Once again we have some really interesting personal stories from our readers which I’m sure you agree offer inspiration and insight. The fourth article on kidney transplantation also appears in this issue –this time looking at faith and organ donation among Black and ethnic minority groups.
On page 5 is a link to our readers’ survey. Spiralling costs for print requires us to consider how widely read the printed version of Kidney Life is, and how you think we might improve and develop content from your perspective. The aim is to continue with the printed version of the magazine and so your thoughts will be very valuable. You could be in with a chance of winning a £25 Amazon voucher so please take a couple of minutes to help us!
Check out the latest information from Kidney Beam, which may help you if one of your resolutions this year was to move more! We also have an article about renal social work which was inspired by a presentation at the patients’ conference in October plus an update on NKF’s Peer Support Service.
The wordsearch is a little different this time, have fun! As ever your feedback is very welcome. Enjoy…
Best wishes
Annie Taylor Editor
NKF OFFICERS
Chairman – David Coyle
Co Vice Chair – Caryl Bryant
Co Vice Chair – Tarsem Paul
Treasurer – Mike Sinfield
Secretary – Brian Child
NKF TEAM
Andrea Brown – Chief Executive
Pete Revell – Head of Marketing & Fundraising
Donna Blizard – Office Manager
Sharney Warren – Communications and Marketing Officer
Fiona Broomhead – Senior Office Administrator
Chloe Ainsworth – Social Media and Website Coordinator
Heather Mooney – Accounts Administrator
Chris Talbot – Membership Development Lead
Linda Pickering – Helpline Advisor
Stephen Emmerson – Helpline Advisor and Peer
Support Coordinator
KPA Day 2025
Arden Hotel, Birmingham Saturday 5th April – 10am – 4pm
Registration is now open Saturday 5th April
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 like minded 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.
KPA DAY 2025 PROGRAMME
10.00
and
Everyone attending must call or email to register for the event which is free to attend. Lunch and refreshments will be provided. Please note that the KPA Day is only for KPA members and NKF friends.
Join the NKF Executive Committee –Make a Difference!
Contribute to the governance of the UK’s largest kidney patient charity. As a committee member, you'll help shape policies and strategies supporting kidney patients, families and carers. Why Join?
• Influence a national charity
• Shape impactful policies
• Participate in four Zoom-based meetings annually Who Can Apply?
• KPA members (not just officers)
• Kidney patients, carers, family members
• Anyone with an interest in kidney disease
Your Role
Serve as a trustee, contribute to governance, and join subcommittees like Finance, Events, and Home Dialysis.
Desired Skills
• Finance/Accounting
• Marketing
• Fundraising
• Human Resources
• Event Management How to Apply Contact nkf@kidney.org.uk or call 01909 544999 for a nomination form by Friday 21st February 2025 Elections take place at the AGM. Make your voice heard – help create lasting impact in the kidney community!
KPA Membership Development Activities
Chris Talbot describes what he’s been doing in the first six months of his role and his plans for the next year.
As the Membership Development Lead for the National Kidney Federation, my role involves supporting the 50 Kidney Patient Associations (KPAs) across the UK, assisting in the establishment of new KPAs in areas currently without representation, and working to grow individual membership for the NKF. As a kidney patient myself, having undergone a transplant in 2019, I am committed to this work and passionate about ways I can help to support the kidney community.
My first six months at the NKF have been incredibly busy but immensely rewarding. From the outset, I set a goal to connect with as many KPAs as possible. So far, I’ve had the privilege of meeting with 38 of the 50 KPA Chairs and am actively working to meet the remaining 12 soon. When I joined, there were 49 KPAs, and I was thrilled to assist with the onboarding of the Dumfries and Galloway KPA alongside my colleague Fiona.
Currently, I’m focusing on establishing additional KPAs across the UK, including groups in Wirral and West Cheshire, Lancashire and South Cumbria, Salford, and Basildon. While there’s a lot of work to be done with these emerging groups, the future looks very promising for all of them. If your renal unit doesn’t currently have a KPA and wasn’t mentioned above, please don’t hesitate to reach out to me. I’d be delighted to assist in setting up a group for your area.
I have also been focused on increasing the number of Associate members for the NKF, with the most recent addition being the UK Renal Social Work Group. I was especially pleased to welcome Danielle’s Flutterbyes, a highly active and supportive charity for young kidney patients in the East Midlands. This charity has been particularly supportive of me, helping me participate in three British Transplant Games.
I’ve gained valuable insights from my meetings with the KPAs I’ve engaged with so far. While each group is doing fantastic work in their respective areas, many are facing similar challenges. A primary issue has been the lasting impact of the Covid-19 pandemic. During lockdowns, and particularly due to the shielding required for many kidney patients across the UK, most KPAs saw their activities come to a standstill.
Regaining the momentum they had before the pandemic has been a significant challenge, often feeling like an uphill battle. However, with restrictions in units now largely lifted, there is hope that this will provide much-needed support for their efforts. Other challenges include attracting younger members and increasing active participation on committees, which are both areas I want to offer my support to KPAs with.
I had the privilege of attending my first Annual Patients’ Event in October 2024, and it proved to be an incredibly rewarding experience. The weekend was filled with excellent contributions from inspiring speakers and exhibitors. It also provided a wonderful opportunity to network and connect with new people, including KPA representatives, kidney patients, carers, and their families. I’m already looking forward to this year’s event and hope to share some 'save the date' details soon!
