Issue 138: December 2025
IN TOUCH WELCOME As we reach the end of another year, we’d like to give a warm festive welcome to all our readers and an extra special welcome to anyone joining us for the first time. Our monthly In Touch e-newsletter continues to be your go to source for the latest news and updates from the National Kidney Federation. Whether you’re a patient, a family member, a healthcare professional, or a valued supporter, we’re grateful to have you with us. Each edition brings you the latest developments from the renal community, highlights key events and campaigns, and shares the ongoing work we’re doing to support kidney patients across the UK.
You’ll also find plenty of ways to get involved from fundraising opportunities to helping us spread awareness far and wide. As we wrap up the year, we want to thank you for your incredible support you’ve shown. Your kindness and commitment makes a real difference to our charity. We’re excited to step into 2026 and ready to make even more positive changes together. Wishing you a Merry Christmas and a Happy New Year. The National Kidney Federation
CONTENTS News: 2-8 Advert: 9 Helpline Information: 10-11 Patient Involvement: 12 Fundraising: 13-15
Contact Us NKF Helpline: Call: 0800 169 09 36 | Email: helpline@kidney.org.uk Website: www.kidney.org.uk
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NEWS
ISSUE 138 DECEMBER 2025
NKF CHRISTMAS CLOSURE We will close on the afternoon of Wednesday 24 December 2025, and will reopen at 08:30am on Friday 2 January 2026.
If you need any help or support during the Christmas period, please take a look at our FREE Helpline information leaflets. Helpline information leaflets: www.kidney.org.uk/helpline-leaflets
The NKF and NHS Blood and Transplant (NHSBT) are delighted to invite you to attend a webinar on the progress in using more potential organs for transplantation in the UK and reduce the variations among transplant centres. The webinar will cover the following: Rates of organ utilisation among transplant centres What we are doing to increase organ utilisation rates What information would be helpful for kidney patients on organ utilisation. The main speakers at the webinar will be: Prof John Forsythe, OBE, Senior Clinical Co-Chair (ISOU), DHSC and Prof Derek Manas, Medical Director, Organ and Tissue Donation and Transplantation (OTDT), NHSBT. The webinar will be chaired by Anthony Clarkson, Director OTDT, NHSBT and Kirit Modi, MBE, Hon President, NKF. To register your free place visit: www.kidney.org.uk/Event/nkf-webinar-series 0800 169 09 36
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NEWS
ISSUE 138 DECEMBER 2025
MAKING KIDNEY INFORMATION ACCESSIBLE TO EVERYONE Our online accessibility tool continues to gain popularity each month, and we take pride in offering a user-friendly website accessible to everyone, regardless of language, abilities, or impairments. With Recite Me, you can: Translate pages into 100+ languages Use the text-to-speech reader Adjust font size, colour, and contrast Open a clutter-free “reading ruler” Enable a simple screen layout Currently, the top languages being translated are Hindi, Albanian, Tamil. We are committed to delivering information and support in multiple languages, ensuring that everyone can access the resources they require. Visit our website today at www.kidney.org.uk and click on the accessibility link at the top of the web page. For guidance on how to use the accessibility tool, check out our online guide: www.youtube.com/watch?v=A10Xva5xuzs
HEWORTH GOLF CLUB, YORK RAISED OVER £2,200 FOR NKF THROUGH CAPTAIN’S FUNDRAISING We’re incredibly grateful to Captain Jim Downing and the members of Heworth Golf Club, York for their amazing support. Jim recently presented NKF Treasurer, Geoff Downes, with a cheque for £2,233.47, an incredible total raised throughout his year as captain. Thank you to Jim, the committee, members, and their guests for their generosity and commitment. Their support directly helps people living with kidney conditions every day. 0800 169 09 36
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NEWS
ISSUE 138 DECEMBER 2025
NAVIGATING IGA NEPHROPATHY: HOW KNOWING YOUR NUMBERS CAN MAKE A DIFFERENCE
This article has been commissioned by CSL Vifor and is based on a CSL Vifor funded speaker session at the National Kidney Federation Annual Event 2025. At this year’s Annual Event, Consultant Nephrologist Dr. Lisa Willcocks and patient representative Benjamin Stokes shared valuable insights into managing the numbers that matter most for people living with IgA nephropathy. Dr. Willcocks emphasised the vital role of regular blood and urine tests for people living with chronic kidney disease and IgA nephropathy and explained the three key numbers people should be aware of: proteinuria, estimated Glomerular Filtration Rate (eGFR), and blood pressure. “Understanding and keeping an eye on these key numbers can help you better understand your kidney function and work with your healthcare team to decide how best to keep your kidneys working as well as possible, for as long as possible,” she explained. Benjamin Stokes shared his personal journey following his IgA nephropathy diagnosis in 2012. “When I was first diagnosed I was working as a personal trainer and I didn’t even consider that I might have kidney disease, let alone a particular type of rare kidney disease,” he recalled. “Quite quickly I began to think, ‘well what can I do about this’. I wanted to take control of anything and everything I could to try and prolong the quality of life that I had.” Through asking questions and self-learning, Benjamin moved from feeling anxious and isolated to feeling informed and empowered. He described how, by understanding what he could and couldn’t control, he began to take charge of the things he could. 0800 169 09 36
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Benjamin highlighted the importance of building habits around kidney health. He learned to ask his healthcare team about his results and what the numbers meant for his condition. He also began to manage variables within his control - like hydration, exercise, and diet - before tests. “I wanted to ensure medical decisions were based on the most accurate information possible, and I soon realised that if I had done a workout the day before my tests, for example, my results could really fluctuate, so I tried to maintain consistency where I could,” he said. He encouraged others to build understanding around these numbers and to ask questions like he had done. He also recommended using reliable information resources like the “Tracking Your Numbers” booklet developed as part of the Navigate Your Numbers in IgA Nephropathy campaign.
