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Issue 147: August 2026

IN TOUCH WELCOME If you are a new reader, welcome! Our monthly In Touch e-newsletter is your go-to source for the latest updates from the National Kidney Federation.

You’ll also find opportunities to get involved, whether through fundraising or simply to help raise awareness.

Whether you’re a patient, family member, a healthcare professional or a supporter, this newsletter is designed to keep you informed and connected.

Thank you for supporting our charity, we hope you enjoy this issue!

Each month, we share the latest updates in the renal world, highlight upcoming events and campaigns and provide updates on the work we’re doing to support kidney patients across the UK.

All the best, The National Kidney Federation

CONTENTS News: 2, 6, 7, 8, 9, 10, 12, 13, 14 Helpline Information: 15 Fundraising: 3, 4, 5, Patient Involvement: 16 Advert: 17

NEWS

Issue 147: August 2026

Come for the speakers, stay for the people! The NKF Annual Event 2026 is your chance to meet others, hear from experts and patients, discover what’s new in kidney care and enjoy a brilliant weekend together. FRIDAY 2 OCTOBER Catch up with old friends and make some new ones before the main event begins. You’ll have the chance to explore Blackpool, take a stroll along the seafront, see the famous illuminations or simply find somewhere to relax and enjoy the evening with others. SATURDAY 3 OCTOBER – THE MAIN EVENT Expect a packed day of expert and patient speakers, informative sessions, the latest updates in kidney care and a fantastic exhibition hall where you can meet organisations working across the kidney community. We’ll also be joined by the NKF Helpline, Rapidcare, KQuIP, Davita, BookDialysis, KDARS, Kidney Research UK, Robert Dangoor Partnership, Dialysis Society, Independence Products, Diaverum, Salford University, PKD Charity, Mesogeios and many more. There will also be a fundraising stand where you can purchase your Christmas cards early and support a great cause. SATURDAY 3 OCTOBER – FOOD, FUN & QUIZ! Join us for a Saturday evening hot buffet and quiz. The buffet is FREE for the first 150 people to register, thanks to our generous sponsors. Winners of the quiz will be gifted a bottle of champagne kindly sponsored by Stanningley Pharma.

Spaces are filling quickly, so don’t leave it until the last minute to book!

Find out more or book today: www.kidney.org.uk/Event/nkf-annual-event-2026 0800 169 09 36

helpline@kidney.org.uk

www.kidney.org.uk

Issue 147: August 2026

UPCOMING FUNDRAISING EVENTS IN 2026/27 SEPT 26

LONDON TO PARIS CYCLE RIDE

OCT 26

NATIONAL THREE PEAKS CHALLENGE

SEPT 26

RUN FOR ALL SHEFFIELD 10K

APRIL 27

LONDON LANDMARKS

APRIL 27

MANCHESTER MARATHON

13 27

SEPT 26

BEN NEVIS TREK

KILIMANJARO TREK

And so much more!

We are working with Run For Charity and Global Adventure Challenges to offer dozens of events, both close to home and abroad, now and in the future. Check them out here:

RUN FOR CHARITY

GLOBAL ADVENTURE CHALLENGES

For more details or queries on how to sign up for a fundraising event, please contact suzanne@kidney.org.uk www.kidney.org.uk 0800 169 09 36 helpline@kidney.org.uk 413

ISSUE 135 SEPTEMBER 2025

BECOME A MEMBER Join the NKF Community and Make a Difference. https://bit.ly/nkfmembership

JOIN NOW!

From as little as £3 a month—you can join the NKF community. Your membership will help us continue providing essential support to kidney patients and their families across the UK.

Why join the NKF? Support vital patient services — your membership helps fund our free Helpline, Peer Support, and advocacy across the UK. Receive exclusive member benefits What you get 10% OFF Voucher Discount on selected items in the NKF online shop plus exclusive member only discount days. Invites to special NKF events and discounted entry to our Annual Event. Early notice of upcoming sales, campaigns, events and more.

