErs (IRRITATE) study – funded by a Kidney Research UK Innovation grant – aims to find out why people do not talk about itch, and how this could be improved. As a first step, researchers from the University of Manchester have interviewed 25 people with kidney disease who have personal experience of itch, as well as 22 doctors and nurses from three renal centres. They found several reasons for why itch may be underreported. For example, patients may not know that the symptom is caused by their kidney disease; patient and healthcare professionals do not bring it up because they think itch cannot be treated; or limited time during the consultation makes people prioritise other, more worrying health issues.

“In the next phase of the IRRITATE project, the researchers will invite 60 kidney patients to help them explore whether wrist-worn activity trackers – or accelerometers – may Dr Sabine Van De Veer

be part of the solution. Accelerometers can detect nocturnal scratching, which is a good indication of being itchy. By wearing an accelerometer around the wrist when they sleep, patients can generate reports that show how badly they have been scratching at night. The researchers expect this to help kidney patients and their doctors to recognise itch as a problem, and to support them in making decisions on how to treat it.”

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Can I donate to a specific project?

Liz Gunson, Philanthropy Manager at Kidney Research UK said: “We want to fund the very best research. Of course, unrestricted gifts are much appreciated as they allow us to put funds where they’re most needed. The bottom line is that your help, however it comes, gives us time in the laboratory (or clinic) so we can stop kidney disease. It is possible to support particular interests if there’s an area that especially excites you – we often run specific appeals for this purpose. The best example is our Making EVERY Kidney Count campaign, which is all about transplantation – every gift towards that campaign, small or large, has helped to take that

YOUR QUESTIONS // P07

For further details on any of the subjects covered, or to find out more about how you can get involved with Kidney Research UK’s fundraising, call 0300 303 1100.

work forward. My advice to anyone thinking about this would be to talk to a member of our fundraising team who are there to help you make those decisions.”

Liz Gunson

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I have kidney disease and I would like to take part in a research project or clinical trial, what should I do?

Patients are experts in living with kidney disease and this insight is essential to inform and develop the best research. This summer Kidney Research UK launched a community group called Kidney Voices for Research.

The group is for patients interested in research, who would like to share their news, stories and personal experiences of being involved in research.

As well as contacting Kidney Voices for Research, patients who would like to be involved with clinical trials should speak to their GP or consultant about any they may be eligible for. They can also visit the UK Clinical Trials Gateway (www.ukctg.nihr.ac.uk) for information about trials running in the UK and the www.clinicaltrials.gov website featuring worldwide studies. If you live in Scotland, try SHARE, an NHS Research Scotland initiative (www.registerforshare.org).

Contact Kidney Research UK’s patient involvement coordinator about Kidney Voices and our clinical trials at: patients@kidneyresearchuk.org

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How is your research having an impact on patients right now?

Dr Rupert Major from the University of Leicester said: “My Kidney Research UK funded research focuses on trying to make better predictions about which patients with kidney disease are more likely to have heart attacks or strokes. We have known for at least the last fifteen years that people with kidney disease are more likely to develop these conditions, but doctors have not always been able to accurately

predict which patients with kidney disease are most at risk. As part of this work, I have visited approximately seventy-five GP surgeries and spoken at regional GP meetings in the last two years, with the aim of improving education, care and research into kidney disease. These visits have hopefully raised the profile of kidney disease and improved the care GPs can offer patients with kidney disease in the East Midlands.

As well as the increased risk of needing dialysis or a transplant, during these talks I have focused on the increased risk of heart attacks and strokes, something that is probably less commonly known by the general public and other medical specialists.

“My research has also started to investigate why people of South Asian ethnicity are more likely to end up needing dialysis or a transplant.

This is an important issue for many families in the East Midlands and I hope my research will help medical care teams provide the best possible care for their patients with South Asian heritage.”

Dr Rupert Major

To donate to Kidney Research UK call: 0300 303 1100

OUR HEROES // P08

Seven things I wish I’d known before my transplant operation Louise Sach and Kayleigh Wakeling share a unique friendship as donor and recipient. Here they reveal to us seven snippets of knowledge they have learned from their journey, which began almost a year ago.

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ransplant operations are momentous, awe-inspiring events affecting so many people in so many ways. For Louise Sach, her transplant journey began when she was 28.

Diagnosed with chronic kidney disease (CKD), at the age of eight, she had long lived with the knowledge she would one day need a new kidney. When that moment came and no match could be found among her family and friends, she turned to Facebook for help. It wasn’t long before her message was stumbled upon by Kayleigh Wakeling (33), a friend of a friend, who had never met Louise. She offered to donate her kidney, a decision that would alter the paths of both women in ways they could never have imagined. Both Kayleigh and Louise are avid supporters of Kidney Research UK and to celebrate their successful operations, this year, just four weeks posttransplant, they attended the charity’s London Bridges Walk event as guests of honour.

