In Touch
NKF Webinar: Holidays with Dialysis
We are excited to invite you to a very special webinar where we will explore a new, empowering way to book holiday dialysis treatments with confidence and ease, in just 3 simple steps.
Evgenia Kafousi, Operations Director at Bookdialysis, will walk us through an innovative platform that gives dialysis travellers the freedom to schedule treatments in more than 850 destinations around the world.
During the session, we will look into how Bookdialysis is simplifying travel planning for people on dialysis, offering not only a reliable booking process but also peace of mind.
You will also gain insights and tips on how to make the most out of your travels, exploring the world safely and without limits.
Whether you dream of relaxing on a sunny beach, exploring a new city, or simply experiencing a new culture, we are here to help you turn those dreams into reality.
Let’s discover together how Bookdialysis can make your travel dreams come true.
To reserve your place to our webinar, sign up for free today: www.kidney.org.uk/Event/nkf-webinar-series
NKF Webinar: Ageing Well with Kidney Disease - Recording Now Available
Our guest speaker Dr Andy Nixon recently joined us 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.
Our Ageing Well with Kidney Disease Webinar recording is available to watch back via our website: www.kidney.org.uk/Event/nkf-webinar-series
NKF Peer Support Service: Your Pathway to the Right Support
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 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 booklet 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 who 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.
Parliamentary Summit Looks At Ways to Save the
NHS Millions and to Give A Better Quality of Life to Kidney Patients
The National Kidney Federation hosted a Summit on increasing home dialysis in the UK on 15th May 2025 at Portcullis House, Westminster.
This important event marked the culmination of the National Kidney Federation's five-year home dialysis campaign and brought together key stakeholders from across the kidney care community.
The Summit addressed 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 was 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 APPKG, this summit offered a unique opportunity to translate the home dialysis campaign's findings into concrete policy changes.
Thank you to all that wrote to their MPs to attend this event.
For more information visit: www.kidney.org.uk/appkg-meetings
NKF Welcomes Prescription Freeze
The National Kidney Federation welcomes the government's decision to freeze NHS prescription charges in England at £9.90, saving patients an estimated £18 million next year.
While this offers some relief, kidney patients often fall outside the current exemption system despite requiring multiple medications to manage their condition.
For many kidney patients in earlier stages of CKD who don't qualify for exemptions, prescription costs remain a significant financial burden that can impact their ability to follow treatment plans. The exemption list hasn't been updated since 1968 and is dire need of proper review.
The NKF will continue advocating for a thorough review of the exemption list to ensure it reflects modern understanding of long-term conditions and properly supports those living with kidney disease and are active members of the Prescription Charges Coalition.
For more information about the prescription charge freeze and exemptions, visit: www.gov.uk/government/news/cost-of-living-boost-for-millions-as-prescription-charges-frozen
Becoming A Supporter of Health Equals
The National Kidney Federation has become a supporter of the Health Equals coalition, strengthening our drive to tackle the stark inequalities affecting kidney patients across the UK.
This partnership connects the NKF with many cross-party Parliamentary Champions and leading organisations - all focused on addressing the root causes of health disparities.
Health inequalities directly impact the 3.25 million people in the UK with stages 3 to 5 kidney disease. Our research shows only 15% of patients in the most deprived areas receive home therapies, compared to 22.9% in the least deprived areas. People from ethnic minority backgrounds are 3-5 times more likely to develop kidney failure.
Joining Health Equals gives us a powerful platform to ensure kidney health disparities receive urgent attention. Where you live, your economic circumstances, or your ethnic background should never determine your access to life-saving treatments like home dialysis or transplantation.
Through this coalition, the NKF will contribute specialist knowledge on kidney health inequalities to national discussions, work with Parliamentary Champions, and ensure kidney patients' voices shape health equality policies.
For more information visit: www.kidney.org.uk/news/nkf-becomes-a-supporter-of-health-equals
NHS 10 Year Health Plan: What It Means for Kidney Patients
The Government's "Change NHS" consultation has now closed, with the final submission deadline passing on April 14th, 2025. The National Kidney Federation has submitted comprehensive responses to the various consultations around specific aspects of the 10-year plan. There continues to be consultations around certain aspects of the NHS such as shaping the national cancer plan and the NKF will continue to engage with these to voice the concerns of kidney patients at the national level.