Your membership helps do so much Keep our Helpline running - the NKF Helpline is a lifeline for thousands of patients. Many call when they need immediate help, guidance or just someone who understands. Membership donations help ensure this free service remains available. Fund educational support - our library of kidney health leaflets (PIF-certified) stays current and free for patients, renal units, and GPs. Your membership helps us create and distribute these resources nationwide. Advocate for better care and policy — with member support we campaign for improved kidney care, influence policy, and push for accessible treatments across the UK. Support local Kidney Patient Associations (KPAs) — your contribution helps sustain over 50 KPAs across the UK, strengthening local support networks and patient voices.

Together, we can bring hope and support to kidney patients and their families across the UK. Join now https://bit.ly/nkfmembership 5

NEWS

Issue 147: August 2026

HELP US CONNECT MORE KIDNEY PATIENTS WITH NKF SUPPORT We’re looking for enthusiastic volunteers to join us as NKF Community Ambassadors, helping us increase awareness of the NKF and the services available to people affected by kidney disease. As an NKF Community Ambassador, you’ll help us build a stronger presence in your local area by ensuring our information is available and easy to find in the places where kidney patients and their families regularly visit. We’re particularly keen to have a presence across renal and dialysis units, outpatient clinics, hospital waiting areas, GP surgeries and primary care settings, wherever this is possible. By keeping NKF leaflets and posters visible and up to date, you can help people discover our range of free support services, including our Freephone Helpline, Peer Support Service, information library and patient campaigns. A leaflet in the right place, a refreshed poster or a conversation with a member of healthcare staff could be the first step for a patient or family member in finding the information and support they need. What does an NKF Community Ambassador do? The role involves: Visiting healthcare and community settings in your local area. Displaying and replenishing NKF Helpline leaflets and posters. Helping raise awareness of the NKF and the support we provide. Developing positive relationships with healthcare professionals, reception teams and other staff. Representing the NKF in a friendly, approachable and positive way within your community. Learn more: www.kidney.org.uk/community-ambassador

0800 169 09 36

helpline@kidney.org.uk

www.kidney.org.uk

NEWS

Issue 147: August 2026

NEW INDEPENDENT ANALYSIS DEMONSTRATES THE IMPACT OF NKF PEER SUPPORT SERVICE We are pleased to share the findings of an independent analysis of the National Kidney Federation's Peer Support Service, covering referrals between 2021 to 2026. Conducted by independent statistician Diana Allen, the report demonstrates how peer support is making a meaningful difference to people affected by kidney disease while providing access to trained volunteers with lived experience via the NKF Helpline. Key findings include: 2025 was the service's busiest year on record. Volunteers support people at every stage of the kidney journey. Median set up time: one day; 87% of referrals resulted in completed support. Peer support has been shown to reduce anxiety and boost confidence in treatment decisions. Peer support has been proven to be a vital part of kidney care, ensuring no one faces kidney disease alone. Read the analysis report here: www.kidney.org.uk/peer-support Request a peer supporter online - visit our website (link above) to fill in a referral form Call our Freephone Helpline (quickest option) 0800 169 09 36 Email us - helpline@kidney.org.uk

0800 169 09 36

helpline@kidney.org.uk

www.kidney.org.uk

NEWS

Issue 147: August 2026

INTRODUCING CKD CONNECT When people think about the National Kidney Federation, they often think of our Helpline, Peer Support Service, educational leaflets and webinars. These are the services you see, and they are at the heart of what we do. What many people don't see is the work that goes on behind the scenes to improve the care and support available to kidney patients across the UK. Every week, we meet with healthcare professionals, NHS organisations, government representatives and industry partners to champion the needs of kidney patients. We work to ensure that the patient voice is heard and that improvements are made, not just for today, but for future generations of people living with kidney disease.

As part of the campaign, CKD Connect will: Help healthcare professionals improve the early identification and management of CKD. Promote consistent, high-quality information We are pleased to introduce CKD Connect, a and support for people living with kidney new national initiative from the National Kidney disease. Federation, designed to improve the care and support available for people living with chronic Bring together healthcare experts and kidney disease (CKD). policymakers to help shape future improvements in CKD care across the UK. More than 7 million people in the UK are living Early diagnosis and good management can with CKD. Many people are diagnosed in the make a real difference in slowing the early stages of the condition but receive little progression of CKD and supporting people to information or follow-up support. CKD Connect live well with the condition. has been developed to help change this by improving awareness, education and support If you would like to find out more about CKD, for both healthcare professionals and people access trusted information or learn about the living with CKD. support available, please visit the National Kidney Federation website: The project will help healthcare teams www.kidney.org.uk. recognise and manage CKD earlier, ensuring people receive the right information and Thank you for your continued support as we support from the point of diagnosis and work towards improving kidney care for throughout their care journey. everyone. 0800 169 09 36

