IMPACT REPORT 2024
READ SHAEMUS’ STORY ON PAGES 10 TO 13.
Welcome to the National Kidney Federation’s Annual Impact Report
The past year has been a remarkable one for the National Kidney Federation (NKF), filled with many noteworthy achievements, as highlighted throughout this report.
In 2024 we proudly celebrated a huge milestone with our 25th anniversary of the NKF Helpline. This milestone marks a quarter century of dedicated support to kidney patients and their families. Our Helpline continues to thrive, offering support and guidance to patients and their loved ones affected by kidney disease. Thanks to our dedicated advisors, Stephen and Linda, who bring their personal experiences as a kidney patient and carer, this service remains a valuable resource for patients, carers and healthcare professionals.
And what better way to celebrate our 25th anniversary than holding our Annual Patients’ Event face to face in October 2024? We successfully hosted the Annual Patients’ Event and also hosted our Kidney Patient Association (KPA) Day earlier in the year, as well as sponsored the KDARs for Kids Brave Bean Awards. All of our networking events were met with enthusiasm and positive feedback, providing a wonderful opportunity to reconnect old friends and make new ones. Engaging with our kidney community is always so special.
We have extended our reach to offer even more comprehensive peer support with our NKF Peer Support Service expansion to all aspects of kidney disease. Originally the free National Peer Support Service was for home dialysis queries, however we have recently branched out for this to be a support service for all affected by kidney disease to speak to an experienced peer. Find out more on page 8.
We are now proud partners of DAYLife, continuing our mission with home therapies, which you can read all about on page 17.
Once again, we have our little shining star, Shaemus, joining us for an update from mum Sarah about Shaemus’ transplant journey and how he has been doing since his transplant procedure. Please find his story on page 10.
I am deeply grateful to our small yet highly operative staff team, whose dedication ensures we provide exceptional care and support to thousands of patients each year. Behind the scenes, we tirelessly advocate for kidney patients across the UK, challenging the NHS and Government to secure the best possible care. The NKF Executive Committee also plays a crucial role in driving our charity forward, demonstrating commitment to bringing our strategic goals to fruition.
We extend our thanks to our industry partners, trust funders, and individual supporters. Your support is vital, and we wouldn’t be able to do the work we do without you.
Please Help Support Our Mission
If you are able to make a donation, regardless of the amount, we assure you it will be used effectively for the benefit of kidney patients.
Donations can be made through this link: www.kidney.org.uk/donate/ donate/5/credit-card
Or if you would like to become an NKF Member visit: www.kidney.org.uk/member
Best wishes
Andrea Brown NKF Chief Executive
An Overview of Kidney Health in the UK
We support the estimated 3.25 million kidney patients in the UK (stages 3 to 5).
• There are over 30,000 people on dialysis in the UK.
[UKKA 2023]
• There are 40,000 living with a kidney transplant in the UK.
[UKKA 2023]
• 22 people start kidney replacement therapy (usually dialysis) every day in the UK.
[UKKA 2023]
2024 Transplant Statistics
• Total number of individuals awaiting an organ transplant: 7,977
[NHSBT – Dec 2024]
• Individuals awaiting a kidney transplant: 6,373, accounting for 79.8% of the total waiting list.
[NHSBT – Dec 2024]
• Individuals who died while waiting for a kidney transplant: 281, 64% of the total deaths on the transplant waiting list.
[NHSBT – 2024]
The above figures show the critical need for continued advocacy and support
* The above statistics have been provided by the UK Kidney Association (UKKA) and NHS Blood and Transplant (NHSBT).
Making an Impact in 2024
In 2024, we continued our mission to make a significant impact on the lives of those affected by kidney disease. Our efforts were focused on expanding support services, increasing awareness, influencing policy changes and enhancing our fundraising activities.
Support Services
We expanded our Helpline and Peer Support Services, reaching more patients and families than ever before. Here’s a look at some of our major accomplishments in 2024:
25th Anniversary of the NKF Helpline: Celebrated a milestone year of providing invaluable support to individuals and families.
KDARS for Kids Brave Bean Awards: Sponsored the KDARS event to celebrate and recognise the courage and resilience of young kidney patients and their families.
KPA Day: Hosted our annual networking event for Kidney Patient Associations.
NKF Annual Patients’ Event: Brought together patients and families for support and education.
DAYLife: Became proud partners of DAYLife, a knowledge hub for home dialysis quality improvement projects.
NKF Peer Support Service Expansion: Helped to reach more communities with our network of peer supporters.
We also provided an unprecedented number of webinars on particular topics, including:
• How Medicine Delivery Services Can Help Benefit and Support Kidney Patients
• Foot Care with Kidney Disease
• Sexual Relationships in Kidney Failure
• Fatigue and Kidney Disease
Increased Awareness
Through our campaigns and events, we’ve reached millions of people, raising awareness about kidney health and organ donation. Highlights of our awareness initiatives included:
World Kidney Day: Raised awareness on World Kidney Day in collaboration with the Kidney Charities Together Group.
Home Dialysis Report: Produced a report and shared collated outcomes from the Home Dialysis Campaign in 2023 to encourage the renal community and beyond to continue taking action.
UK Kidney Week and ANN UK: Attended both events and represented the NKF with an information table, along with joining in on informative sessions and activities.
British Transplant Games: Celebrated the spirit of organ donation through sport.
Launched the new and improved NKF website: Enhanced our digital presence to provide better resources for patients and families.
Organ Donation Week: Promoted the importance of organ donation to save lives.