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4 Louise and Kayleigh at our London Bridges Walk.

Find out more: www.kidneyresearchuk.org

feel or how fast you will recover. Take your time. Do what feels right, but do not rush yourself.

Louise’s seven transplant tips:

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hat your results WILL bounce T around for a while after surgery, even months afterwards. Seeing a decline in your results is often not permanent.

Seeing blood in your urine after surgery is also normal.

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he overwhelming pride you will feel T for your new kidney when you hear it has ‘woken up’, is working and you see your post-surgery creatinine results for the first time. he friendship I have been so lucky to T build with my live kidney donor and how much I want to share my whole life with her now she has given a me a future. I think before this experience I wasn’t a person who could share their emotions easily, but meeting Kayleigh has taught me to be more open because I have had to be. From the outset we have been able to ask each other awkward questions and that’s been part of the reason why we just seem to click. ow kind, knowledgeable, helpful, H reassuring and caring all the nurses, doctors and surgeons are throughout the process. There was never a moment where I felt unsafe or alone.

T hat no matter how hard you try, how stubborn you are, or how committed you are, you can’t predict how well you will

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hat both strangers and social media T could be so supportive. I started a dedicated kidney Instagram page and a Facebook page, through both of which I found comfort in hundreds of online friends. It meant I could be very raw and open, asking them the questions I was worried about and them giving me a genuine answer from their own experience or what they know. Each person’s journey varies, but it’s important to find friends who completely and truly understand your feelings and fears, as they too have been there. They can also share so many ‘tips’ along the way. hat you should try not to T overload yourself with too many visitors in the first few months.

This is an important point for two reasons: a) You will need your rest.

Even speaking to visitors, as much as you will enjoy it, will be very tiring.

You will feel exhausted focusing on conversations and everyday tasks. You can always build up your visitors over time; b) You’re immunosuppressed and this is probably new to your body – visitors should be careful around you, particularly if they have any contagious illnesses, coughs, or colds. Antibacterial gel will become your new best friend.

OUR HEROES // P09

Louise Sach

Kayleigh Wakeling

Kayleigh’s seven donor tips:

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he incredible change my gift T would give to not only Louise, but also to all of her family and friends who were also holding such a heavy burden. I hadn’t realised how many lives my donation would help. hat the surgery would be less T painful than expected, but the trapped wind was really uncomfortable and peppermint tea would be my best friend. Yes the surgery is uncomfortable at first, but it’s not as bad as I thought it was going to be. I’ve never had surgery in my life so I had no idea what to expect. It sounds funny talking about trapped wind, but if no one tells you that’s all it is, it could be quite alarming. hat if I could do it again, I T would. Unfortunately, as a donor I was only born with one bonus kidney. Before seeing Louise’s Facebook appeal I had never considered being a donor and I had no connection to kidney disease.

I read her appeal and just wanted to help. To be honest, in some ways not knowing Louise made it easier because I felt no pressure to do it, but when I found out I was a match I was overjoyed.

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ow extremely tired I would feel in H the weeks following donation. It’s so important to listen to your body and rest when needed. ow quickly I would be confirmed as H ‘fit’ by the hospital. I had a four-week post-surgery check-up and was fit and healthy to go without another checkup for a year. ow much I would need support H from my family and friends, and knowledge from the online friends I made through the donor ‘Donate UK’ page I found on Facebook.

ow I would feel every day seeing the H positive change in Louise, seeing how happy she is, and watching her take back control over her life. I feel overwhelmed with so much happiness and pride knowing Louise is getting better because of my little kidney. I definitely feel different. I have this complete sense of achievement and pride which I didn’t have before. I feel so happy to have done something so life-altering for someone else – it’s really lovely.

If you have any concerns after becoming a donor or having a transplant operation, speak to your consultant at the earliest possible opportunity.

I feel overwhelmed with so much happiness and pride knowing Louise is getting better because of my little kidney.

I definitely feel different. I have this complete sense of achievement and pride which I didn’t have before.

For more information to help recipients and donors prepare for a transplant operation, visit: www.kidneyresearchuk.org/healthinformation/kidney-transplants

To donate to Kidney Research UK call: 0300 303 1100

DIALYSIS CARE // P10

Dialysis nurses and the care they give Dialysis is by no means a perfect solution, yet it keeps a person alive who would otherwise be unable to survive without functioning kidneys. Here we talk about life on renal wards, where haemodialysis is provided and how the staff and patients make sure it is as positive an experience as possible.