Looking ahead, I’m eagerly anticipating this year’s KPA Day, set to take place at the Arden Hotel in Birmingham on Saturday, April 5th. We have an exciting agenda planned, with engaging activities and important topics to discuss. I’m particularly looking forward to spending the day with KPA members, reconnecting face-to-face, sharing best practices, and fostering collaborations that will ultimately benefit kidney patients.
As for what 2025 holds in my role, I have several key goals. I aim to ensure that all KPAs are thriving, to strengthen regional networks, and to make them more effective in influencing positive change within the NHS. I also want to encourage younger kidney patients to get involved with their local KPAs, empowering them to make a meaningful difference in their own kidney journeys. Additionally, I plan to place a strong emphasis on the 'Federation' aspect of our charity, demonstrating how collaboration and collective efforts can significantly benefit kidney patients across the UK.
This year promises to be an exciting one, and I’m looking forward to working with our incredible community to achieve these goals.
Chris far left
Offering a helping hand for people affected by kidney disease, NKF’s Peer Support Service has recently expanded its reach and the 22 fully trained supporters are now helping anyone with queries and questions, or needing guidance and support about living with kidney disease. The service was originally for people dialysing at home.
The Peer Support Service can now help individuals living with kidney disease or caring for someone with kidney disease or kidney failure; chronic kidney disease and diabetes; dialysis, including peritoneal and haemodialysis; transplantation and post-transplant experiences or donation processes and experiences, as well as other issues.
Callers to the service are matched with one of the Peer Support Service team members who can relate to the caller’s experience and can provide information, guidance and support.
All 22 NKF Peer Supporters are fully trained, DBS checked and range in age from 25 to 80. They bring a wealth of personal experiences, including balancing employment or studies while on dialysis treatment, managing home
NKF's unique Peer Support Service has expanded Reader Survey
dialysis with family responsibilities, navigating chronic kidney disease and diabetes, preparing for a kidney transplant, and donation processes.
Andrea Brown, NKF Chief Executive “We are delighted to expand our National Peer Support Service to everyone impacted by kidney disease. Our experienced peer supporters are available to assist with any questions. Kidney disease can feel isolating and we want people affected to know they are not alone - our national service is here to support them.”
Anyone can connect with the NKF Peer Supporters by calling the NKF Helpline on 0800 169 0936 or by emailing helpline@kidney.org.uk which is open Monday to Thursday 08:30am - 5:00pm and Friday from 08:30am - 12:30pm.
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A Gift of Life 40 Years On
By Myetta Brown
October 2024 was the 40th anniversary of my transplant. My health problems started in 1978 with very bad headaches which were put down to migraine to begin with. As I had always suffered with eczema, hay fever and asthma it was assumed that migraine was the next step.
Eventually, in early 1979 it was found that I had very high blood pressure - in the days of the mercury blood pressure cuff, mine was at the top of the rangesomething like 200/180.
The GP arranged an appointment with the Renal Unit at St Marys in Portsmouth. Fortunately for me my GP had worked at the unit and recognised the problem.
My Mum and I attended the appointment and much to her dismay, I was immediately admitted to hospital and not allowed out of bed until my blood pressure reduced to something like normal.
My kidneys were failing. Mum and my brother had blood tests to see if they were a match for me, but no, neither were close enough to risk being a donor. I had a biopsy, which was not pleasant, and I had been told I would be in hospital for 24 hours, how wrong can you be! I lost a lot of blood and had to have transfusions, so seven days later I was allowed home.
In December 1979 Clive and I were married, and as I was encouraged to live as normal a life as possible, I continued to work part time, then in the summer of 1980 I was put on a low protein diet to help my kidneys keep going a bit longer.
During those years on the diet my Mum and friends were very helpful. Clive is very interested in pre-war vehicles, so we had many days out with the cars. We went to village shows and if Clive was busy organising things, I would be sitting on a blanket near the car and someone would always be near me, as I tended to fall asleep.
I was on this diet until July 1983, when I finally had to go on dialysis. I still continued to work part time and my consultant gave me the choice of Haemodialysis or Continuous Ambulatory Peritoneal Dialysis (CAPD). I opted for CAPD as this seemed to give a more normal life style, rather than having to attend the dialysis unit two or three times a week.
So 15 months of CAPD started. I had to be very careful when changing my fluid that everything was clean and that I didn’t touch the connections, as this could cause infections which could result in peritonitis. I didn’t ever change my fluid if I was tired, and if we were going out I would change the fluid beforehand so that I didn’t have to bother when we got home. It wasn’t worth the risk of infection to do otherwise.
Finally my call came for a transplant on 22nd October 1984. That evening remains in my memory so clearly, probably because I was preparing a dinner for the following evening for guests which I had to cancel rather hastily. I was a bag of nerves at this point, not really knowing what to expect. So that evening I went to the renal unit in Portsmouth and had the operation the next day. The day after my op when Mum visited me, her first impression was that I had bright eyes and pink lips. I stayed in hospital for nine days, and then went home to recuperate. Since then I have had a full, happy and healthy life.
During this time my husband Clive and I managed to go on holiday to Devon. We stayed in a caravan for a week and took a trailer with all my kit which included a hot water bottle to warm up the fluid. We used to go out for days with the car club, but I couldn’t change my fluid while we were out, so on the way home I would drain my fluid so that I was ready to change the bag as soon as we got home.
Finally my call came for a transplant on 22nd October 1984. That evening remains in my memory so clearly, probably because I was preparing a dinner for the following evening for guests which I had to cancel rather hastily. I was a bag of nerves at this point, not really knowing what to expect. So that evening I went to the renal unit in Portsmouth and had the operation the next day. The day after my op when Mum visited me, her first impression was that I had bright eyes and pink lips. I stayed in hospital for nine days, and then went home to recuperate.