Policy Influence
We continued our policy efforts to enhance future improvements for patient care. We focused on:
• Campaigning for fair access to medications for kidney transplant patients
• Campaigning and lobbying the Government to improve kidney care in hospitals and renal units
• Raising awareness for CKD in chemists across the UK
Fundraising activities
Our fundraising efforts received tremendous support from dedicated individuals and communities. Participants eagerly joined our annual challenges, such as the popular Best Foot Forward Challenge and the Choctober Challenge, as well as organising their own fundraising events to support our cause. This generosity has been pivotal in driving our mission forward. 2024 has been a year of remarkable achievements and growth. Together, we continue to make a difference in the lives of those affected by kidney disease, striving for a future where every patient receives the care and support they deserve.
NKF Helpline: The Go-To Source for Support and Information
25th Anniversary
Since 1999, the NKF Helpline has been the UK’s leading provider of kidney related information leaflets. With over 200 titles written by nephrologists, these resources are made for patients and carers in mind. The Helpline operates from Monday to Thursday, 8:30 am – 5:00 pm, and on Friday from 8:30 am – 12:30 pm. The NKF Helpline has been a lifeline of hope and support, providing FREE, compassionate advice and information. Celebrations of the NKF Helpline 25th Anniversary took place at the Annual Patients’ Event.
Our Helpline’s dedicated advisers, Linda and Stephen, bring a wealth of personal experience and expertise. Stephen, who has undergone two kidney transplants and experienced dialysis, offers not only comprehensive knowledge but also a deep empathy for those seeking advice. Linda, having cared for her late husband who had kidney disease, provides a unique perspective. Her background as an advocacy officer for kidney patients adds to the support she offers.
Activity in 2024
The NKF Helpline experienced another exceptionally busy year, with over 5,000 patients, families, carers and healthcare professionals contacting the Helpline through calls, email queries, the live web chat facility on the NKF website, plus posted letters.
Additionally, the Helpline team distributed a substantial number of resources, including leaflets and information packs.
Integrated Care Boards (ICBs)
Throughout the year the NKF Helpline reached out to all ICBs and received responses from 21 with important information on Chronic Kidney Disease (CKD) stage 3. From these ICBs, they have established connections with 85 GP surgeries that requested resources for their display units.
Resources Distribution
The NKF Helpline dispatched a total of 65,000 leaflets to various units and patients. Furthermore, over 1,000 patient support packs and more than 2,000 patient information folders were sent out. These folders contain essential leaflets covering topics such as dialysis, transplants, diet and exercise, as well as information specifically related to CKD stage 3. The information packs created by the Helpline’s team have proven to be particularly popular among recipients.
The NKF Helpline has achieved significant recognition for its high standards and commitment to quality. We are proud to announce that the Helpline is now a member of the Helpline Partnership, following rigorous checks and compliance processes over several months. In addition, our Helpline leaflets have been awarded the prestigious PIF TICK, the UK’s only assessed quality mark for health and care information, both in print and online.
These accolades reflect the professional, reliable, and compassionate service that the NKF provides.
The Helpline continues to expand and remains a highly sought-after service among patients and renal hospitals. The most frequent calls received by the Helpline in 2024 involved topics such as:
In 2024, the Helpline was delighted to introduce 21 new titles to our information library, these new titles are listed below.
1 Employer’s guide to chronic kidney disease 2 Living with fatigue - fatigue management for people with kidney disease 3 Confronting depression while managing kidney disease
The renogram test
NKF Peer Support Service Expansion
This year the NKF Helpline expanded its National Peer Support Service.
The Peer Support Service was initially born to provide support for home dialysis queries and as part of the NKF’s Home Dialysis Campaign, facilitating one on one conversations with trained peers who have first hand experience with home dialysis, offering their insights and empathy to those in similar situations.
The service has now expanded and is for all aspects of kidney care and management.
The Peer Support Service provides a safe and supportive environment where individuals with kidney disease, family members, partners and caregivers, can connect with trained peer supporters to share experiences and receive guidance with like-minded peers.
The free-to-call service enables individuals to engage with peer supporters either by phone, online web chats or face to face meetings.
Fellow NKF Peer Supporter Kasonde promoting peer support in her local unit
“Being thrown into this new world with kidney disease, the peer support service has been there for me and my family as a helping hand.”
The NKF Helpline have sent out numerous peer support pull-up banners to various hospitals who are displaying them in their renal wards and waiting rooms and have also sent out hundreds of laminate posters and flyers to promote the service for home therapies and also for the new expansion of our service.
In 2024 the NKF Peer Support Service helped 55 people who were considering home therapies and 2 patients who needed support through the newly expanded Peer Support Service.
For more information about the NKF Peer Support Service please call the NKF’s Freephone Helpline on 0800 169 09 36 or email helpline@kidney.org.uk www.kidney.org.uk/peer-support
Available Monday to Thursday from 8:30am to 5:00pm and Friday from 8:30am to 12:30pm.
Shaemus’ Update
For the past few years, Sarah Lincoln has been sharing annual updates within the NKF Impact Report on her son Shaemus’ kidney journey. In 2024, Shaemus received a life-changing kidney transplant from his father, Kieran. Sarah shares more about Shaemus’ incredible milestone and reflects on the year Shaemus has had.
The day finally arrived, for almost 6 years we waited for Shaemus to have a kidney transplant, he had approximately 1,825 days of dialysis and on the 10th of January 2024, he had his last session at Alderhey Children’s Hospital.
When Shaemus’ 5 hour session ended, we said our teary goodbyes to all the doctors and nurses and headed the next day to Manchester Children’s Hospital ready for his transplant. Myself and Shaemus went to the paediatric ward and his daddy went to the adult’s ward, luckily, we were not too far away so we could still see each other.
