In Touch
A Big Thank You To All KPA Officers and Committee Members Who Attended Our Annual KPA Day
Thank you to everyone who attended our KPA Day on Saturday 5th April. It was great to have a mix of KPAs from across the country, ones that had just been newly formed and some of the more established ones.
The day started as a formal event with the NKF AGM and Council meeting.
Our new list of NKF Executive Committee Members is provided below:
In the afternoon we had a game of KPA Bingo and then split into groups for our breakout sessions each topic was chosen by our KPAs where best practice was shared among the groups. We will be sharing the notes from the breakout sessions to KPAs shortly. Congrats to our winners who took away a festive chocolate egg!
NKF Webinar: Ageing Well with Kidney Disease
Next month, join Dr Andy Dixon, for our Ageing Well with Kidney Disease Webinar. Andy is a Kidney Consultant and Supportive Care Lead in the Department of Renal Medicine, Lancashire Teaching Hospitals NHS Foundation Trust. Andy was awarded a PhD by the University of Manchester in 2021 for his thesis, 'Frailty Assessment and Intervention in Chronic Kidney Disease'.
Andy co-leads an NIHR Programme Development Grant that aims to understand what is important to older people living with CKD and describes care delivered to older people with advanced CKD at UK Kidney Units.
Andy is a member of UK Kidney Association Supportive Care Specialist Interest Group. As part of this role, Andy co-leads a research study exploring patient, caregiver, and healthcare professional perceptions of supportive kidney care. Andy also chairs the North West Kidney Network Enhanced Supportive Kidney Care Workstream.
To reserve your place to our webinar, sign up for free today: www.kidney.org.uk/Event/nkf-webinar-series
NKF Webinar: Holidays with Dialysis
Join us for our webinar on Holidays with Dialysis on Wednesday 4th June at 5pm. More details will become available very soon.
To reserve your place to our webinar, sign up for free here: www.kidney.org.uk/Event/nkf-webinar-series
NKF Webinar: Navigating Menopause Recording Now Available
Our guest speaker Dominica McAndrew (MSc, AFHEA, RGN, NMP) recently joined us for our menopause webinar exploring menopause phases, symptoms, lifestyle strategies, treatment options and long-term health considerations.
Our webinar recording is available to watch back via our website: www.kidney.org.uk/Event/nkf-webinar-series
The National Kidney Federation are hosting a summit on increasing home dialysis in the UK on Wednesday 15th May 2025, Portcullis House, Westminster from 2:30pm - 4:30pm.
This important event marks the culmination of the National Kidney Federation's five-year home dialysis campaign and will bring together key stakeholders from across the kidney care community.
The summit aims to address significant inequities in home dialysis provision, data from the UK Renal Registry has clearly demonstrated that patients who dialyse at home experienced substantially better outcomes during the COVID-19 pandemic. The home dialysis campaign also revealed stark inequalities in access to home dialysis, particularly among patients from disadvantaged communities. This summit is a timely opportunity to brief Parliamentarians on these critical issues and secure their support for policy changes that could significantly improve outcomes for kidney patients across the UK.
With the recent confirmation of all four officers for the All Party Parliamentary Kidney Group (APPKG) and its inaugural meeting being scheduled, this summit offers a unique opportunity to translate the home dialysis campaign's findings into concrete policy changes.
Parliamentary attendance will be crucial to ensuring that the recommendations emerging from the summit receive the attention they deserve at the highest levels of government.
Invite Your MP to our Parliamentary Summit
We want as many MPs as possible to attend the summit. If you can, please consider reaching out to your local MP by email before 30th April 2025 to encourage them to attend.
Use this template to write an email inviting your MP to attend
See the Government website for details of how to email your MP – just enter your postcode
You can add a section to the above template, explaining why your MP attending the summit is important to you.
Are you an NKF Member?
NKF Members will be automatically entered into a ballot for a chance to WIN an invitation to our upcoming Parliamentary Summit, set to take place on Wednesday 15th May 2025.
If you are already an NKF member, your entry into the draw is automatic. Should you wish to opt out of the draw as an NKF member, please send an email to nkf@kidney.org.uk
For those who are not yet members but are interested in joining, you can find more information about our membership on page 6.
Your Membership, Their Lifeline, Become a Member of the NKF Today
Join Us Today for Just £3 a Month!
For less than the price of a cup of coffee, you can become a member and make a meaningful difference.
Support When You Need It
Our Helpline advisors and peers are always ready to offer guidance support. There are no waiting lists, just a friendly and experienced voice on the other end of the phone when you call.