helpline@kidney.org.uk

www.kidney.org.uk

NEWS

Issue 147: August 2026

NKF WEBINAR

Are you tired of your health information being trapped in different hospital systems? Join us to learn how to put your complete medical record back where it belongs: in your hands. Your care doesn't happen in just one place. You might see a GP, visit a local hospital for dialysis, consult a specialist at a major renal centre in another city, or travel for a transplant. But many hospitals are moving to their own portals, and whilst they say they are helping patients, it actually means your data is trapped in separate digital siloes. You are left trying to log into multiple systems, repeat your story, and bridge the gaps yourself. Whether you are completely new to Patients Know Best (PKB) or just want to learn how to use it better, this webinar is for you. We are going back to basics to show you how PKB connects all your records into one single, secure space that you own and control. To register your free place, please fill in the registration form on our website here: www.kidney.org.uk/Event/nkf-webinar-series

DISCOVER THE NKF YOUTUBE CHANNEL From expert led webinars and patient stories to practical advice on living well with kidney disease, there’s something for everyone on our YouTube channel. Watch, learn and stay informed and don’t forget to subscribe: www.youtube.com/@nationalkidneyfederation5995/videos

0800 169 09 36

helpline@kidney.org.uk

www.kidney.org.uk

NEWS

Issue 147: August 2026

7 MILLION LIVES AT RISK: WHAT’S THE PLAN? Over the past 6 months, the kidney community has been campaigning to policy makers for a Kidney Disease Modern Service Framework. A programme of listening events, Voices to Vision, has brought together over 450 patients, healthcare professionals, charity and community partners to help shape a national strategy for kidney disease. This joint campaign is represented by Kidney Care UK, Kidney Research UK, the National Kidney Federation, PKD Charity, the UK Kidney Association, clinical representatives including devolved nations, the National Clinical Director for renal and National Specialist Advisor for paediatric renal medicine, together with two patient experts. We continue to seek views through a Listening Survey which is open to professionals, patients and carers until 30th September 2026. We are also holding a virtual primary care listening event on Tuesday 15th September, and two final virtual listening events for patients and carers on Monday 22nd and Tuesday 23rd September. You can sign up and take part in these opportunities using the link below. www.kidney.org.uk/msf-update

0800 169 09 36

helpline@kidney.org.uk

www.kidney.org.uk

NEWS

Issue 147: August 2026

REIMBURSEMENT TOOLKIT FOR HOME DIALYSIS - UPDATED A toolkit to support reimbursement of additional utility costs for home dialysis has now been updated. The home dialysis utility reimbursement calculator helps trusts accurately calculate reimbursement for the additional electricity and water costs incurred by patients receiving dialysis at home. The updated document includes calculators for: - Automated Peritoneal Dialysis - Continuous Ambulatory Peritoneal Dialysis - Home Haemodialysis To download the updated Home Dialysis Utility Reimbursement Calculator (July 2026 - March 2027) or to find out more information visit: www.kidney.org.uk/news/new-reimbursementtoolkit-for-home-dialysis

KIDNEY PATIENT REPORTED EXPERIENCE MEASURE (PREM) 2025 ANNUAL REPORT OUT NOW The UK Kidney Association (UKKA) has released the Kidney Patient Reported Experience Measure (PREM) Report for 2025. The report presents how people living with kidney disease rated their experience of kidney care over the past year. It aims to help healthcare teams understand patients’ experiences, identify areas where care could be improved, and provide the UK Renal Registry with a national overview of people’s experiences of kidney care. To read the full Kidney PREM 2025 Annual Report, please visit: www.kidney.org.uk/news/kidney-patient-reported-experience-measure-prem-2025annual-report-out-now