Although Shaemus had 5 hours of dialysis the day before his admission at Manchester, his potassium was high and the renal team were a little worried about this before the morning of surgery, so he headed straight to dialysis for an hour to try and lower his potassium. The surgeons were keen to get him in for a transplant after that, so off we went to theatre.
After signing all the consent forms, and me realising the transplant was going ahead I burst into tears with so many emotions running through my head. With Kieran and Shaemus both in surgery, I waited for 9 hours watching the clock not knowing what was happening and of course panic was setting in thinking something had gone wrong, worrying about whether they could fit the kidney in with his already enlarged liver and how his chest was coping with the lengthy anaesthetic.
Kieran came back first from the procedure so I was able to sit with him for an hour before getting a call that Shaemus was in recovery. I was told to prepare for seeing lots of wires, drips, and machines, but of course, I was just eager to give my baby a massive squeeze and see how things went.
When I walked in to see Shaemus, he was doing so well sitting, taking sips of water, and only needing a small amount of oxygen. In true Shaemus style with his multiple complications, we thought he was going to need to go back to the theatre with a possible internal bleed because they were struggling to stabilise all his
numbers. They gave him a blood transfusion and some Furosemide to help with his urine output and thank the lord, his numbers were gradually becoming better, so we went to the intensive care unit (ICU) to start the recovery process.
His new kidney was a little ‘sleepy’ but it was getting better as the days went by he was on fewer wires so he could become mobile again. Shaemus was in the hospital for a total of 2 weeks then was discharged home to start living his best life, to drink a minimum of 1000ml water a day, a non-restricted diet, and completely new medicines to what we were used to. Some days he does really well with his water, but other days we need to keep telling him to drink! Yes, you read that right. After years of a restricted fluid of 200ml, we have to keep telling him to keep drinking. But to this day his kidney function is brilliant with a creatinine of 18 to 21 every time we go to the clinic.
We will be forever grateful to the renal team and surgeons at Manchester Children’s Hospital. Kieran said, “he only did what any other parent would do”. It took Kieran quite a while to recover fully so he could return back to work. In my eyes, Shaemus and Kieran are the bravest people I know and there aren’t enough words in the world to say thank you for prolonging our boy’s life.
We loved all of the family time we were getting, not being tied to the hospital or worrying about dialysis. We enjoyed going for meals, trying out new foods, and ordering pints of water with ice cubes to go on walks to the park and bowling. But suddenly all of our little trips away came to a sudden stop.
In February he started suffering from headaches and they were becoming more frequent and severe. He was admitted back to the hospital for scans and blood tests to find out why. After he had an MRI of his head, they discovered a massive amount of fluid in his brain which was the cause of the headaches. He was put under the Neurologist Team and they decided it would be best to do an ICP procedure to monitor the intracranial pressure over a 48 hour period to decide what the best overall outcome would be for Shaemus and the safety of his future. We never in a million years thought this was going to be part of his Jeunes journey and we were totally devasted thinking the worst once again.
The results showed his cranial pressures were high over a long time and the decision was then made to go ahead and do an Endoscopic Third Ventriculostomy (ETV) on the 7th March to release all the pressure and drain the access fluid. During this surgery he also had his central line removed as his kidney transplant was a complete success and wasn’t needed anymore!
Weeks after discharge, he had a follow up MRI to check for any more build-up of fluid, and everything seemed to be working great. His hair was growing faster and thicker, his nails healthier, and he had colour in his face and was growing a little bit more every day.
We were briefly back home to then be admitted again on the 17th March, he was struggling to breathe needing oxygen. He was exhausted because his breathing was being restricted at night time.
Blood tests now showed he was positive for Epstein-Barr Virus (EBV) and the levels were sky high causing his tonsils to be inflamed and thick with mucus, restricting his airway.
Knowing that EBV is a commonly passed on virus to a transplanted patient we had to hope and pray he could get over this by himself. He got worse before it was better but he did amazingly. After a few weeks, he was well enough to carry on recovering at home. We were going back to the clinic more regularly to check his EBV levels. Whilst home it was not stopping us from enjoying our free time, we were having more days out. We went to the circus, beach, zoo, Gulliver’s World, and had pool parties at home and barbecues whilst celebrating birthdays.
We even made plans for Shaemus to start back at school in June as he had missed so much over the years. He was really enjoying himself making new friends and becoming more confident when going to school in the mornings.
Shaemus’ Update
He managed 3 weeks at school and then ended up slipping on some gravel fracturing his right tibia. He lost his mobility and had a full length cast on for 2 weeks then a boot for 6 weeks after that. At this point I’m just thinking what the hell have we done to deserve this in life, it is never ending for this poor boy. He carried on as always. We had a little caravan holiday booked and he was adamant he was still going; a broken leg wasn’t going to stop Shaemus having fun. Caravan holidays are his favourite places to be.
Shortly after our holiday, we were back home and I noticed he was snoring a lot more and his oxygen requirement was slowly increasing again. I automatically assumed he had picked something up as he is immune suppressed after his transplant. I asked for a local sleep study at home to check what was going on and the tosca showed his oxygen saturations were dropping too much and he was retaining too much CO2 at night time.
While the consultants were deciding on the best route to go down, he started to deteriorate and was blue lighted locally, a sputum sample tested positive for Streptococcus pneumoniae. Now he was on 7 litres of oxygen, my head was in a whirlwind.
When it was safe to do so we were transferred to Alderhey Hospital for antibiotics and was provided with a plan to move forward. Shaemus was to recover and be back at a safe baseline of oxygen to go to theatre to have a Tonsillectomy, hoping this will help his heavy snoring, sleep apnoea and CO2 levels.
Myself, Josephine (Shaemus’ sister), and Shaemus stayed on the ward until he was ready for surgery. Continuing to share Shaemus’ story we did a little interview with the Women’s Pick Me Up Magazine and drew a picture for the hospital to be projected onto the wall for everyone to see to promote for Organ Donation Week.
