Touch
Our Peer Supporters Are Here For You
Our Peer Support Service provides a safe and supportive environment where individuals diagnosed with kidney disease, family members, partners or caregivers, can connect with trained peer supporters to share experiences and receive guidance.
The free to call service enables individuals to engage with peer supporters either by phone, online web chats, or face to face meetings.
Our free service is for all aspects of kidney care and management including topics such as;
• Caring for someone with kidney disease or kidney failure
• Chronic kidney disease and diabetes
• Dialysis including peritoneal and haemodialysis
• Transplantation and post-transplant experiences
• Donation processes and experiences.
We understand how isolating it can be to be affected by kidney disease, therefore we want to ensure that you have the accessibility and inclusivity that you need.
Regardless of the topic or question, we are here to connect you with the right peer supporter.
To connect with one of the NKF Peer Supporters, please 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.
For more information about the Peer Support Service please visit: www.kidney.org.uk/peer-support
NKF Webinar: Itching with Kidney Disease
Our next webinar will be joined by Dr Jacqueline Nevols BSc (Hons) BM MRCP MSc, Consultant Nephrologist, Clinical Lead for Renal Supportive Care to discuss itching with kidney disease.
The webinar will cover:
• What causes itching
• What strategies you can adopt to help your symptoms at home
• Treatment options available from the clinic
If you would like to attend the webinar, sign up for free today: www.kidney.org.uk/Event/nkf-webinar-series
NKF Webinar: Navigating Menopause
Join Dominica McAndrew (MSc, AFHEA, RGN, NMP) for an insightful webinar on navigating menopause, covering its phases, symptoms, lifestyle strategies, treatment options and long-term health considerations - empowering you with knowledge while encouraging personalised medical advice from your healthcare team.
If you would like to attend the webinar, sign up for free today: www.kidney.org.uk/Event/nkf-webinar-series
Kidney Patient Association Day
We are pleased to announce registration is now open for this year's Kidney Patient Association Day.
The event will be held at the Arden Hotel, Birmingham on Saturday 5th April 2025 starting at 10am and coming to a close at 4pm.
This is an enriching day for Kidney Patient Association members to attend, providing plenty of opportunities for networking, sharing best practises and providing a platform for your KPA to showcase its successes and exchange insights with likeminded KPAs.
The day will feature topics that have been selected by KPAs, the NKF's Annual General Meeting and Council Meeting.
If you are a KPA member and would like to register to attend please email nkf@kidney.org.uk or call us on 01909 544999. Join the NKF Executive Committee – Make a Difference!
Becoming a member of the Executive Committee is your opportunity to contribute to the governance of the National Kidney Federation (NKF), the largest kidney patient charity in the UK. As a committee member, you'll guide how the NKF provides crucial support to kidney patients, their families, and carers.
Why Join?
• You will have a voice in a national charity.
• You'll help shape policies and strategies that directly impact kidney patients across the UK.
• Meetings are accessible and flexible, with four annual sessions held via Zoom.
Who Can Apply?
• Members, not just officers, of a KPA
• Kidney Patient, Carers, family members
• Someone with an interest in Kidney Disease
Your Role
As an Executive Committee member, you will also serve as a trustee of the NKF, playing a vital role in the charity's governance. This includes opportunities to join subcommittees like Finance, Events, Home Dialysis, and more, contributing your expertise and interests to specific areas.
Skills We’re Looking For
If you have experience in any of the following, we’d love to hear from you:
• Finance / Accounting
• Marketing
• Fundraising
• Human Resources
• Events Management / Planning
How to Apply
Email nkf@kidney.org.uk or call 01909 544999 for a nomination form and submit it to the NKF office by Friday, 21st February 2025. The new Executive Committee will be elected on the day of the AGM. Your voice matters—join us to help make a meaningful impact in the kidney community!
Developing Messages to Promote Organ Donation by Faith Among Ethnic Minority Communities
Developing Messages to Promote Organ Donation by Faith Among Ethnic Minority Communities report highlights the outcomes of a vital conference organised by the National Black, Asian, Mixed Race, and Minority Ethnic Transplant Alliance (NBTA) in collaboration with NHS Blood and Transplant (NHSBT).
Held on June 4, 2024, the conference was a significant step in addressing the disparities in organ donation awareness and participation among faith-based and minority ethnic communities in the UK.