0800 169 09 36

helpline@kidney.org.uk

www.kidney.org.uk

NEWS

Issue 147: August 2026

NKF PEER SUPPORT AND HELPLINE BANNER TAKES A DAY TRIP Our Peer Support and Helpline banner enjoyed a day out at Walton-on-the-Naze with the Royal Free Hospital Kidney Patients’ Association (RFHKPA). With two 59-seater coaches and ambulance buses for wheelchair users, it was a fantastic day bringing the community together. The banner certainly attracted attention, with members of the public taking photos of it so they could share the helpline details with people they know who may be affected by kidney problems. Despite the strong winds, the banner held up well and there’s even talk of taking it on a round-Britain tour! One family member is planning to climb Ben Nevis next year and has offered to take the banner along for the journey. To learn more about RFHKPA visit: https://rfhkpa.org/

REGISTERING YOUR DECISION NHS Blood and Transplant is calling on one million people across the UK to make and record their organ donation decision before the end of 2026, as new figures highlight the importance of families knowing their loved ones’ wishes. Family support for organ donation has fallen to 57%, according to NHS Blood and Transplant. However, the organisation says that when families know a loved one had made their wishes clear, almost 90% support donation going ahead. The figures underline the importance of having a conversation with family members and recording an organ donation decision, whether the decision is to donate or not. By registering a decision on the NHS Organ Donor Register and making loved ones aware of their wishes, people can help ensure their choice is understood at what can be an incredibly difficult time for families. With one conversation and one decision, people could potentially make a life changing difference to someone waiting for a transplant. For more information about the campaign, the latest figures and how to record your decision, read the full press release: www.kidney.org.uk/nhs-blood-and-transplant-urges-one-million-people-torecord-organ-donation-decision-by-end-of-2026 0800 169 09 36

helpline@kidney.org.uk

www.kidney.org.uk

NEWS

Issue 147: August 2026

BRITISH TRANSPLANT GAMES Last week we had the pleasure of joining the British Transplant Games at the English Institute of Sport in Sheffield, an event that brought together an incredible community of transplant recipients, donors, families, supporters and friends. The Games were a wonderful celebration of what can be achieved after transplant, with competitors taking part in a fantastic range of sporting events. It was inspiring to see and we were proud to be there to support everyone taking part. Our team also had a brilliant time meeting so many people at our stand. Thank you to everyone who stopped by to chat with us. We were also delighted to be alongside our friends at SAKA – Sheffield Area Kidney Association, who helped make the day even more special. A big thank you to everyone who showed their support by purchasing an NKF T-shirt or banger. Congratulations to everyone who took part, and thank you to everyone who helped make the Games such a memorable celebration of the transplant community. We’re already looking forward to next year in Birmingham!! If you missed the chance to pick up a T-shirt at the Games, you can still browse our online shop and show your support: www.kidney.org.uk/pages/shop/department/tshirts

ARE YOU AN ADULT LIVING IN SCOTLAND, RECEIVING DIALYSIS AND TAKING MEDICATION FOR ANAEMIA? The Scottish Medicines Consortium are assessing a new medication for treating anaemia in adults receiving dialysis and would like to understand how anaemia and any current medications are impacting patients. If you would like to share your experience, please email lucy@kidney.org.uk by Friday 21st August. 0800 169 09 36

helpline@kidney.org.uk

www.kidney.org.uk

NEWS

Issue 147: August 2026

CELEBRATING ZOE BUCHANAN’S OUTSTANDING ACHIEVEMENT A huge congratulations to Zoe Buchanan, Chair of Gloucestershire KPA and member of the NKF Executive Committee, who was recently presented with the prestigious Peter Griffin Award at the British Transplant Games. The award recognises outstanding individual achievement and celebrates someone whose contribution to transplant sport goes beyond their own sporting success. Zoe is a hugely deserving recipient, having competed at British and international events while always encouraging and supporting others taking part. Zoe had another fantastic Games this year, winning three gold medals in squash, table tennis and badminton doubles, where she was partnered by her fiancé, Lucy. She also took on the role of Team Manager for Bristol Adults, supporting her team and helping others get the most from their Games experience.