On 5th September Shaemus went to theatre to have a total tonsillectomy and adenoids removed. Everything seemed good and well and he went to a high dependency unit as a precaution. However, heading more into the night, his throat started to bleed and he was getting more and more distressed. Sat by his side trying to comfort him, his saturations started dropping to 45 and blood started pouring out of his mouth and he was choking on it. By 6am the next morning he was being rushed down the corridor back to theatre to stop the
bleed. I was running behind trying to catch up, he needed a blood transfusion and was in surgery again for another 6 hours. I was going out of my mind with worry. I was then escorted to ICU to find him laid lifeless on a ventilator! I was in a living nightmare and my heart shattered into a million pieces.
With Shaemus’ Thoracic Dystrophy I always remember being told if he ever needed to go on a ventilator, he would struggle to come back from this. Feeling helpless all I could do was make sure he was getting enough chest physio, nebulisers, and suction to his lungs, he was already on a massive amount of antibiotics because he had aspirated too much blood. He rested for 48 hours to help his throat heal. Two days later, no sooner, had they reduced the sedation he was coming back around and fighting back. There was our boy!
Speaking to the renal consultant about my opinion on the immune suppressant Mycophenolate Mofetil (MMF) and all his reoccurring chest infections, we both agreed to stop it and use Prednisolone instead alongside Tacrolimus.
His liver enzymes were extremely elevated and he was struggling to get rid of his bile acids due to his Caroli Disease and has started Cholestyramine to help the waste products and reduce his itchy skin. This is closely being monitored by Hepatology over at Leeds.
After he had a few days on the ward we were discharged for the final time in 2024. He went home on a traffic light system for his oxygen requirement and we haven’t needed to go back and are managing his care at home. We spent Christmas 2024 at home together as a family for the first time in 7 years.
Shaemus loves doing things he’s missed like playing in the snow, visiting family, and even having a bath without worrying about getting any lines wet.
He is still retaining CO2 at night time which we think is mechanical with the way he is breathing and his small chest shape. More tests and investigating will be done in 2025 and he is still positive for Streptococcus pneumoniae but still is well and at home for now. The Jeunes syndrome journey is not for the weak! There are always obstacles to overcome, I do know Shaemus is an incredibly strong and determined little boy who will fight back stronger every time and I’m still learning on the job every day.
I will continue to educate people about Shaemus’ story and fight for his every breath. I’d like to add that he loves going to see the horses, loves to find a miniature train to ride everywhere we go and he really wants to ride in an actual green Lamborghini which is on his Christmas list for 2025 - it was the first time he didn’t ask for a new kidney.
For 2025, we have so many things to look forward to, our fingers are crossed there won’t be any unexpected twists!
I’d like to say a big thank you to the National Kidney Federation for your continued help and support for Shaemus and for the help your team has provided our family to share his story.
We get frequently told by patients on the adult haemodialysis units that they love seeing Shaemus and reading his story within the NKF Impact Reports, especially where my mum used to dialyse because they know Shaemus is her grandson.
Shaemus’ struggle with kidney disease continues... his story was last updated in January 2025.
Advocacy and Support for Kidney Patients During COVID-19
Our proactive engagement with policymakers, including a letter to No. 10 Downing Street, ensured that the needs of kidney patients were prioritised during the ongoing COVID-19 response.
To mark the fourth anniversary of the implementation of the first legal COVID-19 lockdown restrictions in the United Kingdom, the NKF amongst a coalition of charities and patient groups representing immunocompromised individuals, delivered a letter to No. 10 Downing Street to former Prime Minister Rishi Sunak on 26th March 2024. In this letter, we expressed our concerns about the continued high risk that immunocompromised people face from COVID-19 and the lack of speedy access to protective drugs for them.
The NKF remains committed to providing the latest guidance and information on COVID and the support that is available to immunocompromised individuals. For more details, visit: www.kidney.org.uk/News/ coronavirus-latest-informationand-advice
Advocating for Policy Changes to Ensure That No Individual Has to Compromise Their Health Due to the Cost of Prescriptions
An NKF survey shed light on the financial challenges faced by kidney transplant patients in accessing their immunosuppressant medication.
Survey Insights
The survey, conducted by the NKF, aimed to gather transplant recipients’ experiences to campaign for improved medication access. It revealed significant disparities in prescription costs across the UK. While residents of Wales, Scotland, and Northern Ireland benefit from free prescriptions, those in England who are not exempt face a charge of £9.90 per item.
Over 300 kidney transplant recipients participated in the survey and results showed that 16% of respondents reported having a Prescription Pre-payment Certificate (PPC), which can help manage and stagger their costs. A PPC has an annual cost of £114.50 for an unlimited number of prescriptions, offering payment options for those needing more than three items in three months or eleven items in twelve months.
Concerning Findings
Alarmingly, more than 5% of respondents to the NKF survey admitted to reducing their dose of immunosuppressive medication to extend their medication supply. This poses a significant risk to their health and transplant viability.
The average wait for a kidney transplant is 2-3 years, and there are currently over 6,000 kidney patients on the waiting list.
The Bigger Picture
Dialysis costs the NHS up to £24,000 per patient each year, and dialysis units are under significant capacity pressure. Patients whose transplant has failed because they could not afford to take their medication as prescribed is alarming and the decision to not address the out of date prescription exemption list is short sighted. People should not be feeling that they have no choice but to risk their graft function and survival by rationing their medications.
Advocacy for Change
As a member of the Prescription Charges Coalition, we are determined to continue to address this pressing issue. Together with 50 other organisations, who are members of the Coalition, we are advocating for policy changes to ensure that no individual has to compromise their health due to the cost of prescriptions.