Organ donation is an issue of national importance, yet participation rates from minority ethnic groups remain disproportionately low. This event aimed to tackle these barriers by involving faith leaders, community organisations, and key stakeholders to develop tailored messages that resonate with specific religious and cultural contexts.
Faith and cultural beliefs play an essential role in decision-making about organ donation, and this conference recognised the need for faith-specific engagement strategies. Through interactive presentations, faith group discussions, and collaborative planning, the participants of this event took major strides towards crafting messages that align with religious teachings and cultural values. These messages are critical in promoting greater understanding, reducing misconceptions, and ultimately saving lives by increasing organ donation.
The importance of this conference cannot be overstated. The work presented here sets the groundwork for ongoing community engagement and evaluation, with the ultimate goal of fostering more equitable healthcare outcomes.
As we move forward, the NBTA and NHSBT remain committed to bridging the gap in organ donation rates and providing ongoing support to faith and minority ethnic communities in the future.The two organisations will continue to work together and have established a Messaging Conference Implementation Group which will take forward the ten actions arising from the Conference. This group has had its first meeting and will continue working until April 2026.
To view the report visit: www.nbta-uk.org.uk/resources/report-developing-messages-to-promote-organ-donation-by-faith-among-ethnic-minority-communities/
Share Your Story: Whether You Are a Patient or Family Member, Your Story Matters
Share your experiences and show your support to others who may be on a path similar to yours.
Whether it is about your experience with dialysis, a kidney transplant, as a live donor, family member, carer, or friend, your story could help others. It could even be sharing a story about a new hobby you have taken up since your kidney diagnosis.
Please send in your story to: sharney@kidney.org.uk.
NKF Helpline - 0800 169 09 36
Sirolimus
ABOUT YOUR MEDICINE
Sirolimus belongs to a group of medicines called immunosuppressants. As the word immunosuppressant suggests, the function of these drugs is to suppress the immune system, which is the body’s natural defence system. The aim is to dampen down the immune system enough to stop it from rejecting the transplanted kidney while still keeping it active enough to fight infections. All patients who have a kidney transplant need to take drugs called immunosuppressants.
Sirolimus is only available from your doctor. You should NOT be vaccinated with some vaccines whilst receiving sirolimus. You should receive more information about which vaccines you can and cannot receive from your consultant.
TAKING YOUR MEDICINE
The tablets should be taken consistently with food or on an empty stomach at the same time each day. You should AVOID grapefruit and grapefruit juice for one hour before taking sirolimus because it will affect the amount of sirolimus on your body.
Take the tablets as your doctor recommended, never change the dose yourself.
If you forget to take your dose, or accidentally take an extra dose, tell your doctor. You will need to have regular blood samples taken to check that the dose of sirolimus is right for you. When you come to have a blood test do not take your morning dose until after you have had your blood taken.
Sirolimus is available in tablet form and also as a liquid. The liquid must be kept in the fridge. If you are taking the tablets, the different strengths are NOT interchangeable i.e. a 1mg tablet is not the same as 2x0.5mg tablets.
UNWANTED EFFECTS
Sirolimus can cause side effects with some people. The most common side effects with sirolimus include headaches, feeling sick, rash, high cholesterol, anaemia and taking longer to heal wounds. You should inform your doctor if you suffer from any of these.
Sirolimus can also cause anaemia. You are more likely to develop infections whilst receiving immunosuppressant therapy and any infections may be worse than normal, so you should report any signs of infection to your doctor.
Some other drugs may cause problems with sirolimus, these include erythromycin, clarithromycin, fluconazole, rifampicin and miconazole. Some herbal remedies may also cause problems for example, St. John’s Wort. This is not a full list so be sure to check with your doctor or pharmacist before taking any other medication along with sirolimus.
You should avoid sunbathing and use a sunblock in sunny weather. You are recommended to see your doctor about regular skin checks and cervical cancers which may not be serious if noticed early.
Written by Olivia Kanka | Pharmacist – Advanced Clinical Pharmacist
The National Kidney Federation (NKF) cannot accept responsibility for the information provided. The above is for guidance only. Patients are advised to seek further information from their doctor.
This information is taken from the leaflet > Medication for Immunosuppression and prevention of infections in kidney patients.
To order the full leaflet email helpline@kidney.org.uk.