Your Contributions Matter
Your donation enables the NKF to maintain a comprehensive library of educational leaflets. Our leaflets are written by healthcare professionals, providing patients, carers, and renal units with essential information free of charge.
Let's Shape the Future Together
Help us address kidney health challenges and advocate for real solutions in parliament.Your donation helps the NKF to advocate for policies that ensure everyone in need benefits from innovative treatments and care.
Discover Exclusive Member Benefits
Explore the benefits available to NKF Members today. Make a difference by joining us: www.kidney.org.uk/member
Find the Right Support Network for You with Our NKF Peer Support Service
The NKF Peer Support Service is a free to call service that connects individuals living with kidney disease with trained peers who have personal experience managing the condition, either as caregivers or as kidney patients themselves. This service provides a chance for individuals to receive compassionate support, exchange experiences, and gain valuable insights from others who have faced and overcome similar challenges.
Our peer supporters are fully trained and DBS checked and are between the ages of 20 to 80 years old with a wide range of experiences including:
• Shared care
• Peritoneal dialysis
• Haemodialysis
• Home haemodialysis
• Nocturnal haemodialysis
• Balancing employment while on home dialysis
• Studying while on home dialysis
• Managing home dialysis with a young family
• Travelling while on home dialysis
• Dealing with chronic kidney disease and diabetes
• Preparing to give or receive a transplant
• Post-transplant
• Experiencing transplant rejection
• Receiving a kidney from a living donor
• Receiving a kidney from a deceased donor
In our mission to reach more individuals who could benefit from this service, we are reaching out to ask for your support in spreading the word about our service. By sharing information about the Peer Support Service within your networks, you can help connect more individuals with the support they need.
Request a FREE NKF Peer Support booklet: Our leaflet explains what peer support is, the benefits, and more.
If you would like a hard copy of the booklet, simply email your name, address, and the quantity of leaflets you would like to receive to helpline@kidney.org.uk
*Open Volunteer Opportunity*
We are specifically looking for parents who have experienced kidney failure and have undergone or are currently undergoing dialysis (either haemodialysis or peritoneal dialysis) while raising a young family.
Your experience could help us support other young families seeking help with any kidney related issues they may be facing.
Learn more about how you can help here: www.kidney.org.uk/peer-support
Call our Peer Support Service today on 0800 169 09 36 or email helpline@kidney.org.uk or visit: www.kidney.org.uk/peer-support.
Yorkshire and Humber Networks Educational Event - Highlights
On Wednesday 19th March the Advanced Kidney Care nurses in the Yorkshire and Humber region met for a face to face meeting and educational event. This was organised by the Yorkshire and Humber Kidney Network. We are extremely grateful to the National Kidney Federation for funding the event to allow it to take place.
100% of those who attended and provided feedback would be interested in attending another event such as this, showing the value of meeting and connecting with nurses from across the region and sharing experiences. Here are some comments we received from our attendees:
"Being able to meet in an informal setting was really good... I hope we can carry on and meet as sharing our experiences is very helpful and reassuring to know we are not the only ones facing some of the issues."
"The morning informal discussion with other nurses from the region was really beneficial and something which is hopefully continued. The afternoon sessions were really informative."
"It was good and a very interesting day. I was pleased to meet and enjoyed interacting with other LCC/CKD nurses, interested to know how they do and how they are managing their own workload. I have learned a few things that I may be able to apply into our own little team."
It was really valuable to be able to talk about people’s roles and responsibilities, and the challenges they currently face. Lots of ideas were shared about how to overcome challenges and improve services. Each of the 6 teams from our region were represented and able to take away with them some action points to consider implementing in their day-to-day work.
Following lunch, we were joined by some senior nursing colleagues for the educational sessions starting off with a transplant focus led by Dr Ahmed and Dr Sunil Daga. They focused on the price of suspension for someone on the transplant register, and the importance of talking about living kidney donation for all staff involved in the advanced kidney care setting. The inequity within living donor transplantation was explored based on their research.
Dr Anna Winterbottom and Professor Helen Hurst led a workshop on managing difficult conversations based on the valuable research which they have carried out. There was a particular focus on discussions around conservative care, including how we can approach these discussions and support people making these decisions.
Dr Janette Moran concluded by leading some really thought-provoking discussions around supporting people living with kidney disease through all of the uncertainty which they face and how, as healthcare professionals, we can best do that. All of the sessions wereevaluated very highly and we are grateful to our speakers for taking the time to share their knowledge and expertise.