Zoe (right) with Hannah (left), who donated a kidney to Zoe in May 2025

The Games hold a particularly special place in Zoe’s heart. It was through competing that she met Lucy, and she also met the person who would later become her living donor for her second kidney transplant. For Zoe, the Games are about much more than competition – they are about friendship, community and the life-changing connections made along the way. Away from transplant sport, Zoe has recently become Chair of Gloucestershire KPA, where she is already doing a fantastic job supporting and representing kidney patients in the area. Zoe’s Peter Griffin Award is a wonderful recognition of her commitment, enthusiasm and the positive impact she has on those around her. Congratulations, Zoe, from everyone at the NKF!

0800 169 09 36

helpline@kidney.org.uk

www.kidney.org.uk

HELPLINE

Issue 147: August 2026

REFLUX NEPHROPATHY What is Reflux Nephropathy? Reflux nephropathy is a form of kidney damage caused by vesicoureteric reflux (VUR), a condition in which urine flows backwards from the bladder towards the kidneys instead of leaving the body normally. Over time, this backward flow can lead to repeated urinary tract infections (UTIs) and scarring of the kidney tissue. The condition is backwards from the bladder. Urine and most often associated with childhood but its blood tests may also be used to assess effects may continue into adult life. kidney function and identify infection. What causes it? Treatment Normally, the ureters (the tubes linking the Treatment focuses on preventing further kidneys to the bladder) enter the bladder at an kidney damage. UTIs should be treated angle that helps prevent urine from flowing promptly, and some children may be backwards. In people with VUR, this valve-like prescribed low-dose antibiotics to reduce mechanism does not work properly. As a result, the risk of recurrent infections. In severe urine can reflux up towards one or both kidneys. cases, surgery may be considered. Blood Most cases are present from birth due to an pressure control is also important. Although abnormality in the way the urinary tract develops existing kidney scars cannot be removed, before birth. careful monitoring and treatment can help protect remaining kidney function. How does kidney damage occur? Not everyone with VUR will develop reflux Long-term outlook nephropathy. Kidney damage usually occurs Many children with mild VUR outgrow the when reflux is associated with repeated kidney condition as they get older. However, people infections, particularly in infancy and early with established reflux nephropathy often childhood. These infections can leave permanent require long-term follow-up because kidney scars in the kidneys. In some cases, severe reflux scarring may increase the risk of high blood may also be linked with abnormal kidney pressure, proteinuria and chronic kidney development before birth. The resulting scarring disease later in life. Regular monitoring is known as reflux nephropathy and cannot be allows complications to be detected and reversed once it has occurred. managed at an early stage. Symptoms Disclaimer Children with VUR may have recurrent UTIs, fever, The National Kidney Federation cannot pain when passing urine, frequent urination, or accept responsibility for information poor growth. Some children have no obvious provided. The above is for guidance only. symptoms and are only diagnosed after Patients are advised to seek further investigations. Adults may develop high blood information from their own doctor. pressure, protein in the urine, reduced kidney function, or chronic kidney disease. Further Information To request our full leaflet about Reflux Diagnosis Nephropathy or any other patient Diagnosis often involves imaging tests such as information leaflet from our library, please an ultrasound scan of the kidneys and bladder contact the NKF Helpline: and a micturating cystourethrogram (MCUG or helpline@kidney.org.uk or call VCUG), which shows whether urine is flowing 0800 169 0936. 0800 169 09 36

helpline@kidney.org.uk

www.kidney.org.uk

PATIENT INVOLVEMENT

Issue 147: August 2026

NKF KPA MEMBERS Currently there are 54 Kidney Patient Associations (KPAs) who are members of the NKF. Please find the details below of the KPAs available or for more information please contact the NKF office on 01909 544 999 or email chris@kidney.org.uk.

Chris Talbot NKF Membership Development Lead If you are a KPA that would like to become an NKF member, please contact chris@kidney.org.uk or call 07908 845713. We are proud to support KPAs and to be the patient voice across the UK. Find your local KPA today: www.kidney.org.uk/kidney-patient-associations If you live in the York area, keep an eye out for a new KPA coming soon!

PATIENT PARTICIPATION OPPORTUNITIES Discover opportunities to share your experience and support kidney research. The NKF has created a page online where you can explore all the current opportunities to take part in studies, surveys and interviews run by healthcare professionals and medical students. These projects aim to deepen understanding of kidney disease and your insights could make a real difference. https://shorturl.at/Ssw9V

0800 169 09 36

helpline@kidney.org.uk