Thank you to everyone who shared their experiences and priorities through Change NHS. The Government will now be analysing all feedback as they finalise the development of the Plan. As we await the publication of the final 10-year plan (expected in mid-2025), this briefing aims to help kidney patients understand the key proposals that have emerged so far, their potential impact on kidney care, and how the NKF is working to ensure your needs are prioritised.
What is the 10-Year Plan?
The Government's plan aims to transform healthcare through three major shifts:
1. Moving care from hospitals to communities - Creating more local healthcare services including neighbourhood health centres.
2. Transitioning from paper-based to digital systems - Using technology to improve care and efficiency.
3. Focusing on prevention rather than just treating illness - Helping people stay healthier longer.
NHS England Abolition: What does it mean?
In March 2025, the Government announced plans to abolish NHS England (NHSE) and integrate its functions into the Department of Health and Social Care. This is a significant change to how the NHS is managed at the national level.
What do you need to know?
This restructuring intends to reduce complexity and create clearer lines of accountability. The 10-year health plan is still going ahead as planned despite these organisational changes. The transition will take place over approximately two years and the Government intends for day to day healthcare services to continue without disruption.
What could this mean for kidney patients?
As it stands, national kidney care policies and standards should continue to be maintained. At the NKF we will remain vigilant to ensure specialised kidney services receive proper attention during this transition and we will continue advocating for kidney patients' interests with the Department for Health and Social Care directly.
To read our update in full visit our website: www.kidney.org.uk/news/nhs-10-year-health-plan-what-it-means-for-kidney-patients
Kidney Patient Reported Experience Measure (PREM) 2024 Annual Report Out Now
The UK Kidney Association (UKKA) have released the Kidney Patient Reported Experience Measure (PREM) Report for 2024.
The report describes how people with kidney disease rated their experience of kidney care last year. It analyses the answers to 39 questions and any written comments and provides comparisons by treatment type and centre.
To read the full Kidney PREM 2024 Annual Report please visit: https://www.ukkidney.org/kidney-patient-reported-experience-measure
Membership That Matters
Join Us Today for Just £3 a Month!
Immediate Support When You Need it
(Monday to Thursday 08:30am - 5:00pm and Friday 08:30am - 12:30pm)
By becoming an NKF Member, your donation helps keep our free Helpline services available for kidney patients and their families providing vital support when it's needed most. Our experienced advisors and peer supporters are just a phone call away, ready to provide guidance and support without any waiting lists. Your membership makes this vital service accessible to all at no additional cost.
Your Donations Make A Difference
As an NKF Member, your contributions play a crucial role. The generosity that you provide allows us to offer a wide range of educational resources, reviewed by healthcare professionals, that are available to patients, carers, and renal units at no cost. Your support ensures that information reaches those who need it most.
Together We Can Transform Kidney Health
Join us in tackling health challenges and advocating for those affected by kidney disease. Your membership helps the NKF push for policies that guarantee innovative treatments and care for everyone in need. Together, we can influence change and improve outcomes for countless individuals.
Explore Exclusive Member Benefits
By joining our community, you're not only supporting our mission, but also gaining access to exclusive resources and opportunities.
Join Today: www.kidney.org.uk/member
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
IgA Nephropathy
What is IgA Nephropathy?
IgA nephropathy (IgAN) is a rare kidney condition, one of a group of conditions called glomerulonephritis, where the body’s immune system damages the kidney.
IgA is short for Immunoglobulin A, one of the types of antibody our body produces to fight infection.
It is designed to protect the gut against infection, and is generated by the gut, but also circulates in the blood. Nephropathy is a scientific term for kidney disease. In patients with IgA Nephropathy, the form of IgA molecules that circulate in the blood are abnormally sticky, and get trapped in the tiny filters in the kidney (called glomeruli) causing inflammation and damage.
What are the signs and symptoms of IgA Nephropathy?