Since then I have had a full, happy and healthy life.
Clive and I retired in 2010 and since then we have visited Turkey, taken a cruise to Norway, been on several holidays in France, and I suppose the biggest challenge we experienced was a tour of the south west of India on a motorbike with a crowd of our friends!
My thanks go to everyone who helped me during those five years pre-transplant, particularly my Mum, my husband and friends, but most of all to the family who lost a loved one and donated their organs to give a life to someone else. The saying ‘a gift of life’ is so true.
I have never been found out what caused my blood pressure to go up all those years ago but if I ever hear anyone saying they have a problem with their blood pressure I warn them of the potential danger of not getting it sorted out.
Myetta at the start of dialysis in 1983
Get more active in 2025 with Kidney Beam
Kidney Beam is an online video exercise, education and lifestyle app designed especially to help people living with a kidney condition to start doing more physical activity and look after their wellbeing.
The platform was first created to help people with kidney disease shielding during the Covid-19 pandemic but has now progressed to deliver over 25,000 classes to members across the UK and also internationally.
Kidney Beamers, as the app’s members are affectionately called, can access step-by-step online programmes, on-demand exercise sessions, education on managing kidney health, and wellbeing support, all delivered by specialists in kidney disease or those with lived experience of the condition.
In a landmark clinical trial published in 2024, Kidney Beam was proven to significantly improve people’s mental health, physical function, tiredness, anxiety and depression, and ability to self-manage their care. It was also shown to help save money for the NHS by reducing the need for people to go to hospital.
Professor Sharlene Greenwood, a specialist renal physiotherapist from Kings College Hospital London, set up Kidney Beam to give better access to physical therapy and wellbeing support tailored for people with kidney disease.
Sharlene says, “If one of your 2025 goals is to move a little more and take better care of your kidney health, then please do take a look at Kidney Beam. Even small improvements in keeping active, eating healthily and looking after your mental health can have a big impact. Classes have been designed for all levels, and you can go at your own pace in the privacy of your own living room - with the additional support of our expert team and our friendly community.”
Mrudula, a 78-year-old Kidney Beamer who has completed over 300 classes on the platform to date, says, “Kidney Beam is a great resource for kidney patients. It gives us the ability to reclaim control over our lives and over our health. Kidney Beam has transformed my life - it has allowed me to safely exercise with other people like me. It’s like a small family - and I have noticed a big improvement in my mental health.”
Tailored Programmes Based on Health Needs
In order to meet specific and more complex health needs, and also ensure there are options available for people of all abilities and confidence levels, the expert team at Kidney Beam have created several bespoke programmes available on the platform.
Seated Sessions
These sessions are all delivered in a chair to help people who are unable to stand up to exercise. The aim of the programme is to help people start moving, even if limited in mobility, and help with posture, breathing control, mobility, flexibility, mindfulness, and strength.
Get Started: Beginner’s Exercises
Designed for those who are new to exercise, this special beginner’s series contains eight activity classes to help gradually build strength, cardiovascular fitness and endurance before progressing on to another activity or programme.
12 Week Kidney Rehab Programme
Relevant for all people with kidney disease, this programme includes two movement classes and one education class per week. Exercises include upper body strength, cardio, breath control, lower body activity, some moderate circuit training and some aerobic exercises - plus learn more about how your kidneys work and managing symptoms.
Dialysis Exercises
Designed for people to complete some gentle exercises and stretches while receiving their dialysis treatment, whether in a chair or bed. The movements are adaptable and can be completed without disturbing the dialysis site.
Post Transplant 'Fresh Start'
A combined education and exercise programme, the Fresh Start series has been designed to support people who have recently had a kidney transplant and are now ready to start moving again. It aims to increase fitness following the operation, and also increase knowledge on important topics such as diet and selfcare after the procedure.
There are several other programmes available on Kidney Beam, including a programme tailored specifically for people with Polycystic Kidney Disease (PKD), one to help living kidney donors prepare for their donation, a specific series aimed at people going through menopause, plus several aimed at helping people to find a new activity they enjoy such as Pilates, yoga or strength training. The team are also planning a special mental health programme to go live in 2025.
N James is a Kidney Beamer and transplant recipient who has completed over 90 classes on the platform. She says: “Prior to my diagnosis, I was a fit and outgoing person until my Chronic Kidney Disease (CKD) progressed into stage 5 and I ended up on dialysis. I’m forever grateful to a deceased donor for a priceless gift of a kidney, which gave me a second chance. Regardless of ups and downs, I am keen to restore my fitness level as well as to maintain my mental health. After surgery, I simply was terrified to start any exercises due to anxiety of injuring my new kidney. The Kidney Transplant Programme was an excellent way to start; it equipped me with basic but essential tools for my rehabilitation journey, such as healthy eating, understanding of cravings, and simple but effective exercises.”
As well as step-by-step programmes and on-demand classes, the Kidney Beam and Kings College Hospital London team also run 'Get Active, Stay Active' live group classes on Mondays to Thursdays. Many Kidney Beamers say that having a set time to attend a live class alongside other people living with the same health condition, helps to motivate them to stick with a routine - plus they enjoy being able to interact with the instructors, who will tailor the activity if requested.
Kidney Beam is currently free for everybody in England and may be free in other areas of the UK depending on whether your local health provider has sponsored the platform. The team are working hard to secure free ongoing access for everybody across the UK via the NHS.