By holding the event in person, it allowed for much more networking, meeting colleagues for the first time and renewing previous acquaintances. There are already plans in the pipeline to build upon the new network foundations which we have established.
New Dialysis Unit Opened in North East London
Barts Health NHS Trust has formally opened a new dialysis unit at St George's Health and Wellbeing Hub in Hornchurch, bringing crucial kidney care services into the heart of the community.
The state of the art facility, which opened on 10 March 2025, arrives at a critical time, with an estimated 3.25 million people in the UK living with chronic kidney disease stages three to five.
The new facility has already made a significant difference for patients like Jimmy, who has been receiving dialysis treatment since 2019. Unlike the clinical atmosphere of a busy hospital setting, Jimmy now benefits from the unit's spacious, light-filled environment that creates a more calming experience during his regular treatments. Beyond addressing his medical needs, the hub's holistic approach to care has supported Jimmy's broader wellbeing. Having missed much of his schooling due to childhood illness and being unable to work in recent years because of his kidney condition, Jimmy has found valuable support through the hub's employment guidance services. This comprehensive approach is helping him rebuild his life beyond just managing his kidney failure, addressing the social and economic impacts that often accompany chronic health conditions.
You can find the article from Barts Health NHS Trust where Jimmy shares his experiences here.
The facility is part of the larger St George's Health and Wellbeing Hub which opened in November 2024, bringing together GP services, outpatient clinics, mental health services and diagnostic facilities under one roof.
With demand for renal services growing across North East London, this community-based approach aligns with the pressing need to provide accessible, high-quality kidney care outside traditional hospital settings. The hub serves approximately 250,000 people in Havering and surrounding areas, offering services seven days a week.
The National Kidney Federation continues to advocate strongly for facilities like the new St George's dialysis unit, which exemplifies the community-based kidney care approach needed across the UK. As the NHS undergoes significant change, the NKF remains committed to emphasising the importance of accessible, patient-centred facilities that bring vital services closer to the 3.25 million people living with chronic kidney disease stages three to five.
This approach to kidney care acknowledges that patients need more than just medical treatment they require holistic support addressing all aspects of their lives, from clinical care to employment opportunities and overall wellbeing. The NKF views developments like the St George's Health and Wellbeing Hub as essential steps toward improving both outcomes and quality of life for kidney patients nationwide.
DAYLife offers healthcare professionals tools, resources and opportunities to champion home therapies and give patients the choices they deserve
Together, the Fresenius Medical Care, Kidney Care UK, National Kidney Federation, and the UK Kidney Association are working with patients and healthcare professionals to help make home dialysis more accessible and support centres in meeting national targets
Our Activities
Learn & share webinars
Working groups for each theme
National face to face events
Development of tools and resources
Knowledge Hub
The DAYLife Knowledge Hub
The Knowledge Hub empowers healthcare professionals with easy access to a wealth of information and fosters continuous learning and collaboration across the renal community, focused on home therapies
https://education.ukkidney.org/course/daylife
Our Themes
NKF Helpline - 0800 169 09 36
Looking to the Future: The Emotional Impact Following a Kidney Transplant
A kidney transplant is a procedure that offers a second chance at life for individuals suffering from end-stage renal disease. While physical healing is significant, the psychological and emotional effects of such a profound surgery can be significant and complicated. Understanding these mental impacts is important for patients, families, and healthcare providers seeking comprehensive post-transplant treatment.
1. The Rollercoaster of Emotions
After having undergone a kidney transplant, patients will experience a mix of emotions. They can range from relief and gratitude to anxiety and depression.
Joy and gratitude: Individuals tend to experience great joy and appreciation thanks to the availability of the service at hand. This is especially so for those who have spent many months on dialysis. Freedom from the regime of dialysis treatment is also accompanied by a sense of life going back to what is termed normal.
Fear and anxiety: On the other end of the spectrum, however, there exists possibility of adverse effects such as organ rejection or infections which could also cause anxiety. For example, patients may be apprehensive of their health, treatment compliance, and care related lifestyle changes for effective healing.
2. Coping with Change
A transplant often necessitates significant lifestyle changes, including dietary restrictions, regular medical appointments, and lifelong immunosuppressive medication.
Challenges of adjustment: Changes in routine can be accompanied by irritability and even grief. Some may grieve for the lifestyle they once led if ongoing personal care is needed.
And sometimes resent the new health restrictions they are required to follow. Having difficult open conversations can reduce the fear of adjustment and open any concerns they or their family may have.