World Kidney Day 2024
On World Kidney Day, along with the Kidney Charities Together Group that consists of the National Kidney Federation, Kidney Research UK, UK Kidney Association, Kidney Care UK, PKD Charity, Kidney Wales and Popham Kidney Support, we raised awareness that up to 7.2 million people in the UK are currently living with kidney disease yet there isn’t enough awareness about the condition.
Many KPA’s also joined in on the day and organised their own events with stands in their local units.
Linda Pickering, NKF Helpline Advisor also attended a renal patient education fair at Hull Hospital and fundraisers also chipped in on the day to support the NKF with their very own fundraising events. The day was very busy and our social media was filled with people celebrating and spreading awareness.
The Kidney Charities Together Group also spread awareness of the World Kidney Day campaign by launching the #MyKidneyHero competition on Facebook, Instagram and X. The aim of the competition was to encourage people to nominate someone who has supported them through their kidney disease journey, whether it was during diagnosis, providing transportation to dialysis, or making their everyday life easier.
We then collected and shared these inspiring stories on social media to raise awareness about the disease. To enter the competition, participants had to nominate their kidney hero and explain why they deserved recognition. They also needed to tag us and use the campaign #MyKidneyHero.
NKF Ambassador Hattie Stiff also raised awareness with an interview by the BBC Points West and BBC Radio Somerset about her life with kidney disease and her transplant journey.
World Kidney Day is a great annual event that increases awareness and the understanding of kidney disease and its impact.
www.worldkidneyday.co.uk/
Below are examples of statistics we shared as part of our collaborative campaign on social media for World Kidney Day...
NKF Ambassador Hattie Stiff raising awareness
Increasing Home Dialysis in the UK –Fourth Report
The NKF released an annual report aimed at boosting the number of kidney patients who opt for home dialysis treatments. The report highlights that patients who choose home dialysis experience greater benefits and enjoy a better quality of life, compared to those who undergo dialysis in a hospital setting.
Key Findings
The fourth edition of the report indicates a reduction in the national percentage of kidney patients undergoing dialysis treatment at home.
Despite the known advantages, there are systemic challenges in expanding home dialysis options.
We are urging Hospital Trusts to develop robust plans to improve home dialysis uptake by patients.
Research has consistently shown that individuals on home haemodialysis benefit from improved quality of life. Possibly due to the more comfortable and flexible treatment schedule that home therapies can offer. Home dialysis also allows for longer and more frequent sessions that can lead to better outcomes, including survival, and quicker recovery.
National Efforts and Responses
As part of our campaign to increase home dialysis, all 89 clinical directors across the country were asked to describe their plans for the future of home dialysis and to share any examples of good practices that are in place. A total of 29 responses were received; 23 from England, four from Scotland, and two from Wales.
Despite the challenges, these responses included within the report show there is significant enthusiasm from hospitals to advance home therapies nationwide.
NKF Chief Executive, Andrea Brown commented; “Our Home Dialysis Campaign and annual findings will continue to be shared with Hospital Trusts until significant improvements are achieved. Not all kidney patients are familiar with why they should consider dialysing at home and how it can help them have a better quality of life. The National Health Service is facing immense pressures, offering the opportunity for patients to undergo treatment at home is advantageous both for the patients and the NHS.”
To read the latest report, Increasing Home Dialysis in the UK – Three Years On, visit: www.kidney.org.uk/home-dialysiscampaign#Increasing_Home_ Dialysis_in_the_the_UK
The Home Dialysis Report and Campaign will continue in 2025.
Joining Forces with the DAYLife Programme to Continue Increasing Home Dialysis
The NKF has campaigned for the last three years to increase home therapies with annual Home Dialysis reports and a manifesto in 2013 to highlight systemic challenges in expanding home dialysis options.
Now the NKF has partnered with the DAYLife programme to continue to be an essential part in supporting patients in choosing home therapies.
The DAYLife programme is designed to support renal centres in meeting the 20% target set by the “Getting It Right First Time” (GIRFT) initiative.
Written by Dr Graham Lipkin and Dr William McKane, the GIRFT National Report recommends expanding home dialysis to ensure that all suitable patients have access and choice, aiming for a minimum of 20% of dialysis patients to be on home therapies in every renal centre across the country.
The DAYLife programme aims to foster a national movement, identifying key areas for improvement and to address challenges that impact multiple patient pathways.
The aims of the DAYLife programme are to encourage:
• All kidney centres in the UK to engage and actively participate in quality improvement work around home dialysis therapy by December 2025.
• All centres to achieve a minimum of 20-25% of their prevalent dialysis patients to be on a home therapy by December 2027.
• Centres that are currently achieving the target of 20% to continue to demonstrate incremental improvement in the proportion of patients on home dialysis year on year.
Andrea Brown, NKF Chief Executive, commented: “We are pleased to join the DAYLife programme. For the past three years, the NKF has been campaigning to increase home therapies, backed by annual report findings from the UK Renal Registry. The NKF’s Peer Support Service, launched in 2021 and will continue to be an essential part of our efforts to support patients in choosing home therapies.”
Learn more about the NKF’s Peer Support Service by visiting: www.kidney.org.uk/peer-support
You can also reach out by calling the NKF Freephone Helpline on 0800 169 09 36, or email helpline@kidney.org.uk
For details on the DAYLife programme, please visit: https://ukkidney.org/kquip/ projects/daylife
To sign up to the DAYLife mailing list, and receive updates on the DAYLife programme visit: https://forms.office.com/r/ iKrpTUCZpg
To get involved with the programme please contact: kqip@ukkidney.org
Supporting KPAs
Kidney Patient Associations (KPAs) are integral members of the National Kidney Federation Council, working to provide essential support to kidney patients at a local level. As independent charities, many KPAs are based within hospital renal units, ensuring they are accessible to those in need.