The Kidney Beam service is run in partnership with King’s College Hospital and with support from various renal organisations including the National Kidney Federation, Kidney Research UK, Kidney Care UK, UK Kidney Association, Kidney Wales and The Punchestown Kidney Research Fund in the Republic of Ireland.
If you’d like to sign up for the platform, simply head to www.kidneybeam.com, click 'Get Started' and enter a few details into the easy registration process.
Amy, Emilia and me this summer with dogs Blackberry and Badger
Adrian Mole –A Life Story (not a diary)
You
did read it right and of course I did have to ask the question! Here is Adrian’s inspiring story of tenacity, determination and keeping going despite the odds, in his own words, Ed.
Yes, this is my real name, in fact I’m four months older than the fictional character!
I had a great childhood, parents Lisbeth (Lis) and Alec and a sister Rebecca who is three years older than me. We had a pretty idyllic childhood with horses, dogs, cats and eight acres of land to play on in the Sussex village of Five Ash Down. I went to school at Great Walstead (independent school) until the age of 13 when I attended Uckfield Comprehensive. I’m not really very academic!
The only problem I had health wise as a youngster was Osgood-Schlatter Disease which resulted in both legs in plaster at different times.
Incidentally at the age of 13, ‘The Secret Diary of Adrian Mole Aged 13 and ¾’ was published and serialised on Radio 4 so I’ve had to live with that since then ����
After school I trained to be a paint sprayer in the automotive industry. I bought a Motocross bike when I was 18 and competed for the next 8 years. These were some of the best days of my life. When I stopped racing I was suffering with what I thought was a lack of fitness, but I think this actually was the start of kidney disease.
In 1993, a friend and I started 'Paragon' (a garage specialising in Porsche) and by 1995 I was suffering from high blood pressure and still not sure what was going on! Early 1996 my kidneys failed, I received dialysis in Brighton at the Royal Sussex County Hospital.
Little did I know at the time how kidney disease would be with me for the rest of my life. I just thought that I would have a kidney transplant and that would be it done and that I’d just carry on with life just as I had before. So, in the middle of 1996 I had my first kidney transplant with a kidney donated by my mother. I carried on with my life, still working at the Paragon and at this stage I moved to Mayfield in East Sussex to my first house. Three years after my transplant I decided I’d had enough of the motor trade. My outlook on life had changed, I was also suffering from anxiety and still visiting hospital with various related problems so I sold my half of the business to my partner. Life carried on and I did a little bit of building for a friend of mine and learned a new trade. This led me to a new career renovating properties and moving up the property ladder.
In 2003, I met my wife Amy. We lived in a 200 year old coach house that I’d renovated into a home for us. Then in 2005 I started a property maintenance business in London with offices in Fulham. In 2006 Amy and I married and we moved to the village of Farningham in Kent.
Then in 2008 I started to feel unwell again, and after tests and multiple hospital visits, it transpired my first kidney transplant was failing. On Friday, 13 February 2009 I had my second kidney transplant. This kidney was kindly donated to me by my lovely sister Rebecca. In 2012 I decided that working in London was not for me and I was not seeing my two-year-old daughter Emilia as much as I should be, and so I sold my share of the business. I then developed the house we were living in by putting a glass tunnel joining our house to another coach house. I then went on to purchase another house in the village which was derelict, and I completely renovated it. I was also working on many other listed properties in and around the village we live in.
Then once again, in 2017 my second transplant started to fail. I went back onto dialysis travelling to King’s Denmark Hill Hospital (part of Kings College Hospital) for the first month of dialysis. Then to Bromley South followed by Darent Valley Hospital and finally into King’s Sydenham dialysis unit to be trained on home haemodialysis. I continued to work on properties and having dialysis at home was a godsend. I’d work during the day and dialyse in the evenings, in the room we converted to house my dialysis machine and consumables.
In 2018 we got planning permission to build a house on a plot of land we had. I jumped into this once again and got building with a small team. We built a beautiful house and on 14th December 2021 we moved in.
On 2nd January 2022 my fistula stopped working. I attended King’s Hospital where I had surgery for a new fistula. Unfortunately, shortly after I had my new fistula and a line in for dialysis, I contracted an infection and had a long six months in King’s Hospital Renal Unit battling sepsis. I had a previously replaced knee taken out and a temporary knee installed. Finally I had open heart surgery as the sepsis had taken out a mitral valve. So unfortunately, nearly three years after going into hospital with a failed fistula I’ve been unable to return to work, but I can do various jobs around the house and that keeps me sane. I’m currently awaiting a third transplant but due to Covid, sepsis and a few other issues it’s been seven years back on dialysis. I’m really looking forward to receiving a third transplant in 2025.
I’ve always been a pretty optimistic person. Luckily we manage to go on holiday at least once a year although always the same place in Spain where they have a fantastic dialysis unit in Huercal-Overa which is only a 30-minute trip from the house in Spain.
I’d like to thank my family and friends for their continuous support over the years. And my thanks to for the Sydenham Dialysis Unit Teamconsultant, nurses and clerical staff. And really for all the people in the NHS for their care, service and dedication over the years.
The house I built while on dialysis, I guess to show that anything is possible
My mother Lis and I in 1996 after my first transplant
Addressing Organ Donation Challenges within Faith and Ethnic Minority Communities
This, the last in our current series of articles looking at organ donation and the variation that exists. The disadvantages faced by kidney patients from ethnic minority background waiting for a transplant in the UK have been known for many years. These patients, on average, wait longer for a transplant compared to white patients. Also, the number of people who register to donate organs from ethnic minority background has been consistently low; in 2023/24, 12% of the registrants were from ethnic minority background compared to over 18% of the UK population from ethnic minority background. The National Black, Asian, Mixed Race and ethnic minority Transplant Alliance (NBTA) was established over 10 years ago to address these inequalities. NKF is a founder member of NBTA (nbta-uk.org.uk).