Support systems: In these times, it becomes very important to build a support system. Family members and friends can be of great support to the patients regarding their mental health issues. Support systems be it in person or online give a chance to people who want to express their encounters and feelings and see how better they can cope with their challenges.
3. The Role of Mental Health
The psychosocial aftermath of a transplant is huge, but often disregarded. Reports have shown that transplant recipients are more at risk of suffering from depression and anxiety as compared to the general populace. This increased risk can be attributed to several factors:
Chronic illness history: It has been noted that a lot of patients have been chronically ill prior to their transplant, and for some, this might have drained them physically and emotionally
Medicine side effects: The use of immunosuppressive medications which are crucial in preventing rejection include both mood and cognitive impairment, which is a further demotion of emotion.
Treatment compliance: There may be a perception of pressure from self, carers or medical professionals reinforcing medication and dietary adherence; thereby a fear of losing the kidney transplant.
Identity and self image: The change of patients from people living with a chronic disease to people who have received a new transplant creates a sense of upheaval with regard to selfcare, often leading to uncertainty or confusion with respect to their new reality.
4. Strategies for Emotional Well Being
Addressing the emotional impact of a kidney transplant requires proactive strategies to promote mental health and well being. Here are some effective approaches:
• Professional counselling: Engaging with a mental health professional can provide patients with the tools to process their feelings and develop coping strategies.
• Mindfulness and relaxation techniques: Practices such as meditation, yoga, or deep breathing can help manage stress and promote emotional balance.
• Physical activity: Regular exercise can enhance mood, reduce anxiety, and improve overall physical health. It’s important for patients to consult their healthcare provider before starting any new exercise regimen.
• Education and communication: Understanding the transplant process, potential challenges, and maintaining open lines of communication with healthcare providers can empower patients and alleviate fears
5. Looking to the Future
The journey following a kidney transplant is undoubtedly multifaceted, filled with both triumphs and challenges. As patients navigate their new reality, it’s essential to foster a sense of hope and resilience. Many individuals find that, with time, they can adjust to their new circumstances, building a fulfilling life post-transplant.
While the physical success of a kidney transplant is vital, addressing the emotional impacts is equally important. By acknowledging and supporting the psychological well being of transplant recipients, we can contribute to more comprehensive care and enhance the quality of life for those embarking on this new chapter in their lives.
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.
Fundraising Events
Compare Insurance
The National Kidney Federation are excited to announce that we have partnered with Seopa to help you save money on your insurance including…
Car Insurance
Compare quotes with 120+ UK car insurance providers You could save up to £515*
*51% of consumers could save £515.24 on their Car Insurance. The saving was calculated by comparing the cheapest price found with the average of the next six cheapest prices quoted by insurance providers on Seopa Ltd’s insurance comparison website. This is based on representative cost savings from December 2024 data. The savings you could achieve are dependent on your individual circumstances and how you selected your current insurance supplier.
Click here to compare quotes today: https://bit.ly/3DRUWuM
Home Insurance
Compare quotes with up to 50 UK home insurance providers You could save up to £209*
*51% of consumers could save £209.33 on their Home Building & Contents Insurance. The saving was calculated by comparing the cheapest price found with the average of the next fourteen cheapest prices quoted by insurance providers on Seopa Ltd’s insurance comparison website. This is based on representative cost savings from December 2024. The savings you could achieve are dependent on your individual circumstances
Click here to compare quotes today: https://bit.ly/4jcKJI1
Pet Insurance
Compare quotes with 15+ UK pet insurance providers You could pay from £3.35 per month*
*Price per month for cover based on a cat, Ozzy, one year old, no known medical conditions, up-to-date vaccinations, and microchipped. Based on quote data provided by Seopa Ltd during August 2024. The quote price you could achieve is dependent on your individual circumstances.
Click here to compare quotes today: https://bit.ly/4iTXTKi
The NKF are an Introducer Appointed Representative of Seopa Ltd (FRN: 313860).
Explore More: Dialysis Friendly Countries within Two Hours from the UK
Travelling with dialysis doesn’t have to mean long-haul flights or complicated planning. With the help of Bookdialysis.com, patients can access certified dialysis clinics across Europe — including several fantastic countries just a short flight from England.
Here are three dialysis friendly countries you can reach in under two hours:
France
France remains a timeless favourite, and with cities like Paris just over an hour away from London, it’s ideal for a quick getaway. Whether you're walking along the Seine or exploring Montmartre, Paris offers a wide network of dialysis clinics to ensure your care continues without interruption.
Germany
Germany combines excellent medical care with rich culture and history. Berlin, one of Europe’s most dynamic capitals, is easily accessible from the UK. With multiple dialysis facilities across the city, you can enjoy your travels while staying on top of your treatment schedule.