In many cases there are no symptoms, but the damage to the glomeruli can cause some blood to appear in the urine sometimes making the urine look red or dark brown. Often, however, the blood is invisible, and only detected on routine medical check-ups. People sometimes have flare-ups of IgAN, often triggered by a cough or cold, where they see urine turn red or “coca-cola coloured”.
Normally this condition is quite painless. However, in some patients who have acute attacks after the flu, there may be some pain over the kidneys and a feeling of sickness for a couple of days.
Some people also may have:
• Protein in the urine (proteinuria) – this is likely to only be seen under a microscope but if there is a lot of protein, the urine may look frothy.
• Swelling or puffiness in parts of the body, especially in the legs.
• High blood pressure which can damage the structure of the kidney if not treated.
What causes IgA Nephropathy?
The exact cause of the disease is still unknown. IgA is known to play a role. In this condition, increased production of an abnormal IgA means that IgA gets trapped in the kidney and causes scarring and inflammation within the kidney, which can only be seen clearly under the microscope.
How is IgA diagnosed?
IgAN is often diagnosed after a routine urine test shows signs of blood and/or protein. A kidney biopsy may be conducted to confirm the diagnosis. What is seen under the microscope is that the “glomeruli”, which are the tiny structures which filter the blood to make urine, are damaged by deposits of IgA.
What will happen if I have IgA Nephropathy?
The outcome is variable, and you will need to ask your specialist how things are likely to be in your case. The possibilities are:-
1. It may continue unchanged for many years, requiring only regular check-ups with blood tests. This is probably the case in a majority of patients.
2. It may go away on its own in some cases.
3. In some cases kidney failure develops, leading to the question of dialysis and/or transplantation.
If treatment is needed, the initial aim is to protect kidney function by lowering blood pressure via lifestyle measures such as losing weight, stopping smoking and reducing salt in the diet.
What are the complications of IgA Nephropathy?
1. High blood pressure may develop. This damages the kidneys and puts a strain on the heart and the rest of the circulation. Therefore high blood pressure should be treated vigorously.
2. Kidney failure may sometimes occur. If so, it usually develops slowly, and your doctor will be able to give you an idea of how it is affecting you.
3. There may be protein leakage from the kidneys. This may be slight and only detectable on urine tests. Occasionally, there are high levels of protein leakage leading to swollen ankles and high levels of cholesterol in the blood. This is called nephrotic syndrome and requires specialist assessment and treatment.
4. There is a variant of IgA Nephropathy called Henoch-Schönlein Purpura. In this, the IgA antibodies affect not only the kidneys but also other parts of the body. A blotchy red rash may appear on the legs and buttocks. However, if you have had IgA Nephropathy confined to the kidneys for some time, it would be very unusual for this to convert to the more serious Henoch-Schönlein Purpura.
This is not an easy condition to treat, and the aim is to protect the kidneys from further damage. Usually doctors rely on treatment of the blood pressure, using medications and lifestyle changes such as losing weight and reducing salt in the diet. If the cholesterol is very high, treatment to reduce the levels may help. If protein is leaking into the urine, then medications (eg. ACE-inhibitors and SGLT2-inhibitors) can have a protective benefit on the heart and kidney function over time, as shown by recent research. Some specialists also use long term treatment with Maxepa (fish oil) tablets.
Targeted-release budesonide can help to slow the decline of kidney function by reducing the amount of the IgA protein that builds up in the kidneys. There is also lots of research happening to test other drugs to see if we can improve the treatment of IgA Nephropathy and your doctor may ask you if you are interested in taking part in a clinical trial which may allow you to access some of the newer IgA Nephropathy treatments.
For Henoch-Schonlein Purpura, doctors often use steroids (prednisolone), sometimes together with another drug, either cyclophosphamide, azathioprine, or mycophenolate.
Can I lead a normal life with IgA Nephropathy?
In most cases this condition does not affect normal life. There is no special diet that will make the disease go away or get worse. You can continue with physical exercise and sports quite safely. The condition does not generally run in families, so you need not worry about passing it on to your children. However, if you are planning a pregnancy you should discuss this with a doctor familiar with looking after pregnant women with kidney problems.