This article provides an overview of the current situation and information about two leading community groups with a national reputation for addressing these challenges.
The Latest Data
NHS Blood and Transplant (NHSBT) data on organ donation and transplantation by ethnicity for 2023/24 is set out in the graph below. It shows that over the last five years, the following changes have taken place in relation to ethnic minority patients.
• 30 % increase in the number of patients waiting for a transplant (mainly kidneys)
• 2% increase in the number of transplants
• 21 % fall in living kidney donors
• 21% fall in deceased organ donors
Ethnic minority donor, transplant and waiting list summary
Overview from Kirit Modi, MBE, Honorary President NKF and NBTA
Organ donation is an issue of national importance, yet participation rates from minority ethnic groups remain disproportionately low, despite actions taken by many people. Covid had a significant impact on organ donation among ethnic minority groups and we are still recovering from it. A conference to address these issues among faith groups was arranged jointly NHSBT and NBTA in June 2024. The aim was 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 decisionmaking 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.
A report from the conference is available from the NBTA website
Report: Developing Messages to Promote Organ Donation by Faith among Ethnic Minority Communities - NBTA.
The conference was very successful with amazing energy and enthusiasm throughout. The evaluation results are set out in the report. Presentations from the four excellent speakers are also available on the NBTA website.
Ten actions emerged from the conference and NHSBT and NBTA are working in partnership to implement these actions. An Implementation Group will deliver this work over the next two years. It's anticipated that the actions will make a significant contribution to changing attitudes to organ donation and transplantation among faith groups.
Orin Lewis OBE, Co-founder and Chief Executive at ACLT, and Chair of NBTA describes the role of ACLT in raising awareness and increasing understanding of organ donation
At ACLT we are committed to increasing the number of people registered as organ donors, both living and deceased, while addressing the severe shortage of donors from Black and ethnic minority backgrounds. Diversifying the donor registers is a critical step toward equitable healthcare access.
Deceased Donors Living Donors Transplants Transplant list
Currently, we are appealing for help for Ethan Wilson, a 4-year-old boy urgently in need of a kidney transplant. Ethan suffers from prune belly syndrome, a rare condition affecting 1 in 40,000 babies, which has led to chronic kidney disease. With only one functioning kidney operating at 8% capacity, Ethan endures nightly dialysis for 12 hours. As Ethan is of mixed heritage - Nigerian on his mother’s side and English Scottish on his father’s side, finding a compatible donor is challenging due to the complex role of Human Leukocyte Antigen (HLA) markers in transplantation, which are often linked to ethnicity.
Ethan’s story highlights the broader struggles faced by kidney patients from ethnic minority backgrounds in the UK. Patients of African Caribbean, Asian, and mixed-race heritage are more likely to have rare blood and tissue types, making it harder to find compatible donors. As a result, they often face longer wait times for transplants compared to Northern European patients. This disparity stems from a combination of cultural, systemic, and medical factors.
Ethnic minority groups are significantly under-represented among organ donor registrations, with only 1.5% being Black and 6.7% Asian. This under-representation limits the pool of potential matches. Several barriers contribute to this disparity, including language barriers, a lack of culturally tailored information, and persistent misinformation. Misunderstandings about organ donation’s compatibility with religious practices also discourage participation, even though most major religions support it. Unfortunately, these topics are often not addressed in faith-based discussions.
Prafula Shah, Chair of the Jain & Hindu Organ Donation Alliance describes Inspiring Change: JHOD's Mission to Save Lives through Organ Donation
At the Jain and Hindu Organ Donation Alliance (JHOD), our mission is clear: no one should die waiting for an organ transplant. We are passionate about raising awareness of both living and deceased organ donation within Jain and Hindu communities across England, breaking barriers of misinformation and encouraging life-saving conversations.
Recognised by NHSBT and the wider Indian community as a leading voice in promoting organ donation, we have worked tirelessly to address a critical challenge: consent rates for organ donation among ethnic minority families remain lower than those of white families.
Many families from ethnic minority backgrounds decline organ donation because they feel it conflicts with their religious or cultural beliefs, or because they are unsure of their loved one’s wishes. JHOD works to bust these myths and encourage open conversations within families and communities to leave no doubt about their decision to donate.
Over the past five years, in partnership with NHSBT, we have developed culturally sensitive resources - leaflets, videos, and outreach campaigns - delivering our message directly to the communities we serve.
Health disparities further exacerbate the issue. Conditions like diabetes and hypertension, more prevalent in South Asian, Black, and Caribbean communities, increase the risk of kidney disease. Systemic inequities in healthcare, such as delayed diagnoses and limited access, worsen outcomes and reduce transplant eligibility. Additionally, mistrust in the medical system, fuelled by instances of discrimination, deters many from engaging with organ donation programmes. The introduction of the UK’s 'opt-out' system in May 2020 intensified this mistrust, with some believing it signalled governmental exploitation, particularly among ethnic minority communities.
Addressing these challenges requires a multifaceted approach. Community engagement, culturally tailored education, and systemic reforms are essential to increasing organ donation rates and ensuring equitable access to transplants for ethnic minority patients. Ethan’s case underscores the urgency of this work, emphasising the critical need for diverse donors to save lives.