I am mindful of helping people to make it as easy as possible. I think more could be done to help people with the mental effects of living with a long-term health condition, because it affects all areas of their lives as well as having a knock-on effect on their family and friends.

Find out more: www.kidneyresearchuk.org

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urses and staff on a renal ward who understand the enormity of what their patients are facing will do all they can to make sure the treatment they are providing is as effective as possible.

At Peterborough City Hospital renal unit, where 86 people are being looked after, patients are given food if appropriate, their own televisions to watch and are treated with warmth and respect. They are also encouraged to bring a friend or family member along for support – one patient even takes his guide dog.

There is a sense of family on the ward and the staff are only too willing to chat with patients or help fill out forms or answer any questions they might have.

Julie Lewis, administration assistant at the unit, said: “I write a newsletter which goes to all the patients once a month. It has pictures of events, recipes and useful information.

They get it with their blood results and it

just helps to keep them informed as well as giving them something interesting to read while they are sat here having dialysis.

“Patients are encouraged to hook themselves up to the machine if they feel happy doing it as it gives them some control over their treatment, or we can train a family member to do it for them. We recently organised a free trip to Skegness and quite a lot of them went, which was really nice. I will also do what I can to move people’s sessions around if they can’t make a particular day.

“I am mindful of helping people to make it as easy as possible. I think more could be done to help people with the mental effects of living with a long-term health condition, because it affects all areas of their lives as well as having a knock-on effect on their family and friends.”

Kidney patient Eric Wright has been receiving dialysis treatment at Peterborough for three years. He has never missed a session and is grateful to the nurses and

DIALYSIS CARE // P11

Dialysis is not easy for anyone and we appreciate that, but, at the end of the day it’s the thing that keeps them alive and it’s important to attend.

Rachel Cox, renal specialist nurse

be here. I know it’s a nightmare, it’s messed my life up. I used to go on holiday three or four times a year and we can’t do that anymore. Although we still get away at least twice a year now and the renal unit are brilliant at helping me to sort out the dialysis treatment while I’m away.

“Lots of people grumble about dialysis but the nurses are fantastic. The NHS is amazing and I’m grateful for their care and for keeping me alive.”

Rachel Cox is a renal specialist nurse from Scotland, who donated one of her own kidneys to a stranger, last year.

She said: “As soon as we have people on the unit they get a cup of tea and toast, a biscuit, or soup if it’s in the evening.

This isn’t something every unit does. We also try to keep people in the same area so they get to know the people around them – that social side of things is so important as it can make the experience so much better for them.

“You won’t be surprised to hear we have quite deep friendships form on the unit.

“Yes, we have people who think they can miss their dialysis treatment and get away with it. We try to discourage it but there’s not a lot you can do. The problem is they may think they have got away with it and not realise or appreciate how it is storing up problems for them further down the line.

staff who look after him. He said: “I had kidney stones for many years and I had throat cancer – but it’s not something I worry about, you have to get on with it.

“Dialysis can be very hard but at the end of the day it’s keeping the patient alive. It tends to be a heart attack or too much fluid, these are the two things that can lead to serious if not fatal consequences. Missing dialysis sessions can have an impact on a patient’s survival without doubt.

“At the end of the day these machines are keeping me alive, without them I wouldn’t

“I think with younger patients dialysis can be very hard. It’s difficult at a time when

Rachel in the Renal unit

they want to be sociable and their friends are out doing things when they are forced to have dialysis treatment for hours on end. It’s not surprising they may feel they are missing out. The tiredness they may feel can also be a problem because dialysis is a tiring business, three times a week, for the rest of your life unless you can have a transplant.

“To try and improve things for patients we are really encouraging home dialysis.

If this isn’t something they want to do we also encourage patients to take control of their treatment by hooking up to the dialysis machine on their own.

This can have a quite a positive affect as patients can regain some control over their own treatment.

“Dialysis is not easy for anyone and we appreciate that, but, at the end of the day it’s the thing that keeps them alive and it’s important to attend.”

The Shared Haemodialysis Care Project Kidney Research UK is currently funding and assisting with a number of research projects looking at improving the health and overall wellbeing of patients on dialysis. One project supported by the charity is the Shared Haemodialysis Care Project, led by a team at Sheffield Teaching Hospitals NHS Foundation Trust. Similar to how Julie and Rachel describe encouraging patients to hook up to a dialysis machine on their own, the project is seeking to evaluate a formal programme of support which empowers patients to become more independent in understanding and managing their own dialysis. This is currently being delivered through 12 renal units across the country. You can find out more about these projects and others on our website at www.kidneyresearchuk.org

To donate to Kidney Research UK call: 0300 303 1100

RESEARCHER RESEARCH ROUND PROFILE UP //// P10 P12

Tailoring research to patients’ needs Patient viewpoints and experiences are the driving forces behind two very different studies linked to IgA Nephropathy (IgAN) – a common chronic kidney disease which mainly affects young adults.