Spain
From Madrid’s vibrant streets to the Mediterranean flair of Barcelona, Spain is the perfect blend of sun, culture, and reliable healthcare. Both cities offer multiple dialysis centres and are reachable from England in just under two hours.
With Bookdialysis.com, your health travels with you. Plan with confidence, book in advance, and enjoy your next adventure — safely and comfortably.
Visit: https://www.bookdialysis.com/en
The National Kidney Federation Supporting Research Initatives
Liberating Research, a patient and carer research community, are currently conducting a market research study with people living with IgA nephropathy (IgAN). The research looks to build a better understanding of what it is like living with the condition and are looking to speak with people living in the United Kingdom who are interested in sharing their experiences of this condition.
You can read more about Liberating Research here: www.liberatingresearch.com
About the Research:
Everyone who applies will be contacted to check their eligibility in full, prior to being invited to take part in the IgAN research study as outlined below:
• A 135-minute online diary, spread over 6 weeks (weekly participation required) via a mobile App.
• A smartphone or tablet will be required to participate in the online diary board.
• Participants will be paid £110. 10% of this incentive (or more if you wish) will be donated to your choice of listed registered health charities.
If you are interested in participating, please register using the below link: https://www.liberatingresearch.com/projects/435/505
Supporting Representation from Your Community in a Campaign Addressing Bias
Chiesi is conducting research into how people across the UK and Ireland who are living with certain diseases are affected by bias – whether from the general public, healthcare professionals, their own family and friends, or even from themselves. Following anecdotal feedback including from patients and patient advocacy groups, Chiesi understand that feelings of stigma, blame, guilt, shame and judgement to be a common occurrence for people living with conditions across the disease areas we work in including respiratory, transplantation, neonatology and rare disease.
The findings from this survey will be used to inform a communications campaign (non-product related) which aims to advocate for greater empathy and support. By participating, patients and caregivers will have an opportunity to voice their experiences and contribute to an important conversation about breaking down stigma and bias.
To enter the survey, please visit: https://survey.opiniumresearch.com/gTEfJu
Healthcare Experiences for Long Term Conditions
If you have a long-term condition that you have ever accessed healthcare for, please consider 10 minutes of your time to fill out this survey.
https://run.pavlovia.org/pavlovia/survey2024.1.0/?surveyId=8dc91e65-27cb-45e9-a209091f99856747
Research Study CKD
https://app.onlinesurveys.jisc.ac.uk/s/healthtechnologywales/ppi-survey
NKF KPA Members
Currently there are 51 Kidney Patient Associations (KPAs) who are members of the NKF. Please find the details below of the KPA's available or for more information please contact the NKF office on 01909 544 999 or email chris@kidney.org.uk
Addenbrooke's KPA
Barts Renal Patients' Association
Bradford KPA
Bristol Area KPA
Chesterfield KPA
Colchester KPA
Coventry & Warwickshire KPA
Doncaster and Bassetlaw Kidney Association
Dorset KPA
Dudley KPA
Dumfries & Galloway KPA
Exeter & District KPA
Friends of Derriford Hospital Kidney Unit
Gloucestershire Kidney Patients' Association
Guy’s & St.Thomas’ KPA
Heart of England KPA
Humberside KPA
Ipswich & District Kidney Association
Isle of Wight KPA
Kent KPA
King’s KPA
Kernow KPA
Leicestershire KPA
Lister Area KPA
Liverpool KPA
Manchester Royal Infirmary KPA
Manx KPA
North East Kidney Patients' Association (NEKPA)
Northamptonshire KPA
North Staffs & South Cheshire KPA
Nottingham and Notts KPA
Orkney KPA
Queen Elizabeth Hospital KPA
Royal Derby KPA
Royal Free Hospital KPA
Royal London Hospital KPA
Sheffield Area Kidney Association (SAKA)
Scottish Kidney Federation
Shropshire KPA
Six Counties KPA
South Eastern KPA
South East Scotland KPA
Southport Kidney Fund
St Helier and Surrey KPA
Tyneside KPA
United Norwich KPA
Wessex KPA
West London KPA
West Riding KPA
Wrexham Maelor KPA
Ysbyty Gwynedd KPA
Associate Members
British Association of Social Workers (BASW) Danielle's Flutterbyes
K.D.A.R.S
Kidney Cancer UK
If you are a Kidney Patient Association that would like to become an NKF member please contact chris@kidney.org.uk or call 07908 845713.