We’ve raised awareness at key religious events such as Diwali, Paryushan, and Trafalgar Square’s Diwali in London celebration. From London to Leeds, Milton Keynes to Manchester, our volunteers have engaged over 10,000 people in face-to-face conversations, with our social media campaigns reaching over a million people.
Our impact Is growing thanks to the dedication of our trustees, volunteers, and partners, we’ve become a trusted presence in cities with large Jain and Hindu populations, from Wolverhampton and Leicester to Liverpool and Bolton.
We’re committed to expanding this life-saving work in 2025 and beyond, including into Wales. We want to ensure that every family is empowered to make a positive decision about organ donation.
JHOD is equally dedicated to promoting living kidney donation, providing direct support to potential donors in partnership with NHS hospitals. For several years, we’ve worked closely with the Royal Free Hospital to offer one-on-one guidance to individuals considering living donation.
This year we are expanding this work through partnership working with Imperial NHS Trust and serving Hammersmith Hospital Transplant Centre, which includes working with Hammersmith, Ealing and Northwick Park Hospitals. We will also be launching a national peer support programme in Spring 2025.
I bring a deeply personal perspective to our work. As a living kidney donor I’m passionate about encouraging others to consider donation and share my own journey so that more lives can be saved.
At JHOD, we believe that organ donation is a gift of life - a gift that transcends cultural and religious boundaries. Together, we can ensure that no one in our communities dies waiting for an organ transplant. For more details, visit: www.jhod.org.uk
Ethan and his family
All you need to know about Renal Social Work
At October’s NKF Annual Patients’ Event the first session was delivered by Renal Social Workers Alison Richards and Jayne Davis who told us about their work. I caught up with Jayne recently to ask for more information to share with Kidney Life readers who couldn’t be at the conference.
I began by asking Jayne exactly what a Renal Social Worker is…
We are qualified social workers working together in the professional multi-disciplinary renal team. We work in both adult and children’s services, in hospitals and dialysis units and we work closely with many kidney charities and we have links with local authority social work and therapy teams. Many of us have extensive previous experience in community social work which enables us to draw on that experience when offering practical support and advice to patients and family members living with kidney disease.
What is the scope of issues you are able to help your clients with?
Aspects of renal social work role
We support patients with many and varied difficulties/ queries/issues/concerns including housing issues, help with accessing local authority services, form filling and in many cases, benefit advice and support, including representation at tribunals where possible, involvement in safeguarding and child protection cases, referring for other appropriate support, signposting and working with external agencies. Providing emotional support to patients and care givers, help accessing charitable grants supporting individuals to meet their needs, for various things, employment and education support and much more.
Do you liaise with a person’s clinical team?
Yes. We are all based within the renal multi-disciplinary team and liaise extensively with all appropriate members of the team, advocating fully for the patient.
Do you link in with the Kidney Patients’ Associations?
Yes. KPAs form a vital role in helping us support kidney patients, however, many renal units do not currently have a KPA.
Does every renal unit have a specialist social worker?
Sadly no. Some units may not have a renal social worker but benefit from Support Workers, and/or a qualified Counsellor and/or a clinical consultant psychologist. However, there are still many renal units that do not have this specialist psychosocial support at all. The specialist Renal Social Work Group (RSWG) is working on mapping where the psychosocial support is around the UK.
If my renal unit doesn’t have a specialist social worker, what can I do?
Liaise with the senior management, KPA’s and other national kidney charities to identify funding. Liaise with national RSWG and other renal units who have RSW for assistance with job descriptions, etc. Identify needs and build a good case for establishing a RSW service.
I know you are a member of the Renal Social Work Group. Can you describe the groups aims and how do they influence policy?
The group aims to support members UK wide who work in renal services. Associate members include social work assistants, youth workers, community care navigators and family support workers. The group meets four times a year around the country to share skills, experience, information, support and training. It provides peer support to members throughout the year, with the opportunity to ask the group questions and seek support over the varied and complex issues we support our kidney patients with. The group also enables members to access external training opportunities and national and international conferences. Members are located throughout the UK.
The RSW group plays an active role in highlighting the psychosocial difficulties renal patients face through attendance at various prominent national conferences including NKF, UKKA and localised events. We are a small active group, and many members sit on various national and local committees that are at the heart of lobbying and influencing key policies.
Jayne Davis
Living with Dialysis for more than 45 years
This is Phil Raymant’s story of his experience of over 45 years on dialysis in his own words.
I became unwell with headaches, weight loss, feeling cold and generally fatigued before being dragged by my wife of three years, June, to see my GP. My GP sent me for tests at the local hospital and it was discovered I had renal failure. I was 25 years old. We were taken aback but followed the advice of the doctors to have surgery on my left arm to create a fistula. It was all very new and slightly overwhelming!
Things then moved on and in February 1979 I had surgery to create my fistula. I must just put in a word for the great surgeon who did such a marvellous job because my original fistula is still being used today! This was done at Whitechapel Hospital, as it was then known. Regular outpatient visits were required, a diet that was, erm, ghastly! Just some of the delights were 1 oz of meat, cream in your tea – no milk allowed, and tinned bread which is impossible to describe!
In April 1979, it was decided I should start dialysis. It was then that I was introduced to the lovely Sisters of Hanbury Ward, which at that time was a 12 bedded ward, where each patient had a sister looking after and training them. On my second visit I was encouraged to needle myself. I must admit that the idea scared me very much! But after a time of staring at my arm, I managed to achieve it. The idea of needling oneself certainly goes a long way in helping to be in charge of the situation rather than feeling helpless, waiting for others
The time on dialysis has certainly changed for the better. In 1979 we dialysed twice a week for seven hours, but that changed to nine-hour sessions twice a week and then it changed to five-hour sessions three times a week. Of course, the machines have improved, I started with a Dylade 2, then a Gambro AK10 which you could stack different machines to help with different problems.