The primary role of a KPA is to offer guidance, assistance, and community support to individuals at all stages of kidney disease, including those who are pre-dialysis, undergoing dialysis, or have received a transplant. In addition to aiding patients, KPAs also extend their support to families and loved ones, helping them navigate the challenges associated with kidney disease. Through fundraising, social events, and peer support, KPAs play a crucial role in improving the wellbeing and quality of life for kidney patients and their communities.
In 2024 a new NKF Membership Development Lead was appointed, Chris Talbot, a kidney patient himself who has a very important task in supporting the 50 Kidney Patient Associations (KPAs) across the UK, assisting in the formation of new KPA groups in areas without representation, supporting the existing groups and expanding individual membership within the NKF.
Through engagement with KPAs, several common challenges have become apparent. Many KPA groups are still experiencing the lasting impact of the Covid-19 pandemic, which severely disrupted their
activities. Rebuilding momentum has remained a challenge, but with restrictions in dialysis units now largely lifted, there is renewed optimism for reinvigorating KPA community engagement. Other difficulties include attracting younger members and increasing participation in committees – both of which are being actively addressed through targeted support and strategic initiatives.
Looking ahead to 2025, the priority will be to ensure that KPAs are thriving, to strengthen regional networks, and to enhance their ability to drive positive change within the NHS. Encouraging younger kidney patients to become involved with their local KPAs will also be a key focus, empowering them to take an active role in shaping their own kidney journeys.
Additionally, there will be a strong emphasis on reinforcing the “Federation” aspect of the NKF, demonstrating the impact of collaboration and collective action in improving outcomes for kidney patients across the UK.
Since starting in July, Chris has met with 38 of the 50 KPAs across the UK and has started working on the set up of 4 new KPAs.
Setting up new KPAs
With the help and support of the NKF, Bradford KPA have become a registered charity and a new member of the NKF in 2024.
New
Members
We were also delighted to have the Dumfries and Galloway KPA become members of the NKF. We have also welcomed new associate members Danielle’s Flutterbyes and the UK Renal Social Work Group.
Regional Networks
We continue to work on having strong regional networks and encourage KPA engagement within their region.
Events
We have attended regional Kidney Information Network events across the UK, that have allowed us to promote the work of the NKF and the KPAs in the following regions:
• North West
• Yorkshire and Humber
• North East and North Cumbria
NKF Zoom account
The NKF Zoom account is available for KPAs to use for committee meetings, AGMs and online events. Please let us know if you wish to take up this offer in 2025.
Expansion works in the North West
Currently helping with the set ups of the Wirral and West Cheshire KPA and the Lancashire and South Cumbria KPA. Initial work has also begun on a new KPA for Salford after the closure of Hope KPA.
Attending committee and AGM meetings
Chris has attended various KPA AGMs and Committee Meetings in 2024.
If you would like for us to be present at any of your KPA meetings in 2025, please email chris@kidney.org.uk.
KPA Members and Associate Members
The NKF currently have 50 Kidney Patient Association members across the whole of the UK and 5 Associate Members, they are as follows: KPA Members*:
1. Addenbrooke’s KPA
2. Barts KPA
3. Bradford KPA
4. Bristol Area KPA
5. Chesterfield KPA
6. Colchester KPA
7. Coventry & Warwickshire KPA
8. Doncaster and Bassetlaw Kidney Association
9. Dorset KPA
10. Dudley KPA
11. Dumfries and Galloway
12. Exeter and District KPA
13. Friends of Derriford Hospital Kidney Unit
14. Gloucestershire KPA
15. Guys and St Thomas
16. Heart of England
17. Humberside KPA
18. Ipswich & District Kidney Association
19. Isle of Wight KPA
20. Kent KPA
21. Kernow KPA
22. King’s KPA
23. Leicestershire KPA
24. Lister Area KPA
25. Liverpool KPA
26. Manchester Royal Infirmary KPA
27. Manx KPA
28. North East KPA
29. North Staffs & South Cheshire KPA
30. Northamptonshire KPA
31. Nottingham & Notts KPA
32. Orkney KPA
33. Queen Elizabeth Hospital KPA
34. Royal Derby KPA
35. Royal Free Hospital KPA
36. Royal London Hospital KPA
37. SAKA (Sheffield Area Kidney Association)
38. Scottish Kidney Federation
39. SEKPA (South Eastern KPA)
40. Shropshire KPA
41. Six Counties KPA
42. South East Scotland KPA
43. Southport Kidney Fund
44. St Helier & Surrey KPA
45. Tyneside KPA
46. United Norwich KPA
47. Wessex KPA
48. West London KPA
49. West Riding KPA
50. Ysbyty Gwynedd KPA
KPA members at time of printing
Associate Members:
1. B.A.S.W
2. Danielle’s Flutterbyes
3. K.D.A.R.S for Kids
4. Kidney Cancer UK
5. UK Renal Social Work Group
Our KPAs are doing some fantastic work in their local areas, working hard to support their patients, staff and units. Each KPA is unique in what they offer, some offer services such as:
• Newsletters
• Small grants
• Social events
• Trips and outings
• Holiday homes
• Peer support
• Gifts at Christmas
• Funding for research
• Funding for hospital equipment
Although all KPAs are unique, one thing they all have in common is, they are run by volunteers who have been affected by kidney disease. Whether they are transplanted, on dialysis, in early stage CKD, carers, families, friends or clinical staff, they give up their time to help others. If you would like to get involved with your local KPA, or would like to start one in your renal unit, contact Chris Talbot at chris@kidney.org.uk or call 07908 845713.