“Especially as a young person, it can be difficult to talk about being anxious and scared about the future, so just ask questions and there is more information out there now. Don’t put pressure on yourself as a patient, but I couldn’t encourage you more to seek information to empower yourself with knowledge.” By demystifying the numbers and encouraging open dialogue with healthcare teams, Dr. Willcocks and Benjamin Stokes demonstrated that knowledge truly is power when it comes to living well with IgA nephropathy. Navigate Your Numbers in IgA nephropathy (IgAN) is a disease awareness campaign initiated and funded by CSL Vifor with input from the National Kidney Federation and people living with and treating IgA nephropathy.
Scan the QR code below to access the campaign booklet and videos on the National Kidney Federation website.
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NEWS
ISSUE 138 DECEMBER 2025
WATCH NOW: WEBINAR ON MENTAL HEALTH AND DIALYSIS TRAVEL
Taking Care of Your Mental Health Isn’t a Luxury – It’s Essential by the bookdialysis.com team. If you missed our recent live webinar on mental health and dialysis, the recording is now available on YouTube. In this valuable session, we spoke with Dr Lavan Baskaran, Principal GP in the NHS, about how dialysis affects not just the body, but also the mind - especially when it comes to travel. Living with dialysis often means juggling appointments, routines, and travel plans - and that can take a toll not just physically, but emotionally too. While medical care is always front and center, mental health is often quietly pushed aside. But here’s the truth: looking after your emotional wellbeing isn’t optional – it’s essential. Dialysis affects every part of daily life, from sleep and energy to how connected we feel with others. Stress, anxiety, and even burnout can become familiar companions – especially when preparing for or navigating travel. Whether it’s the stress of planning or the fear of the unknown, these emotions are valid and deserve attention. In this webinar, Dr Baskaran offers practical, doctor-backed tips for everyday wellbeing - from improving sleep and nutrition to managing energy levels before and during travel. Whether you're already travelling or just starting to think about it, this session is full of helpful, reassuring advice.