Phil on dialysis many years ago
When that got to a six stack, it was decided to use the Gambro AK95 which we used for quite a long time. At the moment we are using the AK 98.
The team of sisters who were under the supervision of dear Nester were wonderful in training (with homework) and caring for you. Also, the technicians who trained us all – they are the mechanics of the machine, although it must be said that with the D2 all that was needed was a big screwdriver and a hammer to resolve most problems!
We came home to a huge 16’ x 10’ Portakabin which was kitted out like a mini dialysis unit with a huge sink to wash down the kiil, a large piece of equipment with three flat beds that had to be scrubbed then put together using 'cling film' for the membrane. Then there was a blood pump which sat on top of the machine and a ‘mouse’ that sat on the floor… a telephone nearby... talking with the techs and doing our best to keep it going until one arrived, sometimes very late! They were a great team... Chic, Mike, Bruce, Rob and others led by Bob Smitherman. Ken and Iris who worked in the cleansing dept… We saw many changes from kiil to kidneys of all shapes and sizes finally to the pint size machine we have today.
From stack machine to the touch screen which we use today…formaldehyde and bleach to citric acid and bleach. Various home dialysis nurses who have visited our home to check bloods and see that all is well. We have seen various units spring up in Basildon, Southend, Broomfield, Chelmsford; and Queens in Romford, which is the satellite unit for The Royal London Hospital...We can go to Queens Hospital rather than the long journey into The Royal London for check-ups.
I worked in recording studios where I met dear June before becoming ill and having to stop work for a while. After learning to dialyse at home I went to the London College of Furniture to train as a piano tuner. I have always loved a job connected to the music industry.
Over the years June has been an amazing nurse, carer, housekeeper and psychiatrist, providing a great deal of hands-on support throughout our years together. In fact, it’s support like this that makes dialysing at home for a long time possible.
We have managed to have our annual holidays at Poole in Dorset at the Unit’s holiday home which was kitted out with a dialysis machine and when that wore out we went to a clinic in Christchurch. One year we hired a caravanette and toured Norfolk for three days, returning home to dialyse and then touring Devon for the rest of the week. It was tiring but enjoyable. We appreciate that there are many more opportunities now for dialysing away from home. It really is wonderful to enjoy a change of pace and scenery to recharge our batteries.
So as we complete our 46th year… we say thank you to all the doctors we saw, most of them and the nurses and staff who do a very good job of providing care for all the kidney patients and helping them to make the best of their treatment. Although I am unable to do as much physically now as I would like, I am coping with advanced glaucoma in both eyes and arthritis in my hands which makes things a bit difficult. We know however that we can email, phone, review results online and get in touch quickly and receive advice.
So we are grateful for the Health Service who freely provide this service to keep us kidney patients alive and make life bearable without extra worry, when it is already quite a traumatic and life changing experience!! But hey, in just over four years it will be our 50th wedding anniversary which really will be something to celebrate.
Phil and June at home in 2024
Become a Member of the NKF
In 2024, the NKF Helpline experienced its busiest year in 25 years, providing essential support to over 5,000 patients, families and healthcare professionals. Our ever-expanding library of 200 trusted leaflets empowered countless individuals, with more than 65,000 copies distributed free of charge to patients, renal units and GP practices. This milestone highlights the growing demand for our vital services — but behind every call answered and leaflet sent, there is a rising cost to keep this lifeline going.
Why your donation matters...
Our Helpline is a lifeline.
Help us answer more calls for support
Our Helpline advisors and peers ensure that callers receive the guidance and support they need – no waiting list, just an instant, friendly, immediate experienced ear at the other end of the phone. With your donation, you allow the lifeline to continue and contribute to a service that offers hope and assistance to countless individuals during their most challenging times.
Your knowledge is power.
Help us to empower patients to be in control of their health choices
Your donation allows the NKF to continue providing an extensive library of educational leaflets written by healthcare professionals, enabling patients, carers and renal units to access vital information at no cost.
Let’s shape futures together.
Help us to raise big kidney challenges and voice real solutions in Parliament
Your donation is crucial because it enables us to continue our vital work. Thanks to generous contributions, the NKF has been able to fund a home dialysis campaign that put forward seven recommendations and requested correspondence from Devolved Governments and Clinical Directors of Renal Services in the UK to respond with their progress and good practice, to improve the quality of life for many patients. By donating, you empower the NKF to push for policies that ensure such innovations reach everyone in need.
Together we’re stronger. Help us recognise and support local voices
As a member, your generous donation plays a significant role in sustaining the NKF’s efforts to continue support to the 50 Kidney Patient Associations (KPAs) across the UK. By joining as a member you help the NKF to provide essential resources to KPAs and collaborate within the renal community.
“I was told I was diagnosed with chronic kidney disease but had no information provided to me initially, thank you to the NKF for being there when I wanted to talk about it. The Helpline advisors were so helpful at the end of the phone to put my mind immediately to rest. We discussed my kidney levels, what I can do to help myself and so much more. The offer to send a free pack in the post was amazing, thank you to everyone involved at the NKF.” - JB
BECOME A MEMBER TODAY
For less than the price of a coffee, you can help sustain this vital service by becoming an NKF member from £3 per month.