Kidney Patient Association Day
In April 2024 around 40 KPA chairs and members held their annual meeting at the Arden Hotel in Birmingham. The day was a great opportunity for networking, sharing and learning.
After a warm welcome from NKF Chairman, David Coyle, and reflecting in a minute’s silence for family, friends and colleagues lost over the past year we were straight into the group sessions. No time was wasted as we moved around in groups of 10 to each corner of the room where we considered:
• How to grow KPA membership
• Raising KPA profiles with your hospital and patients and how to support patients
• Organising social and fundraising events
• KPA’s understanding of the NKF, lots of interesting discussions were generated in each group.
All group discussions were facilitated and recorded by the NKF team. Collated comments were then fed back to the whole group and further questions were raised and information shared. After lunch the Annual General Meeting was held followed by the council meeting.
The new NKF Officers and Executive Committee members were announced for 2024 as follows:
NKF Officers:
David Coyle – Chair
Tarsem Paul – Co Vice Chair
Caryl Bryant – Co Vice Chair
Mike Sinfield – Treasurer
Brian Child – Secretary
The following people have been elected as new Executive Committee members:
Ros Aird – Lister Area KPA
Sarita Khurana – West London KPA
Charleen Sepede – Friends of Derriford KPA
Soumeya Bouacida
Feedback from people attending the day was very positive with comments about the usefulness of sharing ideas and experiences, networking, the informality of the day and inspirational ideas for their own KPA.
Raising Awareness of Our Services and Engaging with Our Community
We have continued to raise awareness about the issues people face with kidney disease, and what our services do to help support individuals and their families so they don’t feel alone, we have also continued our hard work to campaign for improving renal care and treatment.
By engaging with our community, we help them understand how they can access our services and support the work we do. We’ve attended many events to represent the NKF and what we do including:
For over 46 years, the National Kidney Federation (NKF) has served as a dedicated advocate for renal patients. What sets us apart is our unique status as the only National charity that is entirely run by kidney patients, for the benefit of kidney patients. Despite our impactful presence, it’s noteworthy that our operations are sustained by a modest team, with just 10 full-time staff members.
Celebrating Organ Donation Week
In September 2024, we shared numerous incredible and inspiring kidney transplant stories to emphasise the importance of organ donation and transplantation.
Sophie, Ali, Nick and Ruth, shared their personal experiences with the NKF, plus Claudia who shared her journey of redefining life as a 27 year old living with chronic kidney disease and her quest for representation for younger individuals with CKD.
These powerful stories were shared across our social media platforms, touching countless individuals. Our community responded with an outpouring of encouragement and kindness, sharing their own experiences and spreading the message to friends and family.
Thank you to everyone who engaged with these inspiring stories during Organ Donation Week. Across the country, dedicated KPAs also celebrated Organ Donation Week with informational stands within their local units to engage with the public, offering organ donation information and resources. It was great to see the enthusiasm and commitment of so many KPAs and their supporters as they came together for this important cause.
To read the full stories of Sophie, Ali, Claudia, Nick and Ruth, visit the NKF website: www.kidney.org.uk/Blogs/yourstories
Claudia
Nick Ruth Ali
NKF Annual Patients’ Event
Thank you to our event sponsor:
The NKF Annual Patients’ Event was held in October 2024, offering a wonderful opportunity for patients to connect, learn, and celebrate their own journeys.
Throughout the weekend, attendees gained insights into the world of renal health and life with kidney disease while celebrating the 25th anniversary of the NKF Helpline.
The event welcomed patients, families, and healthcare professionals, providing valuable information, reassurance, and updates on the latest advancements in kidney care.
The event featured a wide range of topics, including…
• Roles, Tips, and Strategies of a Renal Social Worker with Alison Richards and Jayne Davis
• Updates from NHS Blood and Transplant with Jackie Brander
• Peer Support Benefits in Home Therapies with Patricia Gooden
• Empowering Patients with the Ready Steady Go Programme with Dr Arvind Nagra
• Symptoms in Advanced Kidney Disease, Dialysis, and Transplant Medications (sponsored by Stanningley Pharma) with Cathy Pogson and Amy Page
• Personal Stories from Patients with Kidney Disease including Sam Honeywell with his session on ‘Me, My Kidneys and Eyes’, and Erica and Zak Stanley, ‘A Stepmother’s Journey with a Child Who has Additional Needs’
Throughout the weekend, exhibitors were present, and attendees had the chance to network and share experiences.
The event concluded with an evening dinner and entertainment, leaving everyone looking forward to next year’s Annual Patients’ Event.
For the first time ever, we had the event professionally filmed so attendees and those who couldn’t make the weekend could watch again:
www.kidney.org.uk/Event/ national-kidney-federationannual-patients-event-2024
Digital Presence
Enhanced Accessibility
We have enhanced our website’s accessibility and navigation with a re-brand of our website, ensuring that all users can easily access vital information. In 2024, our web visits increased by 200% with 3 million engagements and interactions on the NKF website.
Our most viewed web pages included...
Accessibility Tool
We are proud to report that our accessibility tool remains a popular feature on our website. Our user-friendly platform is designed for everyone, regardless of language, abilities, or impairments. The most utilised accessibility features include screen readers, translation services, styling tools, and reading aids. We are committed to providing information and support in various languages, ensuring that everyone can access the resources they need: www.kidney.org.uk
Webinars
The NKF webinar series has and continues to be instrumental in providing educational resources and support to over 600 attendees, covering a wide range of topics relevant to kidney health. This year, we recorded:
Webinar Sign-Ups: 660
Webinar Views: 900 (across our YouTube channel): https://shorturl.at/PFhl6
Social Media
Our presence on social media has been impactful, sharing individual stories on Facebook and Instagram that touched the hearts of over 63,000 people.