🎥 Watch the recording here: https://youtu.be/3Zq3EnkXB4k
Let’s make wellbeing part of every journey – both at home and while travelling. 0800 169 09 36
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KIDNEY PATIENT ASSOCIATION NEWS
A CHRISTMAS EVENING TO REMEMBER: THE ROYAL FREE HOSPITAL KIDNEY PATIENT ASSOCIATION CHRISTMAS MEAL There are some occasions in the year that remind us why community matters, why shared experiences lift the spirit, and why a warm meal and good company can mean more than the grandest of gestures. This year’s Royal Free Hospital Kidney Patient Association Christmas Meal was exactly that sort of occasion—a joyful, heart-warming celebration that brought people together and reminded us all of the strength and warmth within our community. On a brisk December evening, 35 attendees gathered at the much-loved Gokyuzu restaurant in north London, where the staff had generously arranged a private room for our festivities. From the moment guests arrived, there was a buzz of excitement in the air. For many, this annual meal has become a cherished tradition—an opportunity to reconnect with friends, meet new faces, and take a well-deserved break from the challenges that kidney patients and their families often face. This special gathering simply would not have been possible without the huge generosity of the Royal Free Hospital Kidney Patient Association, whose funding ensured that every attendee could enjoy a wonderful three-course meal without worry or expense. Their ongoing commitment to supporting patients—not only medically, but socially and emotionally—was felt throughout the evening and deeply appreciated by all present. The behind-the-scenes organisational 0800 169 09 36
magic came courtesy of Louis Toussaint, one of our dedicated trustees. Louis was the mastermind who orchestrated the event from start to finish, ensuring every detail was thoughtfully planned. From securing the venue and coordinating the entertainment to arranging the quiz, raffle, and festive touches, Louis’ hard work helped transform the evening into something truly memorable. His efforts did not go unnoticed, and we extend our sincere thanks for his leadership and vision. The team at Gokyuzu went above and beyond to create a welcoming and festive atmosphere. The aroma of freshly prepared Turkish dishes drifted invitingly through the room, and laughter and conversation soon filled the space as guests enjoyed generous portions of beautifully prepared food. The lively atmosphere only continued to grow as the evening progressed. No Christmas celebration would be complete without a little friendly competition, and the Christmas quiz provided exactly that. Teams huddled together, trying to recall everything from festive films to odd seasonal traditions, resulting in plenty of good-natured groans and triumphant cheers. It was the perfect spark to ignite conversation and camaraderie between guests. Adding to the fun was a free raffle, which proved to be one of the highlights of the night. Many prizes were shared out, creating an air of excitement as ticket numbers were
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KIDNEY PATIENT ASSOCIATION NEWS called. These prizes were made possible thanks to the kindness of Joan Dyhl and Gwen Lewis, whose donated funds allowed the raffle table to overflow with wonderful gifts. Their generosity brought countless smiles and helped make the evening feel truly magical. Of course, no festive gathering would be complete without music—and we were fortunate to have the talented Bevan Blackwood providing a musical backdrop that kept spirits high throughout. His playlist spanned genres and decades, offering something for everyone. It wasn’t long before the dance floor came alive, with guests eager to show off their moves. The room sparkled with energy, laughter, and the unmistakable joy of people letting go and enjoying themselves.
With the generosity of our donors, the dedication of our volunteers, and the enthusiasm of our attendees, the night was a shining example of what we can achieve together. A warm thank you goes to everyone who attended, participated, donated, performed, or helped organise the event, especially Louis Toussaint for his leadership and the Association for their remarkable generosity. We look forward to many more gatherings in the future and wish all our members, supporters, and friends a happy, healthy, and hopeful year ahead. By Sandra Toussaint
The spontaneous mix of people, patients, carers, staff, and fellow diners—created a sense of unity and celebration that felt wonderfully organic and uplifting. As the evening wound down, there was still one final treat in store. Each guest departed with a complimentary Panettone, a thoughtful and delicious parting gift to enjoy later—ideally, as many joked with a “nighttime cuppa.” It was the perfect final note to an evening filled with warmth, connection, and festive spirit. Reflecting on this year’s Christmas meal, one thing is abundantly clear: a great time was had by all. Events like this are at the heart of what the Kidney Patient Association strives to provide—not just practical support, but also moments of joy, community, and shared celebration.
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HELPLINE
ISSUE 138 DECEMBER 2025
RENAL PATIENTS AND ALCOHOL Living with a chronic condition like kidney disease is challenging because it never goes away. It affects daily life and often requires major adjustments. Alcohol can make these challenges harder, especially when social situations involve drinking. Why Alcohol Can Be Difficult Renal patients face unique restrictions: • Pre-dialysis: Manage diet and lifestyle to protect kidney function. • Dialysis: Control diet, fluid intake, and attend regular treatments. • Transplant: Take daily medication and stay hydrated. Alcohol is common in British social life—pub quizzes, family meals, parties. Limiting alcohol and fluids can feel awkward, and social pressure may make it harder. Tips for Managing Alcohol and Social Life Alcohol strategies: • Choose supportive social groups. • Try shandy or low-alcohol drinks. • Alternate alcoholic and non-alcoholic drinks. • Avoid ‘double’ deals. • Offer to drive—gives control and an easy excuse not to drink. Fluid restriction tips: • Sip slowly; avoid gulping beer. • Skip ice to reduce extra fluid. • Miss every other round. • Reduce fluid the day before going out. • Avoid salty snacks that increase thirst. • Lemon can help ease thirst.