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ne study seeks to develop a simple patient-friendly method of detecting the condition and predicting possible disease progression while the other aims to provide patients with the digital IgAN information they want via their preferred social media channels.

Dr Izabella Pawluczyk, from the Department of Infection, Immunity and Inflammation at the University of Leicester.

Kidney Research UK is helping to fund both projects and the work is being carried out by teams led by Professor Jonathan Barratt and

Many people don’t realise they have the condition until it has damaged their kidneys and there is currently no specific treatment

In IgAN a protein called immunoglobulin A (IgA) becomes trapped in the very fine filters of the kidney, causing damage and scarring to the whole kidney.

In search of vital markers Doctors can only diagnose IgAN by using a medical procedure called a biopsy to take small samples of the kidney away for testing. But biopsies are invasive, can be uncomfortable and can occasionally cause bleeding and infection. So Dr Pawluczyk and PhD student Jasraj Bhachu have been testing the viability of a simple blood test as a safer and more patient-friendly method of IgAN diagnosis and/or prognosis.

Using our £35,660 John FeehallyStoneygate Innovation Grant, they have been analysing blood from 120 people (some with IgAN, some with another chronic kidney disease and others with healthy kidneys).

They wanted to see if they could identify biological ‘markers’ which could indicate whether a person has IgAN and whether their disease is likely to progress.

Jasraj said: “We have been focusing on tiny strands of molecules in the blood called microRNAs which, when behaving correctly, help to ensure that genes function properly.

“By comparing samples and analysing their microRNA profiles we think we may have uncovered microRNA markers present in IgAN patients which have the progressive form of the disease.

“I now intend to study patient microRNA profiles from blood samples that have been collected over a period of time to see if we can discover whether these markers could possibly predict if patients’ IgAN is likely to progress.”

The finding of this study could result in blood tests replacing biopsies and could eventually lead to the development of new treatments to prevent IgAN or halt its progression.

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other than strict blood pressure control.

Around 30% of IgAN patients will go on to lose kidney function and will require a transplant or life on dialysis. There are currently no reliable tests available to predict which of these patients, known as ‘progressors’, will lose their kidney function.

RESEARCH YOUR MESSAGES ROUND//UP P15 // P13

Living with IgAN To find out more about life with IgAN and the research work being carried out at Leicester University watch these three short videos on YouTube: bit.ly/2PQGkwY bit.ly/2NlU59W bit.ly/2xx2PPS

Finding better ways to communicate Many young patients with IgAN are unable to find relevant and reliable online information about their condition so they are increasingly turning to social networking sites in their search for answers and support.

“We want as many people as possible to get involved and we will be sharing updates and seeking feedback online and in person at IgAN patient support group meetings and information days.”

Professor Barratt and his team want to address this problem by working with patients to find out exactly what they want to know, how they would like the information presented to them and how they would like to receive it.

If you are an IgAN patient and would like to take part in the project, please email Professor Barratt at jb81@le.ac.uk

Supported by our £38,000 John FeehallyStoneygate Research Award, they have teamed up with data experts at Salford University and healthcare technology company DataTellsLife to analyse thousands of anonymised IgAN patient posts from Twitter, Instagram and Facebook.

Professor Jonathan Barrett at a IgAN patient day in Leicester.

These findings will be used to develop new materials and resources (such as videos, infographics, podcasts and written information), in consultation with patients, healthcare professionals and academics.

The resources will then be available to patients via their preferred social media channels and on specially created websites. Feedback will also be sought to ensure that the new information meets their requirements.

Professor Barratt said: “This two-year project is a 21st century digital solution to understanding patient need and developing resources in partnership with patients.

To donate to Kidney Research UK call: 0300 303 1100

SALT CONTROL // P14

Solving the mysteries of salt control Three interconnecting studies are helping to reveal how messages sent between our brains and kidneys are able to control salt levels in our bodies.

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e all need salt to live but modern diets and lifestyles has resulted in us all eating far too much. The World Health Organisation recommends that we should eat no more than 5g of salt per day but most of us are eating almost 50 per cent more – a lot of it hidden in ready prepared or processed foods.