Other medication leaflets available from the NKF Helpline:
• Blood pressure medication
• Commonly taken drugs for kidney failure
• Over the counter drugs
• What are SGLT-1 Inhibitors
• What are statins
• Holiday/Travel Vaccines in transplant patients
NKF Fundraising
Explore the NKF Online Shop
Support a worthy cause with every purchase, by choosing to shop with us, you are contributing to our work and supporting kidney patients across the UK.
Our shop offers a wide range of products, including NKF branded merchandise, T-shirts, running vests and wristbands that are perfect for spreading awareness wherever you go!
Visit the NKF Shop today to explore our full range of products. Every purchase is a step towards supporting individuals and their families that are affected by kidney disease.
Shop now: www.kidney.org.uk/shop
Select Your Next Fundraising Adventure
Whether you're seeking an adrenaline rush or prefer a laid-back pace, 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 sky dive while raising funds to support individuals affected by kidney disease or join our yearly walking challenge for a meaningful cause, 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.
Please note: Sign-ups for the annual walking challenge will open later in the year.
Visit our website to discover more exciting fundraising events: www.kidney.org.uk/Pages/Events/Category/event?Take=23
If you would prefer to support from home there are still meaningful ways to contribute:
Join our £1 lottery for a chance to win prizes while supporting the NKF.
Consider leaving a gift in your will to make a lasting positive impact on the lives of kidney patients.
Become a regular donor and help us make a difference.
Have a collection box or pot we can send you a collection box or pot to fill, when it is nearly full we ask that you empty it and transfer the money to our bank via bank transfer. We will keep a record of the money raised and provide a certificate of appreciation for you to give the shop owner.
Every effort counts. Your involvement will help us continue providing vital support and services to those affected by kidney disease.
Website Accessibility for Everyone
Our online accessibility tool continues to gain popularity each month, and we take pride in offering a user-friendly website accessible to everyone, regardless of language, abilities, or impairments. Among the features our site provides the screen reader, translation services, styling tools, and reading aids are the most frequently used.
Currently, the top languages being translated are Hungarian, Russian and English. We are committed to delivering information and support in multiple languages, ensuring that everyone can access the resources they require.
If you're interested in trying out our accessibility tool, you can do so on our website.
Visit us today at www.kidney.org.uk and click on the accessibility link at the top of the web page.
For guidance on how to use the accessibility tool, check out our online guide: www.youtube.com/watch?v=A10Xva5xu
Patient Participation Opportunities
aCKD Patient Survey
This is a 30-minute online survey looking for adults who have been diagnosed with aCKD. This survey is being run by Adelphi Real World on behalf of a pharmaceutical company. The survey will explore people’s thoughts about aCKD, the impact of aCKD on day-to-day life and experiences with aCKD treatments.
By taking part in the research project, your views, alongside those of other people affected by aCKD, will help improve understanding about what it is like living with aCKD, and inform the creation of educational materials that help to educate others on the impact of aCKD. This is a voluntary survey, and there is no payment or other type of reward for taking part. You may be eligible to take part in this research if you:
• Have been diagnosed with aCKD;
• Are older than 18 years of age;
• Can read English;
• Are willing to spend 30-minutes on completing the survey.
Please note, all responses to the survey will remain anonymous, and will be grouped with the responses from everyone else taking part. Identifiable responses will not be shared with National Kidney Federation, the pharmaceutical company, or with any person outside of the Adelphi Real World research team. If you are interested in taking part in this research, please find the link to access the survey below. When you click on the link, it will take you to the site where the survey is being hosted. You will be asked a few questions to check if you are eligible to take part and, if you do qualify, you will be given more detailed information about the survey itself and will be asked to confirm that you would like to take part.
https://survey.euro.confirmit.com/wix/p353962720049.aspx?__userid=OpenUKlive&l=9&co=4&src=5&DLT=4 Please only complete the survey once.
Have you had a kidney transplant in the last two years?
Would you like to help us better understand how patients feel about their transplant health care?
We are looking for people to take part in an interview study.
We want to design a survey to measure the patient experience of kidney transplant care.
We are asking kidney transplant patients to be involved to help us write and test the survey.
We want to be sure the survey works for patients and is about what really matters to them.
If you think you might be interested, you can find out more here:
076 571 TransplantPREM@nhsbt.nhs.uk https://www.odt.nhs.uk/information-for-patients/
KPA Members of the NKF
Currently there are 50 Kidney Patient Associations (KPAs) and their officer who are the controlling council 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
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
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