Pictured are some of our highest reaching social posts...
Our combined reach across all channels was an impressive 378,000. We have also grown our community to 14,410 followers on our social media platforms.
Keeping Our Community Informed
The NKF’s Kidney Life magazine, released quarterly, along with the monthly In Touch e-newsletter, have both seen an increase in readership and engagement, ensuring that our community stays well informed.
Kidney Life
The Kidney Life magazine remains an essential resource for patients, offering engaging stories and the latest updates.
Recognising that not everyone has internet access or prefers digital content, we provide printed copies of the magazine. With a circulation of 12,560 magazines in 2024, distributed to renal units, kidney patients, NKF supporters, and associated professionals, we amplify patients’ voices by sharing their stories and also provide renal updates.
The magazine is also available online in an enhanced ‘flip page’ digital format on our website, www.kidney.org.uk through ISSUU and is emailed to over 13,000 subscribers.
If you would like to receive a paper copy of the magazine, please call 01909 544 999, or email your name and address to nkf@kidney.org.uk, or subscribe via our website at www.kidney.org.uk/news/kidney-life.
In Touch
The In Touch e-newsletter keeps our community informed about the latest news and opportunities to get involved.
The free monthly e-newsletter continues to be produced in-house with over 13,000 subscribers reading the publication.
Within the e-newsletter we share upcoming activities such as our NKF webinar series, Annual Patient Event, renal industry updates and much more.
Like the Kidney Life magazine, it is published online via our website www.kidney.org.uk in an enhanced ‘flip page’ digital format via ISSUU.
If you would like to opt in to receive the In Touch e-newsletter you can sign up for free at:
www.kidney.org.uk/news/ intouch-newsletter
One of our most significant fundraising efforts comes from clothes recycling through house-to-house clothes collections and clothing banks.
We also would like to say a special thank you and extend our appreciation to those who have given money in memory of loved ones and those who have graciously included a gift to the NKF in their Wills. Your support is incredibly valued to the NKF and enables us to continue our mission to support those affected by kidney disease.
Events That Inspired
Our Top Fundraisers of 2024:
1 Etty – Best Foot Forward
2 Elly – Trekking Hadrian’s Wall
3 Ranji – Best Foot Forward
4 Ruth – Best Foot Forward
5 Team Watts – Choctober
6 Nick – Abseiling
Would you like to get involved?
Here are a list of some events that have brought our community together and inspired countless individuals to support our cause. We are deeply thankful for everyone’s involvement and dedication.
• Football match
• Hadrian’s Wall Trek
• Swimming fundraiser
• Cardiff Half Marathon
• Zombie Escape 5K
• London Abseil
• Lisbon Half Marathon
If you would like to take on your own fundraising adventure, we offer a wide range of fundraising activities to fit your interests and lifestyle. From conquering the 3 Peaks Challenge to exploring the Jurassic Coast, we have a selection of treks, marathons and inflatable challenges for you.
Embrace the experience of a skydive while raising funds to support individuals affected by kidney disease, or even host your own event, whether it’s a bake sale or a quiz night, we can provide you with a free digital fundraising pack to help you organise and promote your unique event.
Visit our website to discover more exciting fundraising events: www.kidney.org.uk/Pages/Events/Category/event?Take=23
Thank You
We extend our heartfelt gratitude to all donors, volunteers, and partners who made this year’s achievements possible.
We are fortunate to have had 407 regular donors. Your ongoing support provides a stable financial foundation for our work.
More than 1,000 individuals have shown their support by purchasing items from our online shop.
Over 1,000 people have participated in our fundraising initiatives by purchasing draw tickets.
We successfully had 67 fundraising events in 2024, which includes both our annual challenges and general fundraising activities. These events have played a pivotal role in engaging our community and raising funds.
A heartfelt thank you goes to the 358 donors who have chosen to give in memory of loved ones. These contributions are meaningful tributes that help sustain our mission.
Thanks to our industry partners:
CSL Vifor
Takeda Astellas
Chiesi
Diaverum
Fresenius Medical Care
Healthy i.o
Boehringer Ingelheim Ltd
Richmond Pharmaceutical
Vifor Pharma
Alnylam Independence Products
We have also received support from 16 grant-giving organisations, which have generously contributed to our funding and enabled us to continue our impactful campaigns and projects.
We would also like to say thank you to our staff, volunteers and executive committee for their support and dedication in raising our charity’s profile this year and raising awareness of our services. Your collective efforts have been instrumental in amplifying our mission to support kidney patients and their families and have reached new heights. Thank you for being an integral part of our journey and for helping us make a meaningful difference in the lives we touch.
Grants and trust giving:
National Lottery Awards
The Marsh Charitable Trust
The Belstead Ganzoni Charitable Settlement (The Lord Belstead Charitable Settlement)
The J P Jacobs Charitable Trust
The Hedley Denton Charitable Trust
The National Kidney Federation (NKF) is a national charity that provides support and information to patients, families, and healthcare professionals affected by kidney disease. Our aim is to improve the quality of life and support for kidney patients and their families and raise awareness about kidney disease. Our patient support services include a free to call Helpline, a Peer Support Service and an array of patient information leaflets. We also work closely with healthcare professionals and lobby Government to improve kidney care for over 70,950 kidney patients suffering end-stage renal failure, and the estimated 3.25 million people identified as having chronic kidney disease (CKD stages 3 to 5) in the UK.
For more information on the support we provide, please visit our website: www.kidney.org.uk
Call our Freephone Helpline on 0800 169 09 36 or email helpline@kidney.org.uk