Professor Matthew Bailey, reader at the University of Edinburgh, has been studying the mysteries of biological salt control for many years. In 2014 we gave him a £127,000 research grant to investigate how diabetic patients’ kidneys deal with salt.

This can increase our chances of developing high blood pressure which, in turn, can increase our risk of developing kidney damage, heart disease and stroke.

“Our kidneys control blood pressure and when that goes wrong high blood pressure damages the kidneys,” said Professor Bailey.

“This makes it even more difficult for the kidneys to control blood pressure and so we get into this vicious cycle which operates in a number of diseases that affect renal function – and in the middle of it all is salt.

But the solution isn’t as simple as just dietary self-control. Sometimes things go wrong with our own internal salt regulation systems which can leave us craving salty foods, even when our kidneys are unable to excrete excess salt.

“The kidney is a really important organ for regulating blood pressure. It does this

...we’re investigating how the gene helps the kidneys to control blood pressure and handle salt. This will hopefully pave the way for a much bigger study to help us really unravel how the brain and the kidney talk to each other...

Professor Matthew Bailey

Find out more: www.kidneyresearchuk.org

by controlling the amount of salt that is in the body and therefore the volume of the blood. If blood pressure gets too high, the kidney senses this and excretes salt and water to lower blood volume and bring pressure back down to normal. This process – the connection between blood pressure and salt excretion in the urine – is called pressure natriuresis. It operates by kidney blood vessels and tubules talking to each other, but what we found was that in some really early stages of diabetes (a disease which causes high blood pressure) the vessels and tubules stop talking.

“We’re now trying to find ways to reestablish these conversations between the two kidney components by identifying the molecules that are responsible for disrupting communications. We then hope to try to correct the problem using a drug – possibly one that’s already being used to treat other conditions.”

In a parallel study investigating the workings of a gene that is known to be linked with high blood pressure in humans, Professor Bailey and his team discovered that it also helps to regulate salt consumption.

SALT YOUR CONTROL MESSAGES // P15 // P15

Salt-smart meal ideas If you have kidney disease and need to follow a restricted low-salt diet take a look at the delicious recipes in our free cookbook, specially created by top chef Lawrence Keogh and Renal Dietician Diane Green.

To download your free copy visit: bit.ly/2AmpktF

to control blood pressure and the amount of salt we eat and excrete. By fully understanding this process and why it sometimes goes wrong we can then devise ways to keep these vital organs in constant conversation.”

“The study helps us understand a genetic drive to consume salty food and those same gene pathways also seem to determine the way we respond to salt, in terms of blood pressure,” said Professor Bailey.

In this study, which was funded by the British Heart Foundation, mice were genetically engineered to alter a single gene only in the brain, leaving the gene in the kidney to function as normal. Doing this caused the animals to develop a strong salt hunger so that they consumed three times more salt every day than did ordinary mice. The salt intake caused blood pressure to rise and impaired kidney function. Removing the option to consume salt allowed blood pressure to return to normal levels.

“Understanding how this process works may help us to reduce the amount of salt we eat and make it easier for people to follow low-salt diets.

“These findings enabled me to obtain a £40,000 innovation grant from Kidney Research UK to delete the same gene from the kidney, while leaving the brain intact.

“So now we’re investigating how the gene helps the kidneys to control blood pressure and handle salt. This will hopefully pave the way for a much bigger study to help us really unravel how the brain and the kidney talk to each other

Elaine Davies, director of research at Kidney Research UK said, “Salt consumption and high blood pressure are key risk factors for our kidneys and other related cardiovascular health problems. Professor Bailey’s work supported by Kidney Research UK and the British Heart Foundation demonstrates the importance of advancing our knowledge into these complex health problems. Our recently announced partnership with Diabetes UK will also help us address the complex multimorbidity health challenges.”

To see Professor Bailey talk more about his studies visit: bit.ly/2OhyEUd or bit.ly/2MYswyw

Five ways to five grams Health and nutrition experts World Action on Salt and Health are working with governments and food manufacturers to reduce salt content in food and help the public make simple changes to their eating and purchasing habits. To mark World Salt Awareness Week 2018, they created five ways to five grams* to help people bring their salt intake down to safer levels.

Gradually add less salt to your favourite recipes – your taste buds will adapt.

Check food labels before you buy to help you choose less salty options.

Use herbs, spices, garlic and citrus in place of salt to add flavour to your food.

Drain and rinse canned vegetables and beans AND eat more fruit and vegetables.

Take salt and salty sauces off the table so younger eaters won’t develop the habit of adding salt.

*Information obtained from www.worldactiononsalt.com/awarenessweek

To donate to Kidney Research UK call: 0300 303 1100

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