There will be some queries if you apply for mortgages or life insurance, so plan ahead and be prepared to have your doctors asked to supply a medical report.
Where can I get more information or support about IgAN?
For more information on IgAN, including its diagnosis, symptoms and treatment, visit the Leicester IgAN Research Group The Leicester IgAN Research Group | University of Leicester.
There are currently a number of clinical trials taking place to research further treatment options for IgAN. Talk to your kidney team for more information.
For more information on IgAN, including its diagnosis, symptoms and treatment visit the Leicester IgAN Research Group | University of Leicester: https://le.ac.uk/igan
Information by Dr Lisa Willcocks Consultant in Vasculitis and Nephrology Addenbrookes Hospital Clare Morlidge MFRPSII MRPharmS Consultant Renal Pharmacist. President UK Kidney Association.
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.
Call the NKF Helpline on 0800 169 09 36 or alternatively email helpline@kidney.org.uk.
The Helpline is open Monday to Thursday 08:30am - 5:00pm and Friday from 08:30am - 12:30pm.
NKF Fundraising Spring Draw Winners Announced
The NKF Spring Draw took place on Wednesday 14th May 2025, the winners are:
1st Prize Mr Baines ticket number 03123
2nd Prize Ms Gooden ticket number 00223
3rd Prize Ms Munro ticket number 02432
A BIG THANK YOU to each and every one of you who supported the draw and took part, we offered some great cash prizes!
The draw will return again later in the year so be sure to keep your eyes peeled.
Step Up for Support: Join Our Challenge this June to Help Patients and Families
Walk 70,951 steps in June and raise money to support people living with kidney disease.
Get active and improve your mental and physical health.
Get your exclusive Best Foot Forward t-shirt when you raise over £10!
Why 70,951 steps? This number represents the total number of people in the UK with a kidney transplant or on dialysis.*
Sign up now and you'll be helping to make a life-changing difference to patients and families affected by kidney disease: www.kidney.org.uk/bff2025
We already have so many supporters joining ready to kickstart the challenge next month - a BIG thank you for the incredible support you've already shown. We can't wait to start the journey with you!
Don't forget, if you are signed up to the challenge to set up your JustGiving page visit: www.kidney.org.uk/bff2025
*Please note - This figure is sourced from 'UK Renal Registry 26th Annual Report - data to 31/12/2022'.
Please note this figure will be updated later in 2025.
IMPACT Theatre Hosts Charity Night Featuring
Sponsored Signed Dance and Band Night In Memory of
Marlan Naidoo
On 5th March, Impact Theatre held a sponsored signed dance and band night to support the National Kidney Federation in memory of one of their performers, Marlan Naidoo, who sadly passed away in February.
IMPACT Theatre is a charity that works with people with learning disabilities in the West London area through performing and creative arts.
The sponsored event raised an incredible total of £2,676. A BIG thank you to IMPACT Theatre for all of your amazing support!
Our online accessbility tool on the NKF website is a handy asset and has several features designed to enhance user experience.
The most used features include:
• Screen Reader: Assists users with visual impairments by reading text aloud.
• Translation Services: Offers translation into multiple languages, this month our top translated language is Urdu.
• Styling Tools: Allows users to customise the appearance of the website for better readability.
• Reading Aids: Provides support for easier text comprehension.
Experience our accessibility tool first hand by visiting our website. Explore its features and see how it can assist you: www.kidney.org.uk
For a detailed guide on using the accessibility tool, visit our online tutorial: www.youtube.com/watch?v=A10Xva5xuzs
FREE Donations When You Shop Online
Every time you shop online you could generate FREE donations for the NKF!
It takes 2 minute to sign up to Give As You Live and their partner stores will donate a percentage of your spend back to us, at no cost to you.
It's free to do, plus there are over 6,000 stores!
www.giveasyoulive.com/join/nkf
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).
LET’S STAY CONNECTED.
Let’s work together to spread awareness of kidney disease, and support patients and fa i ies on our journey. Scan to follow us on social media:
NKF KPA Members
Currently there are 51 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
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.