NHS guidance: no more than 14 units per week. Speak to your care team if cutting down is hard. Alcohol also affects overall health— blood pressure, cholesterol, and heart health. Practical Swaps • Wine with soda (reduces alcohol and potassium). • Spirits with diet mixers instead of pints. • Reusable ice cubes to keep drinks cool without extra fluid. The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor or dietitian To request this leaflet in full please contact the helpline – helpline@kidney.org.uk or call 0800 169 0936 There are over 150 patient information leaflets in the NKF Helpline Library for a full list of titles e-mail helpline@kidney.org.uk or visit: www.kidney.org.uk/ helpline-leaflets
Medical Guidance Always follow advice from your consultant and dietitian. Some medications interact with alcohol, and certain drinks contain high potassium, which may require limits. Alcohol is calorie-dense and can lead to weight gain. Spread intake across the week and aim for 1–2 alcohol-free days. How Much is Safe? Research is mixed, but excessive drinking harms the kidneys. About 10% of alcohol is excreted unchanged by the kidneys, adding strain. 0800 169 09 36
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HELPLINE
ISSUE 138 DECEMBER 2025
THE HELPLINE PEOPLE TRUST MOST “I spoke with the NKF Helpline for advice on the behalf of my dad’s CKD Stage 4 diagnosis the Helpline were super helpful giving me guidance, next steps, experience and knowledge to help me proceed.” “As well as that offered to send me some documentation on the disease and at home management for his diet. It was a great experience. Thank you to the Helpline!”
“I appreciated the effort and the human touch from the National Kidney Federation. It’s a step forward in a space that often feels isolating. I hope this service continues to grow and listen.”
“Enormously supportive, empathetic and helpful.” “I would have no hesitation to contact the NKF Helpline again if the need arises.”
Real Talk, Real Support Contact our Freephone Helpline today: 0800 169 09 36 or email helpline@kidney.org.uk 0800 169 09 36
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PATIENT INVOLVEMENT
ISSUE 138 DECEMBER 2025
NKF KPA MEMBERS Currently there are 53 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 as the NKF to support KPAs and to be the patient voice across the UK. Find your local KPA today: www.kidney.org.uk/kidney-patient-associations
PATIENT PARTICIPATION OPPORTUNITIES Discover opportunities to share your experience and support kidney research. The NKF have 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. Explore the opportunities available now: https://bit.ly/patientparticipationopportunities
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FUNDRAISING
ISSUE 138 DECEMBER 2025
NKF CHRISTMAS RAFFLE WINNERS The 2025 Christmas Raffle took place on Wednesday 10th December 2025. A big congratulations to all! Our winners were: 1st Prize - T Jackson, Huntingdon Ticket no 156156 2nd Prize - R Barnett, Swansea, Ticket no 006051 3rd Prize - S James, Eastleigh, Ticket no 005738 4th Prize - R King, London, Ticket no 035600 Also a BIG THANK YOU goes out to all that took part in our Spring and Christmas raffles this year. Without your support, we wouldn’t be able to do all the amazing things we do to help patients and families affected by kidney disease.
Pulled out by our volunteer, Pauline Fincher.
SHOP ONLINE AND SUPPORT THE NKF Whatever is on their wishlist this year, you can raise vital funds for the National Kidney Federation. From the must have festive breakfast to the perfect present, raise a donation with every order: Click here to get started: www.giveasyoulive.com/charity/nkf
THE NKF CHRISTMAS STAR IS BACK
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FUNDRAISING
ISSUE 138 DECEMBER 2025
PURCHASE A DIGITAL E-CARD THIS CHRISTMAS Planning to send Christmas cards this year? Make the switch to a digital e-card! Through our partnership with dontsendmeacard.com, you can send a beautifully designed e-card and support the National Kidney Federation at the same time. Just head to the NKF shop, pick the e-card you like, and send it instantly to friends and family. Rather than paying for cards and postage, you can choose to donate that amount to us. Why not try it today? www.kidney.org.uk/e-card
STOCK UP ON LAST MINUTE CHRISTMAS ITEMS - YOUR LAST CHANCE TO ORDER! NKF Members save 10% off NKF shop items!
Feeling festive? Grab those last minute stocking essentials, Christmas cards, money wallets, and our 2025 calendar included. The last day to order is Wednesday 17th December 2025, 12pm. Explore our Christmas collection online today: www.kidney.org.uk/pages/shop/department/christmas 0800 169 09 36
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ISSUE 135 SEPTEMBER 2025
BECOME A MEMBER https://bit.ly/nkfmembership
JOIN NOW!
Join the NKF Community and Make a Difference. From just £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 select items in the NKF online shop plus exclusive memberonly discount days. Invites to special NKF events and discounted entry to our annual event National Kidney Federation. Early notice of upcoming sales, campaigns, events — and more National Kidney Federation. 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 (many 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