In addition to receiving the Kidney Life magazine and In Touch newsletter, as a member, you'll enjoy exclusive benefits like:
• Members only discount code on the NKF Shop
• Reduced day delegate rate for the NKF Annual Event
• Early access to the latest information and sales
• Invitation to special events
Join the NKF as a Member
Together with your regular gift, we can bring hope and support to those affected by kidney disease across the UK.
www.kidney.org.uk/member
Scan me to join today
WE NEED YOUR SUPPORT MORE THAN
Your membership helps us to make a difference to others!
The National Kidney Federation (NKF) relies entirely on your aid to continue our vital work supporting kidney patients and their families. By becoming a member you will help us support every kidney patient in the UK and it couldn't be easier to do so:
WAYS
NKF Fundraising
The challenge of fundraising has never been felt so keenly and as a charity we rely on the support and backing of our supporters to keep going so that we can provide services for people living with renal disease. Here’s an update on some of our fundraising activities planned for this year.
NKF PRIZE DRAW
In this edition of Kidney Life, you may notice a change - there are no Spring prize draw ticket books included. This year, we’ve taken the decision to go digital with the prize draw to help save costs on printing, banking and postage which have increased significantly. Going digital also helps us to be kinder to the environment.
Your support remains as vital as ever, and we still want you to join in the Spring draw which features fantastic prizes, including a £1,000 first prize!
Taking part is simple and completely online. Visit www.kidney.org.uk/shop/nkf-spring-draw-2025 to get your tickets today.
Prize draw winners will be picked on Wednesday 14th May.
Thank you for your continued support and good luck!
FUNDRAISING EVENTS IN 2025
At the NKF, we offer a wide range of exciting events for everyone to get involved in – or to encourage someone else to get involved in!
If running is your passion, we have our 5k and 10k races, half marathons, and full marathons happening across the UK and even in destinations worldwide.
Prefer something at a slower pace? You could join us for unforgettable walking treks, including Ben Nevis, Hadrian’s Wall, or even the Great Wall of China.
Feeling adventurous? Why not take the leap with one of our thrilling skydives, parachuting from 13,000 feet at various airfields across the UK?
We’d love you to join one of these incredible events to help support kidney patients. If you’re unable to participate yourself, perhaps a friend or family member could take part on your behalf and help make a difference.
For more information, visit: www.kidney.org.uk/Events
Thank you for your support!
Bookdialysis:
Bookdialysis.com opens up a world of possibilities for those who require regular treatments to maintain their health. No longer confined to their local dialysis center, travellers can now plan vacations, business trips, and adventures without worrying about compromising their health care needs. Through a simple 3 steps process, travellers can find clinics at their destination, see real availability of slots and book their treatments, everything for free.
With a network of more than 820 clinics in 50 countries and 370 cities, bookdialysis has transformed the way individuals with kidney disease approach travel, offering newfound freedom, flexibility, and opportunities for exploration. With direct access to dialysis clinics, and a supportive community, CKD travellers can now embark on adventures with confidence, knowing that their health needs will be met wherever their travels may take them. So, whether it's a cross-country road trip, an exotic international getaway, or a weekend retreat in the mountains, bookdialysis enables individuals to embrace the world without boundaries. Find out more at www.bookdialysis.com
PUZZLES
If you’ve got a few minutes to spare, put your feet up and have a go at our puzzle!
WORDSEARCH
For this issue our wordsearch is a bit different. Based on events around the country and high-profile anniversaries in 2025 you will need to work out what the words are and then find them. Shouldn’t be too hard – but good luck and watch out as some words may be backwards...
W O M B O R V Y A B E A N
T D R O F D A R B R N K N
O S S J T Q U E O C N C O R T N A T I O N S H I U I
S E R N I N E V O B N S T
W S E F
I T O S U T H P A D Y E N
B L O T L U T S V R Y M E
E R D E T S W A J A T Y G
R C O N S T A B L E G L R D L R O W G R E A T E S T
IN 2025…
1. Royal Observatory celebrates its 350th anniversary (10 letters)
2. this year’s City of Culture (8 letters)
3. Scary film’s 50th anniversary – der de! (4 letters)
4. Six ______________ Rugby (7 letter)
5. __________ / ______________ Marking 80 years since the end of WWII (2 words, not next to each other - 8 letters and 10 letters)
6. Harry’s games The ______________ Games (8 letters)
7. 7th Jurassic dinosaur movie title ____/____________ (2 words – 5 letters and 7 letters)
8. Headlining Glastonbury _____/______________ (3 letters and 7 letters)
9. Tate Britain’s 250th anniversary of the births of two of our most loved British artists. Surnames only __________ and ______________ (6 letters and 9 letters)
10. The Way – 60th birthday of this great place to walk! (7 letters)
11. 70th anniversary of Disney favourite and the ___________ (4 letters and 5 letters)
12. online market place celebrates its 30th birthday (4 letters)
13. Famous, loved and studied lady novelist’s 250th birthday anniversary ______/___________ (4 letters and 6 letters) G R E E N
Save the Date – World Kidney Day
World Kidney Day 2025 is fast approaching, taking place on Thursday, 13 March 2025.
This annual event offers an opportunity for the kidney community across the UK to unite in celebrating kidney health, increasing awareness, and ensuring patients feel included and supported.
The NKF is once again collaborating with the Kidney Charities Together Group. The joint collaboration will drive a nationwide awareness campaign alongside other kidney charities such as the PKD Charity, Kidney Care UK, Kidney Research UK, Kidney Wales, Popham Kidney Fund, and the UK Kidney Association.
Keep your eyes peeled for our awareness campaign on World Kidney Day UK social media channels and website:
