NKF Impact Report 2023

Welcome to the National Kidney Federation Impact Report for 2023

The National Kidney Federation (NKF) has been busy during the past year and has achieved many great things as you will see throughout this report.

2023 was the year that we celebrated our 45th anniversary since the charity began back in 1978, when the NKF was founded by a handful of Kidney Patient Associations (KPAs), who thought there needed to be a national charity to fight for the renal cause throughout the UK. The NKF has changed vastly over the last 45 years and we have a timeline on our website, please have a read of it, it truly has been a very big journey: www.kidney.org.uk/our-timeline-of-history.

We held our KPA Day and Annual Patients’ events face-to-face for the first time since 2019. We had lots of attendees and got wonderful feedback about how good it was to see these events return face to face and how it was great to see old and meet new friends.

Our true little superhero, Shaemus had a tough year and you can read all about this on pages eight and nine. We can also tell you the wonderful news that he had a kidney transplant in January 2024 and he is doing well.

Our helpline continues to go from strength to strength with supporting patients on their journey, from advice to peer support, it is all provided by our wonderful advisors Stephen and Linda. This vital service that the NKF provides is a valuable source of support for any patient or carer, as Stephen and Linda have lived experience of being a kidney patient and carer.

I am most grateful to my staff team, we are only a small team, but we are highly effective in providing care and support to all of the thousands of patients that reach out to us each year. We work in the background for every single patient in the UK with our campaigning work, ensuring we challenge the NHS and Government to get the best possible care for all kidney patients.

The NKF Executive Committee is instrumental in moving the charity forward and has great determination to see our strategy come to life in the work we do day to day.

We are thankful to our industry partners, trust funders and all of our individual supporters, because, without their help and support, we would not be able to continue the work we do.

If you are in a position to make a donation, no matter the size, we promise we will put it to very good use for the benefit of kidney patients. You can donate through this link: www.kidney.org.uk/donate/donate

We look forward to supporting you through the next year, wishing you all a wonderful 2024.

Best wishes

Andrea Brown NKF Chief Executive

Understanding the purpose behind why we do what we do

Below are statistics from 22/23

• 11 in 200 adults in the UK are at risk of CKD stages 3 to 5.

• Over 30,000 people are on dialysis in the UK.

• 1 in 10 people worldwide have kidney disease.

• 1 in 10 people with end stage kidney failure have an inherited kidney disease.

• 20 people are diagnosed with kidney failure every day.

• Around 3.5 million people in the UK have kidney disease, 1.2 million people in the UK don’t know they have it.

• People from black or South Asian backgrounds are more likely to develop kidney failure.

• The employment rate for dialysis patients is just 26%.

• 67% of kidney patients experience symptoms of depression.

• There are over 5,000 people waiting for a kidney transplant.

• 902 people received a kidney from a living donor in 2023.

• 71.6% of all organ transplants included a kidney in 2023 (68.2% of all transplants were kidney alone transplants).

• Kidney transplants from living donors increased by 1% to 923, while kidney transplants from deceased donors increased by 4% to 2,349 in 2022/23.

• 127 paediatric (<18 years) recipients of a kidney only transplant performed in the UK in 2022/23.

• There were 83 non-directed altruistic living kidney donors, leading to 119 patients benefiting from a living donor transplant in 2022/23.

• 112 kidney transplants were made possible by the paired living kidney donation programme (28 two-way and 42 three-way exchanges) in 2022/23.

How we work

The NKF has a vision to support all kidney patients and their families in the UK and strive for excellent quality of care across the UK. We know it won’t be easy getting there but we believe with your help we can work towards this every day to make it happen.

Throughout the UK we help thousands of people every year, providing patient support, and have our own Freephone Helpline dedicated to patients, families, renal units and health care professionals. The NKF Helpline is also the UK’s largest provider of kidney-related medical information leaflets written and reviewed by renal professionals and are mailed out free of charge.

The NKF free to call Helpline is available Monday to Thursday 08:30am - 5:00pm and Friday 8.30am – 12.30pm on 0800 169 09 36 or email helpline@kidney.org.uk.

Making an impact in 2023

We lobby and work with an All-Party Parliamentary Group to advocate for patients’ rights, their needs and wishes. At the NKF, we do whatever it takes to support individuals living with kidney disease and to support their loved ones.

What impact we aim to achieve

As part of the NKF’s five-year strategic plan, we want to play a part in providing a better future for those affected by kidney disease.

• We want to support all kidney patients and their families with the expert knowledge of the patient voice – our charity is run by kidney patients for kidney patients

• We believe that together we are stronger when we work as a team

• We continuously strive to be responsive and supportive to the changing needs of all patients and families by being there for them when they need us most

• We aim to be inclusive within our approach to promote and celebrate the diversity of all people

By 2026 we will have…

1 Strengthened our network

• Strengthened the levels of support to the wider network of Kidney Patient Associations (KPAs) and other support groups

• Increased our engagement with professional bodies, commissioning groups and other kidney charities

• Built on our work with the All-Party Parliamentary Kidney Group (APPKG)

• Increased our engagement with other renal and kidney related charities, departments of health and NHS Blood and Transplant

2 Increased our national profile and influence

• Become a prominent support charity for all kidney patients and their families in the UK

• Have a strong independent national voice

• Strengthened our links to all Kidney Patient Associations and other support groups

• Campaigned for change when it was necessary

3 Continued to develop high quality support

• With a first-class relevant helpline

• Provided comprehensive patient information in an accessible format

• Influenced policy makers to provide excellent quality of care across the UK

• Developed and expanded the provision of support for all people affected by kidney disease

4 Improved equality, diversity and inclusion

• Ensured that support is available for everyone affected by kidney disease regardless of age, ethnicity, religion, gender, sexuality, socio economic background and disability

• Strengthened our engagement with underrepresented community groups

• Increased our engagement with patients of all ages

• Strengthened our relationship with the National BAME Transplant Alliance (NBTA)

5 A stronger charity to better champion the need of our community

• Delivered a robust fundraising, communications and marketing strategy to support our work across the UK

• Ensured the charity is governed in line with charity commission good practice guidelines

• Reviewed the charities resources so that there is sufficient capacity to grow the organisation

• Demonstrated effectively the impact of the work the charity does

In 2023 the National Kidney Federation:

Welcomed our new NKF Chairman, David Coyle.

Connected with over 5,000 patients, families, carers and healthcare professionals through helpline calls, email queries, the live web chat on the NKF website, plus posted letters.

Celebrated the charity’s 45th anniversary. The NKF are proud to continue their work, 45 years on since the charity was formed in 1978, initially known as the National Federation of Kidney Patients Associations.

Hosted a Kidney Patient Association (KPA) Day, the first face to face NKF event since the COVID-19 pandemic.

Promoted and developed the work of the Helpline sending Helpline resources to KPAs including bespoke leaflets with KPA logos, promoting the Helpline service and resources to paediatric units and much more.

Provided ongoing support to the online wellbeing platform, Kidney Beam, helping patients to get active and feel good, designed for renal patients who may find everyday movements difficult. The NKF are proud to support the platform and are delighted that it is now a free service to everyone in England thanks to the NKF’s coordination and KPA’s support.

Signed a two year sponsorship deal to support England Transplant Football Club.

Hosted another successful Parliamentary Reception this time pre World Kidney Day, amongst other APPKG meetings.

Partnered with ITN Business to produce ‘Understanding Kidney Health’, a two part news style programme.

Attended UK Kidney Week in Wales and hosted a seminar session about the NKF’s national Home Dialysis Patient Support Service.

Continued to expand the NKF Home Dialysis Peer Support Service across the UK.

What we achieved in 2023…

Collaborated with the Kidney Charities Together Group as part of World Kidney Day with an annual campaign to raise awareness of kidney disease.

Drafted a Patient Group Submission to help the Scottish Medicines Consortium (SMC) make a decision on whether they can make a new medicine – Voclosporin (Lupkynis) for use in combination with Mycophenolate Mofetil for the treatment of adult patients with active class III, IV or V (including mixed class III/V and IV/V Lupus Nephritis (LN).

Worked with more diverse ethnic minority groups and organised an Organ Donation Summit to mark three years since the organ donation system changed.

Continued to work with NHSBT to educate about opt out and updated the organ donation and transplantation information on the NKF website.

Conducted an online survey to understand the national picture patients facing difficulties in accessing Dialysis Away from Base (DAFB) when travelling for holidays or for other reasons.

Continued its success with the NKF Webinar Series with more registrants than ever before.

Hosted the first face to face NKF Annual Patients’ Event, 3 years since the pandemic, which took place at East Midlands, Radisson Blu Hotel.

Organised annual fundraising challenges including ‘Best Foot Forward’ and the ‘Choctober challenge’, which were a fantastic success thanks to all those that got involved.

Our Future Focus

The NKF will continue fulfilling the objectives of the five-year plan, including establishing new support groups in areas without Kidney Patient Associations. As Secretariat, we aim to keep amplifying the voices of patients through the APPKG after the general election and provide more support for younger patients.

There is still much work to be done and with your support, we can continue to expand our patient support services and campaign for better futures for kidney patients.

NKF Helpline goes from Strength to Strength

The NKF Helpline was busier than ever in 2023, connecting with over 5,000 patients, families, carers and healthcare professionals through helpline calls, email queries, the live web chat on the NKF website, plus posted letters!

In the past 12 months Helpline queries combined have increased overall by 6.7% compared to 2022.

Additionally the Helpline team have sent out:

• 27,000 patient information leaflets to renal units, hospitals and patients

• 2,000 patient support packs

• 1,000 patient information folders including; dietary, transplants, CKD stage 3, exercise and the very popular dialysis information packs

• 3,000 emergency patient cards

NKF Home Dialysis Peer Support Service Two Years On

The NKF’s Home Dialysis Peer Support Service has been going strong for two years now.

The NKF National Peer Support service is recognised as a designated provision by Diaverum and Fresenius Medical Care.

Our 21 NKF Home Dialysis Peer Supporters cover all of the UK.

The peer supporters cover a wide age range between the ages of 25 to 75 years, 10 with HHD experience, 4 with PD experience, 5 caring for someone on home dialysis and 2 out of 21 have done HHD & PD.

One key figure in promoting the Home Dialysis Peer Support Service has been NKF’s Helpline Advisor & Peer Support Coordinator, Stephen Emmerson, who has tirelessly promoted the service to patients, families, supporters and industry partners across the country. Stephen has attended seminars as a guest speaker to raise awareness of the NKF Helpline and the Peer Support Service, as well as drawing on his own personal experiences with kidney disease.

Thanks to Stephen’s efforts, and the ongoing support of Fresenius and Diaverum, the Home Dialysis Peer Support Service is better positioned than ever to help kidney patients manage their condition in the comfort of their own home.

The NKF also visited one of Diaverum’s dialysis clinics in Darlington. An informative morning exploring how the NKF and Diaverum can further support and work closely together to provide patients with choice.

Whether you are a patient who could benefit from this service or a healthcare professional looking to support your patients, we encourage you to learn more about what this free national service has to offer by visiting the NKF Home Dialysis Peer Support Service page: www.kidney.org.uk/peer-support

Thank you to Baxter Healthcare Ltd for a financial contribution to support this service.

Pictured: Stephen Emmerson, NKF Helpline Advisor and Peer Support Coordinator

Pictured: Dale Henderson Renal Nurse, Lisa Jordan Managing Director of Diaverum UK, Andrea Brown NKF Chief Executive, Sharney Warren NKF Communications and Marketing Officer

Patient Story: Shaemus Flood

2023 where to start! This has by far been the toughest year for us all yet.

In January 2023, myself and Kieran (Shaemus’ Dad) were both tested to donate a kidney to Shaemus and our results came back that we are both the same blood and tissue type. Kieran is going ahead and continuing with his tests.

Later in the month of January, Shaemus became very unwell with peritonitis, one of our worst fears, as we have been so careful using the one catheter at home every night for 4 years. Looking back now, we definitely took peritoneal dialysis for granted with all the free time together we had as a family.

After a few tests on Shaemus, the results from the lab came back and it was a bacteria that could be treated with antibiotics, so we trained to do his dialysis bags so he could go home. When the antibiotics finished shortly after, the peritonitis came back again after 1 to 2 weeks, although it was the same bacteria, myself and Kieran and the consultant decided it was best to get Shaemus’ catheter out.

We were devastated as it was the end of an era, we were no longer going to do home dialysis and moved on to haemodialysis in centre 7 days a week.

In March, Shaemus started his haemodialysis, unfortunately again he started getting intense tummy pains, scrunching his knees up to his chest screaming. Shaemus had blood tests and it showed he now had pancreatitis! We were now dealing with something we didn’t even expect to happen. There is not much treatment other than pain relief and rest. He started a small dose of a continuous run of Fentanyl and tried to ride it out. Showing signs of progress, and weaned off the pain relief, we were then discharged.

Again, not long after this, a second episode of pancreatitis came back with a vengeance. We are heartbroken that he’s just not catching a break and we feel helpless.

Shaemus had a CT scan and more bloods were taken, this time we were told his pancreas was showing signs of necrosis. Our world just crumbled. He was back on continuous pain relief and went to ICU for a continuous dialysis filtration for ten days to hydrate the pancreas whilst dialysing the fluid straight back out.

The doctors changed his mickey button to a jej to rest his tummy from any fatty foods. He was starting milk feeds via jej at 5ml an hour. I became obsessed with his amylase levels and I get so anxious and worried when he says he’s got tummy ache!

He needed three blood transfusions over his recovery period. Slowly but surely, he started to feel better again although his pancreas will now never be the same. After six months his jej was changed back to a mickey button.

After spending so much time at hospital and attending the renal unit every day, we wanted to do something to show recognition to others about the National Kidney Federation charity and kidney disease. Myself and Shaemus have worked together with the National Kidney Federation and created a new T-shirt to wear on the unit, they are also available to be purchased via their online shop to raise vital funds for their patient support services. We are very proud of this. With lots of help and support from our amazing family and friends we have also raised £1,500 for the Ronald McDonald House in Alder Hey, where we have stayed so many times and £2,000 for the renal unit at Alder Hey, to go towards new machines to help treat young children just like Shaemus who depend on this life saving treatment.

Meanwhile Kieran’s tests were going great, and as he passed everything, we were finally given a date for Shaemus’ transplant on 19th October 2023. Something we have all been waiting for so long.

Shaemus wanted to include in our update: “Daddy is my real superhero and I will forever be grateful for what he is doing for me.”

Kieran made the decision to suspend his work until after the transplant so he could spend quality time with Shaemus and the rest of the family. I am so grateful for this as we do travel every week to the hospital and I couldn’t do it by myself. It is so exhausting and mentally draining. We are especially thankful for Shaemus’ Nana who takes him to dialysis when she can to let us recharge.

This year has definitely been the most challenging for us all as a family, we don’t get much time all together any more.

Shaemus was kindly granted a wish from When You Wish Upon A Star. We went on a little break away together to a Haven caravan park in Blackpool. Although he was well enough to go, we had to travel every morning to Liverpool at 6am for treatment, but we made it as special as possible for all of our children to enjoy. Shaemus loves helping the nurses out, he is great at finding his own blood pressure and loves putting labels on his samples. By the way, he is still waiting for his wage!

The summer weather was extremely tough for Shaemus this year. He couldn’t enjoy swimming or paddling pools or even cool baths because of his central line. His water restriction has also been reduced to 200ml a day which is a massive struggle. The side effects from haemodialysis are a real struggle for him too with itching all over his body causing so much bleeding and scaring. He is losing his hair and has lost lots of weight from not being able to maintain his calorie intake. He’s struggling with high blood pressures and keeping to dry weight. He gets lots of tummy cramps and has numerous times collapsed towards the end of treatment with blood pressures dropping too low.

On 18th October, we headed to Manchester for our overnight stay ready for the transplant.

Unfortunately, Shaemus started with a high temperature and later tested positive for RSV and the operation was cancelled.

We are now back at Alder Hey every day for dialysis until we get another date. It obviously wasn’t our time, but we luckily get to spend more time with all the staff on the renal unit who make our sessions so much fun. Their relationship with us is absolutely priceless. And I think we may have played ‘Guess Who?’ about 1,242 million times whilst on dialysis!”

Dialysis away from base

The NKF have found that some patients who require dialysis treatment are being put off booking holidays due to the lack of options and information about receiving their lifesaving dialysis treatment away from their home. An online survey was conducted to understand the national picture having previously heard anecdotal evidence that patients have faced difficulties in accessing Dialysis Away from Base (DAFB) when travelling for holidays or other reasons.

Around 68% of respondents to the charity’s survey felt being on dialysis held them back from booking a holiday. Reasons given for this included lack of information about how the booking system works, difficulty in securing dialysis slots in their chosen or any destination, and units not confirming their dialysis slots until the last minute leaving them unable to confirm holiday plans.

Around 68% of respondents to the charity’s survey felt being on dialysis held them back from booking a holiday.

Even amongst those who indicated they were able to book holiday dialysis, some respondents were unable to book nearby, so had to travel a significant distance from where they were staying. Others said that it was easier to book holiday dialysis abroad than it was to travel within the UK. The research the NKF undertook presented that there are logistical difficulties of getting confirmed dialysis slots for booking a holiday or attending family events and is very challenging for patients.

The research also found that patients particularly struggled to access holiday dialysis in areas of England such as Cornwall, Devon and London, as well as parts of Scotland and Wales.

More of our findings can be accessed via our website: www.kidney.org.uk/nkfsurveys

Supporting patients through COVID-19

Sadly, COVID-19 has remained to be a main constant in our daily life. Despite this, the NKF amongst the Kidney Charities Together (KCT) (Kidney Research UK, Kidney Care UK, PKD Charity, Kidney Wales and the UK Kidney Association) have continued to evolve and adapt ways of working together as we learn to live alongside the virus.

It has taken much resilience, but we are proud to say that all the kidney charities working together has helped to provide united messaging and guidance to patients and their families.

Patients and their families are at the heart of all the decision making that we do, KCT meetings continued, as well as UK Kidney Association and COVID Vaccine Efficacy meetings to discuss what we can do to help share

vital information on government guidance, vaccinations, treatments, living with COVID-19 and much more.

The main goal of the meetings is to create clear guidance for renal patients. We have also been there every step of the way to support the NHS, spreading their messages far and wide to our community.

Together the KCT Group remain with their stance to provide updates to the renal community and to help to provide guidance in any way that we can.

The NKF website is relied upon by many for the latest information on COVID-19: www.kidney.org.uk/News/ coronavirus-latest-informationand-advice

Increasing Home Dialysis in the Context of COVID-19 in

the UK – Two Years On

In March 2023, a year after the last NKF Home Dialysis Report, the NKF published the ‘Increasing Home Dialysis in the Context of COVID-19 in the UK – Two Years On’ report.

The purpose of the report was to share outcomes from the campaign in 2022 and to encourage the kidney community to take further action. The request to Clinical Directors of Renal Services in the UK resulted in responses from 31 units.

A summary of the centre-by-centre responses are included within the Two Years On report and includes many examples of good practices that the NKF hopes will be helpful to everyone involved and interested in improving the provision of home dialysis in the UK.

In particular, the NKF encourages the Regional Networks set up by NHS England to use these examples in their work.

Below are some of the results featured within the ‘Two Years on’ report:

We have established parallel KPA Networks in each region, and the NKF encourages all KPA Chairs to consider the report and support their local hospitals in their plans to increase the provision of home dialysis.

We are most grateful to the UK Renal Registry for producing analysis of the latest data shown in the report, including data centre by centre.

To read the report visit: www.kidney.org.uk/homedialysis-campaign#Increasing_ Home_Dialysis_In_The_ Context_of_Covid_19_in_the_ UK_Two_Years_On The majority of payments are

The majority of people are reimbursed quarterly

majority of payments are automatically paid into a respondent’s bank

Prioritising Action: Raising Awareness among Parliamentarians and the All-Party Parliamentary Kidney Group (APPKG)

Annual General Meeting

The first APPKG meeting was held in January 2023, the Annual General Meeting was chaired by Laura Farris MP. The meeting raised topics on organ donation and transplantation as well as the future of renal improvements in the health and care services. The APPKG was joined by National Medical Director of NHS England and Professor of Renal Medicine at University College London, Professor Stephen Powis, and Director of Organ Donation and Transplantation, Anthony Clarkson.

Parliamentary Reception

The next APPKG meeting was held in March 2023, hosted by the NKF in collaboration with AstraZeneca*, Fresenius Medical Care and Healthy.io. The event was arranged as a reception in Parliament, a day before World Kidney Day, to emphasise the importance of early detection of chronic kidney disease with MPs.

On the day of the Parliamentary Reception, there were urine tests available to all eligible parliamentarians with medical professionals on hand, blood pressure tests to raise awareness of good kidney health, and three different types of dialysis machines which were demonstrated during the afternoon.

The event was a great success showcasing what the NKF can provide to improve prevention, diagnosis and treatment of kidney disease.

Guest speakers from the event included: Dr Raj Thakkar, discussing chronic kidney disease and early detection, Funmi Lawal, a kidney patient with renal failure which was caused by high blood pressure during pregnancy, Katie Vinen, Clinical Vice President of the UK Kidney Association (UKKA) and Kidney Doctor Clare Morlidge, Co-President of UK Kidney Association and Renal Pharmacist, who spoke on behalf of the UKKA.

An ITN production programme launch on Understanding Kidney Health in collaboration with the NKF was also featured at the reception. (See more about the ITN programme on page 14.

The reception was concluded by Laura Farris MP summarising the three policy asks:

Early detection – The NHS should introduce incentives to help drive earlier detection and diagnosis of CKD in primary care.

CKD management and treatment – Clinical teams should be provided with the support and resources necessary to implement best practice in CKD treatment.

Home-based dialysis access – Patients should be offered a choice of dialysis at home, and appropriate policy measures should be put in place to support these patients.

Also launched at the Parliamentary Reception event was the NKF report, ‘Home Dialysis in the Context of COVID-19 in the UK – Two years on’, to showcase the latest home dialysis data findings and responses from devolved governments and clinical directors.

Over 35 MPs and 75 Peers attended the event in Parliament and met representatives from around the country.

Please note: AstraZeneca provided a sponsorship grant towards this independent programme.

Supporting Mental Health for Kidney Patients

The NKF joined the All-Party Parliamentary Kidney Group (APPKG) Meeting on supporting mental health for kidney patients at Portcullis House, London in October. The meeting was once again chaired by Laura Farris MP.

Kidney Research UK and Centre for Mental Health also joined the group to address the mental health challenges of life with kidney disease. Sanjay Mistry joined the meeting to share the mental health view from a patient perspective alongside Emma Coyne, Consultant Clinical Psychologist, who discussed mental health challenges from a clinical perspective.

To view the list of APPKG Officers of the group, please visit: www.kidney.org.uk/all-party-parliamentary-group

Around 1.2 million people in the UK have kidney disease but don’t know it.

For 2023 the Kidney Charities Together group including the NKF, Kidney Research UK, PKD Charity, Kidney Care UK, Kidney Wales and the UK Kidney Association returned to raise awareness for World Kidney Day.

The charities reunited for the annual campaign to spread awareness of kidney disease with this innovative campaign.

The campaign involved a two day immersive pop-up event at Leicester Highcross Shopping Centre, offering visitors the chance to understand the daily challenges of living with kidney disease. The immersive event used UV technology to give visitors an insight into what living with kidney disease is like. Based inside an everyday kitchen, guests were able to interact with ultraviolet LED technology to uncover aspects of life with kidney disease that are typically hidden.

Together, from the campaign we achieved:

• A significant amount of positive attention from Leicester Highcross Shopping Centre with a weekend footfall of 61,538 visitors.

• 3,200 kidney information leaflets were handed out in Leicester.

Age ranges attracted to the World Kidney Day pop-up event in Leicester Highcross Shopping Centre were: 16-24 years 20% 25-39 years 35% 40-58 years 26% 59-74 years 19%

The engagement rate of social media posts per platform doubled compared to last year’s activity.

Understanding Kidney Health with ITN Business

The NKF and ITN Business collaborated on a two-part news style programme, ‘Understanding Kidney Health’, featuring stories of patients and highlighting the vital work being done by the NKF, clinicians and the loved ones who care for them.

Anchored by Sharon Thomas, the programme takes a deep dive into the work being done by organisations and individuals in the industry to raise awareness of kidney disease, and improve detection, treatment and outcomes.

• Pete Revell, Head of Marketing and Fundraising at the National Kidney Federation, explained the vital work being done by the charity, their campaign work and the valuable support that the NKF offers kidney patients and their families.

• Kirit Modi MBE, Honorary President of the National Kidney Federation discussed the impact of COVID-19 on organ donation and transplantation in the UK, how the nation can recover from this, and the barriers to donating organs among ethnic minority communities.

• An exclusive feature, highlighted how CKD can impact young lives and the benefit of home dialysis for both the patient and their family.

• Maddy Warren, a familiar face in the kidney community, who has inspired many people living with kidney disease, spoke to SharonThomas about her journey and how home dialysis has changed her life.

• GSK – explained their work with patient groups to better understand the challenges faced by those living with chronic kidney disease.

• Global medical technology company BD, featured its commitment to kidney patient care with the use of new minimally invasive technology that provides kidney patients with an additional dialysis access option, this is the first significant advancement in dialysis access for more than 50 years.

• Global medical and pharmaceutical device company, B.Braun discussed its patientcentric approach. Through their work with the NHS they are committed to improving the patient experience with the use of plastic cannulas, easing discomfort for kidney patients during access procedures and Haemodialysis.

To watch the programme, ‘Understanding Kidney Health’ visit: www.kidney.org.uk/ understanding-kidney-healthwith-itn

Giving the Gift of Football

The first ever England Transplant Football Club (ETFC) Festival took place in March at St George’s Park, the official home of the England Lions and Lionesses, the festival was a free event for all transplant recipients aged 11-60+ years. The event was an opportunity for transplant players of all ages to come together and try transplant football and walking football for the first time.

The event launched the club’s new ETFC main football kit, sponsored by the NKF. The two-year sponsorship with the NKF will benefit the Men’s and Women’s Senior football teams which enables the club to provide more provisions, and create more opportunities to play transplant football regionally and internationally.

The club consists of volunteers from the transplant community, either organ recipients or transplant medical physicians.

Andrea Brown, NKF Chief Executive, said: “The NKF are proud to work alongside the England Transplant Football Association and to provide a twoyear sponsorship deal, this will enable men and women to be more inclusive within transplant football. The NKF supports over an estimated 3.5 million kidney patients in the UK with their patient support services and we are delighted to be working with the ETFC to continue promoting transplant sport.”

For more information on England Transplant Football Club visit: https://transplantfootball.com/

Kidney Beam

Kidney Beam is a lifestyle management app which has been designed to support, empower and improve the lives of people living with chronic kidney disease.

Dr. Sharlene Greenwood, a Consultant Physiotherapist at King’s College Hospital hosted a presentation at September’s NKF Annual Patients’ Event on the development and research findings of Kidney Beam.

The team have been taking a three pronged approach to getting Kidney Beam into the hands of people living with CKD to achieve widespread dissemination, adoption and maximum patient benefit including the support of various kidney charities and the NHS, clinician promotion and promoting Kidney Beam direct to patients.

Kidney Beam has been very successful with over 3,000 people with kidney disease now signed up to the platform and over 18,000 classes completed, it is scientifically proven to improve mental health, social and physical function, energy and fatigue levels and patient activation.

The NKF are proud to support the online health and wellbeing platform and are delighted that it is now a free service to everyone in the UK thanks to the help and generosity of Kidney Patient Associations and NKF’s support.

www.kidney.org.uk/kidney-beam

Kidney Patient Association Day

In April 2023, the NKF arranged their annual Kidney Patient Association Day for KPA members to attend as part of a networking event to discuss their role of being a part of a Kidney Patient Association – what they are and what they might be and how things may differ between KPA’s.

The main elements of the roles of all KPAs were agreed as:

• Supporting the renal community and giving them a voice locally which can be effective and also have an impact nationally and regionally by making the NKF aware of issues.

• Liaising with the renal unit and influencing some of their activity, building confidence in the system and positively promoting involvement.

• Delivering new patient awareness activities by promoting patient to patient conversations to provide information, education and confidence.

• Fundraising for equipment for renal units and satellite units.

• Recruiting members, including visiting patients on the wards and asking them to join.

Some other activities KPA’s are involved with were discussed and included the following activities:

• Day trips and social events.

• Involvement in the design of a new dialysis unit.

• Subsidised holiday home provision from some KPAs.

• Providing small financial grants for people in need and reimbursement of parking fees.

• Raising awareness of education and research into kidney disease, utilising guest expert speakers.

• Funding a benefits advisor or social worker.

• Out of area patient support.

• Raising awareness in the wider community e.g. through a local charity shop or locally held event.

Discussions followed about fundraising, relationships with clinicians and staff in units and how much they differ, managing membership lists and access to patients in hospitals and on the wards. The discussions were helpful and thought provoking. It highlighted the differences between KPAs which was useful as tactics and approaches were explored and the learning and experiences shared.

The second half of the day involved guest speakers including, David Coyle, NKF Chairman speaking on behalf of Kidney Patient Associations, Daljt Bains, Welfare Rights Officer for renal discussed welfare benefits and Professor Smeeta Sinha, National Clinical Director for Renal Services (NHS England) presented an update of the Renal Services Transformation Programme (RSTP).

Another Kidney Patient Association Day will be put in place for KPA members to attend in 2024.

Kidney Patient Associations: Highlights

The NKF has been at the forefront of providing essential support to Kidney Patient Associations (KPAs) across various regions. Below are some highlights where support has been provided.

1 Financial Support:

The NKF extended financial assistance to Kidney Patient Associations (KPAs) facing financial challenges.

2 Guidance for KPA Formation:

A comprehensive, step-by-step guide was provided to assist in the establishment of KPAs, empowering them to effectively organise and advocate for their members.

3 Promotional Support with Posters: The NKF supplied visually compelling posters to KPAs, aiding them in advertising for new members to join their KPA and expand their reach within their local communities.

4 Regional KPA Network Establishment:

Recognising the importance of local voices, the NKF initiated the Regional KPA Network in eight regions, empowering KPAs to influence and shape renal services within their respective areas.

5 WhatsApp Group for KPA Chairs: The WhatsApp group for KPA Chairs continues to serve as a dynamic platform for open communication, fostering collaboration, troubleshooting, and idea-sharing.

6 Facilitating Kidney Beam Funding:

The NKF played a pivotal role in facilitating funding for Kidney Beam, ensuring its availability to the South East and South West KPAs, which had previously faced resource challenges.

7 Support for New KPAs - Dorset and Kernow: Offering financial support, guidance, and advice during the setup phase, the NKF welcomed Dorset and Kernow as new KPA members, both now integral parts of the NKF.

8 Free NKF Helpline Information Leaflets: We continue to provide NKF Helpline information leaflets free of charge to KPAs and renal units, facilitating easy access to crucial resources.

9 Zoom Account Support for Meetings: KPAs are able to share their best practices by benefitting from the use of the NKF’s paid Zoom account, fostering seamless virtual meetings, and networking opportunities.

10 Monthly NKF In-Touch E-newsletter:

The release of the monthly NKF In Touch e-newsletter ensures ongoing communication and updates for KPAs, keeping them informed and engaged within the renal world.

11 Expansion Efforts in Yorkshire and Lancashire: Actively involved in the establishment of new KPAs, we are currently focusing efforts in Yorkshire and Lancashire, bringing patient advocacy and support to areas without existing representation.

These initiatives collectively demonstrate our commitment to empowering KPAs, enhancing patient advocacy, and fostering collaboration within the renal community.

NKF’s Regional KPA Network –Working Together to Improve Kidney Care

Regional KPA Networks are a collaborative of Kidney Patient Associations, clinical staff and those living personally with kidney conditions, the networks are spread across eight regions of England.

KPAs are invited to attend virtual meetings with their fellow regional KPAs and NHS regional renal networks. They gather and feedback patient experiences within their units, update patients in their regions on the regional renal networks work and trusts work, with others in the patient partnership and engagement group on various initiatives throughout the year.

The purpose of the networks are to ensure there is a patient voice for key areas that need improvement from a patient perspective, and the networks make sure this is fed back to their regional NHS networks.

This includes:

• Listening to patients

• Sharing ideas with patients

• Patient partnership in projects

• Joint solution finding

• Communication with patients and the public

• Patient representation on working groups and conferences

• Promoting equity, diversity and inclusion

On the map are the trusts that are a part of the Regional KPA Networks.

Yorkshire & Humber

NHS Humber & North Yorkshire

NHS South Yorkshire & Bassetlaw

NHS West Yorkshire & Harrogate

North East & North Cumbria

NHS North East & North Cumbria

North West

NHS Cheshire & Merseyside

NHS Greater Manchester Health

NHS Lancashire & South Cumbria

Midlands

NHS Birmingham & Solihull

NHS Coventry & Warwickshire

NHS Derbyshire

NHS Herefordshire & Worcestershire

NHS Leicestershire & Rutland

NHS Lincolnshire

NHS Northamptonshire

NHS Nottingham & Nottinghamshire

NHS Shropshire, Telford, Wrekin

NHS Staffordshire & Stoke on Trent

NHS Black Country & West

Birmingham

East of England

NHS Bedfordshire, Luton and Milton Keynes

NHS Cambridgeshire & Peterborough

NHS Hertfordshire & West Essex

NHS Mid & South Essex

NHS Norfolk & Waveney

NHS Suffolk & North East Essex

South West

NHS Bath & North East Somerset, Swindon & Wiltshire

NHS Bristol, North Somerset & South Gloucestershire

NHS Cornwall & Isle of Scilly

NHS Devon

NHS Gloucestershire

NHS Somerset

South East

NHS Buckinghamshire, Oxfordshire and Berkshire West

NHS Frimley

NHS Hampshire & Isle of Wight

NHS Kent & Medway

NHS Surrey Heartlands

NHS Sussex and East Surrey

London

NHS North Central London

NHS North East London

NHS North West London

NHS South East London

NHS South West London

NHS Surrey Heartlands

NHS Kent & Medway

The NKF returned to the annual UK Kidney Week (UKKW) event at the International Convention Centre, Newport, Wales.

The conference included up-to-date research, latest information lectures, networking with clinicians, academics, scientists, kidney charities and trainees. As usual, the NKF Helpline leaflets were on display at the event for renal units and healthcare professionals to take samples and order in bulk.

The NKF presented jointly a session titled ‘Peer Support in Renal Services’ with Popham Kidney Support, chaired by Nicki Thomas and Eleri Wood. The session was held to look into home therapies peer support services which have been established across the UK and Wales.

John Roberts, a member of the NKF Executive Committee and a member of Hope KPA and Jeff Wood, NKF Peer Supporter discussed the NKF’s National Home Dialysis Patient Support Service and explored how the services work and the benefits it can provide to patients who consider the idea of home dialysis.

In another session, Pete Revell, NKF Head of Marketing and Fundraising, represented the NKF by chairing a talk about anaemia and how it affects kidney patients. The session was titled ‘The burden of symptoms, do we really understand the everyday reality of living with Anaemia and Chronic Kidney Disease?’ Organised and funded by GSK.

Pictured: Pete Revell, NKF Head of Marketing and Fundraising

Pictured: Jeff Wood, NKF Home Dialysis Peer Supporter and Geraint John, Popham Kidney Support’s Peer Support Coordinator

Pictured: Andrea Brown, NKF Chief Executive, Pete Revell, NKF Head of Marketing and Fundraising, Donna Blizard, NKF Office Manager

British Transplant Games 2023

A few weeks after the UK Kidney Week event in Wales, the NKF headed off to Coventry to show their support at the British Transplant Games.

The NKF team met many new and familiar faces and were on hand to provide more knowledge about what the charity has to offer in terms of patient support, including handing out emergency transplant and Helpline cards, transplant wristbands, caps and water bottles.

Continuing our support with the Renal Team at Great Ormond

Children’s Hospital (GOSH)

For the past two years, the NKF are proud to have sponsored and funded the Great Ormond Street Children’s Hospital’s Renal Team t-shirts for the annual British Transplant Games that were held in Leeds in 2022 and Coventry in 2023.

GOSH’s support has helped the NKF’s brand awareness by having the NKF logo on their T-shirts as well as their very own logo.

The NKF have also sponsored and funded a few of GOSH’s social events in 2023 including a ten pin bowling night in London.

K.D.A.R.S for Kids Becomes a Registered Associate Member of the NKF

We are delighted that K.D.A.R.S for Kids (Kidney Disease and Renal Support group) are now a registered associate member of the NKF.

K.D.A.R.S push for renal support for paediatrics.

For more information on K.D.A.R.S for Kids charity and what they do, please visit their Facebook group: www.facebook.com/ groups/750940214926395

The NKF are pleased to be sponsoring a charity event in support of K.D.A.R.S for Kids in 2024.

Organ Donation Opt Out in England – Three Years After

The NKF, National Black, Asian, Mixed Race and Minority Ethnic (BAME) Transplant Alliance (NBTA), and the Jain and Hindu Organ Donation Alliance (JHOD) marked the three-year anniversary of the organ donation opt out law.

All adults in England are considered to have agreed to be an organ donor when they die, unless they have recorded a decision not to donate or are in one of the excluded groups.

A panel of guest speakers presented the latest statistics on organ donation and transplantation and how ethnic minority community groups are taking action to address inequalities in provision.

The summit revealed that there has been limited change in law for several reasons and the consent rate of family members who agree to donate the organs of loved family members after death has gone down from 72% in 2020 to 70% in 2022. This reduction is also present in the consent rates among Asian and Black potential donors.

Six recommendations emerged from the summit:

1 For the Secretary of State for Health and Social Care

To urgently develop and publish the Implementation Plan for the “Honouring the gift of donation: utilising organs for transplant” report, given that its implementation must be cost neutral.

2 For the Mayor of London

To arrange a debate on Organ Donation and Transplantation to mark Organ Donation week in September 2023.

3 For Leaders of London Councils

To promote organ donation within the boroughs during Organ Donation Week in September 2023 and to consider the approach taken by Brent and Harrow Councils.

4 For NHS Blood and Transplant (NHSBT)

To work in partnership with the NKF, NBTA, JHOD and the London Specialist Nurses Team to produce a Guidance Pack to support London boroughs in promoting organ donation locally during Organ Donation Week in September 2023.

5 For NHSBT

To consider the findings of the impact of the change in law to opt out in England presented at the Summit and to implement recommendations of the final report due in Autumn 2023 from the London School of Hygiene and Tropical Medicine.

6 For NKF, NBTA and JHOD

To highlight the outcomes from the Summit and to encourage Kidney Patients Associations, Organ Donation Committees, the London Kidney Network and ethnic minority community groups in London to take on leadership roles to increase awareness about organ donation and help reduce inequality of provision.

Moving forward

The NKF, together with NBTA and JHOD will continue to push the six recommendations detailed.

Organ Donation Week

In September 2023, the NKF shared many incredible and inspiring kidney transplant stories within the kidney community to raise awareness of the importance of organ donation and transplantation.

AJ, Claire, Liam and Christy all shared their kidney transplant stories, including Tracey who has celebrated with her mum every year for the last five years to mark the occasion of becoming a live donor through a Living Donor Kidney Sharing Scheme and her mum receiving the precious gift of life.

The stories were shared on the NKF’s social media platforms; Facebook, Instagram, LinkedIn and Twitter and moved so many people in the process, our supporters flooded in with words of encouragement, kindness and shared their own experiences as well as sharing with friends and family as a reminder of how significant organ donation is and to consider registering on the organ donor register. A big thank you to all that engaged with the inspiring stories during Organ Donation Week.

You can read AJ, Claire, Liam, Tracey and Christy’s stories on the NKF website: www.kidney.org.uk/Blogs/ your-stories

Tracey Thompson

Christy Millar

Claire Rogers Liam Innes-Devlin

AJ Roberts

The NKF’s face-to-face annual patients’ event took place in September 2023, the first event for the NKF since the COVID-19 pandemic stalled all within the world.

It was a memorable achievement celebrating the charity’s 45th Anniversary, as well as celebrating all of the Kidney Patient Associations that have been around for even longer.

The weekend involved an informal social evening and buffet, valuable insights from the world of renal care and life with kidney disease and so much more.

A few takeaways from the event:

• People were very keen to participate and ask questions of all our speakers after their sessions which were informative and useful for everyone.

• Feedback from the day informed us all speakers were rated ‘excellent’ by the majority of all replies.

• This year the NKF had the largest number of exhibitors stands – 18 – which delivered helpful information and education with some great conversations taking place – plus a few freebies!

• Saturday evening’s dinner and dance, complete with magician was enjoyed by everyone who attended.

“After a long wait due to the COVID-19 pandemic, we were very happy to welcome everyone back to our Annual Patients’ Event. We have not been able to hold a face-to-face patient event since 2019, so it was a significant moment for us to all come together again with our amazing kidney community.

We were delighted that the event was well attended and that everyone enjoyed it. A big thank you to all of our attendees, guest speakers, exhibitors, sponsors and the NKF staff who made the weekend a great success.”

NKF Chief Executive, Andrea Brown.

To listen to the audio recordings from the day visit: www.kidney.org.uk/Event/national-kidneyfederation-annual-patients-event-2023

Patient Story: Adam Fisher

My name is Adam Fisher, I am 26 years old and I was born with renal failure. Thankfully, I didn’t need dialysis treatment when I was growing up as my kidney function was okay enough to stay off of it. I always felt like an outsider, from my diet to general daily activities.

I found out that I was going to need a transplant when I was around 10 years old, I was nervous but I was more excited for this part of my journey, I’d have a transplant story that none of my friends could tell. When it came to the transplant, I remember going in the night before the operation and I simply could not wait. I couldn’t wait to try new foods, and more importantly feel healthier.

My transplant was from a live donor, which was my dad, he used to bike ride 5 to 10 miles every day to make sure he was fit enough for the operation. It was December 11th 2007 and I was on the Beach Ward at Evelina in St. Thomas’ Hospital when I had my kidney transplant.

I stayed in the Ronald McDonald Hotel about 3 miles away from the hospital, the heating was always on, and my first ever proper roast dinner was a Christmas meal cooked by American chefs who came to cook for all of the residents. It was so delicious; I can still taste it even now!

After twelve years my dad’s kidney unfortunately failed late in 2016, I found this out after going for my regular blood test, which at this point was once every six months. I went to A&E and my potassium levels were way over the danger zone. I was in a highrisk zone for a cardiac arrest. I then got told the next morning about treatment plans to bring back some stability, I agreed to go on a treatment called Alphaketoglutarate (AKG), the nurses were saying that this could bring the kidney back to life.

After two weeks of the AKG treatment, I got to go home! I was so happy, but sadly I had experienced my first set of seizure’s, I woke up one week later in hospital after being in a coma, I was told that I wouldn’t be able to drive for six months, this made my life seem so bad, I couldn’t go anywhere I wanted anymore.

I started dialysis shortly after this, and I was on it for three years. I had met my fiancée, Alisha, before all of this, and she stuck by my side through it all; from coming to see me in hospital to taking one and a half hours’ worth of public transport to see me at home. After one year of dialysis, I had my second set of seizures, and once again I couldn’t drive for a whole year this time. It was horrible, my poor friends and my fiancée having to use public transport to visit me again. At this point I was very grumpy, and very upset at life, it felt like my life was on pause. I found myself doing the same things over and over again for the next two years.

One night Alisha was staying over at my mums with me, and I got a strange phone call on the 7th November 2019, at 5:30am, it was St. George’s Hospital saying that they had a potential kidney there for me. In pure shock I repeated everything to my mum and Alisha and we all rushed downstairs to leave for London, we live an hour and a half away from St. George’s Hospital. We managed to get there in one hour! But we checked in at the Champney’s Ward and waited for twelve hours whilst they ran tests to make sure that the kidney was good enough of a match for me, and it was!

For three years I was so adjusted to dialysis and not feeling ill, I did not realise how unwell I looked until I saw myself in a mirror and the colour had come back in my face and I felt invincible again. I was so unbelievably overwhelmed and happy that this had happened to me.

I have to give an honourable mention to my good friend Tom for going through the tests to see if he was a good match to donate me a kidney. He’s truly one of the main heroes of my story.

After a week of being in hospital, it was time to go home. After all those sessions of dialysis, having a fistula installed into my arm, having a tube coming up my chest into my neck. To not needing anything like that again I was emotional. All that treatment was replaced by little tablets.

And here we are, three years after the operation, my blood tests are every three months and I rarely see a doctor, and all in all, going great. Alisha and I now live together and have a baby on the way, I too now work in the wonderful NHS as an Administrator. And I make sure every step I take isn’t for granted, after all the pain and horrors I went through, to now just living my life. It’s amazing.

I love my life. I wouldn’t change anything. Being born with kidney failure was never the issue for me, it was the misunderstanding that people had. Thank you for reading my life story. Well, my kidney story, my life story is just as normal as anyone else’s I met a girl, fell in love and now we’re having a baby.

Below are some photos of me took whilst going through different stages. The first photo was taken after the first few sessions of dialysis. The next two photos where whilst I was an inpatient, and the last photo of me in bed with the glasses, that photo was taken on day one after my most recent transplant.

Digital Presence

WEBSITE

In 2023 the NKF reached over 1 million page views.

ACCESSIBILITY TOOL

After two years, it is evident that the accessibility feature on the NKF website has become a widely used tool. Our objective remains to enhance equality, diversity, and inclusion on our website. Thanks to the assistive toolbar, we have been able to personalise our site, thereby making it more accessible.

The most well-liked features have created interest from over 20 languages, such as Greek, Hungarian, Persian, Western Frisian, Armenian, Arabic, Polish, Bengali, Albanian, Urdu, Czech, Icelandic, Afrikaans, Albanian, Indonesian and Punjabi.

Webinars

During 2023, the NKF have hosted more webinars than ever before. You suggest what topics, we listen.

Webinars that were hosted included the following topics:

Patients Know Best

Patients Know Best is a platform which has been designed to help health and social care providers bring together patient data, along with the patient’s own data and is a re-platform transition from a previous system, it is a place for all your health information. The webinar explored how the platform can be used to find the data you need. The presenters were Ron Cullen, Chief Executive, UK Kidney Association, Retha Steenkamp, Medical Statistician at UK Renal Registry, Darryl Nicholas and Mohammad Al-Ubaydii, Patients Know Best.

SOCIAL MEDIA

Some previous social media graphics are shown below…

Skincare

A joint webinar with the NKF and PKD Charity, this live session covered all aspects of looking after your skin as a renal patient with guest speaker Dr. Jacqueline Nevols.

What

can

Kidney

Patient Associations offer you?

The webinar explained what local Kidney Patient Associations do, including helping one another, holding social events, getting closer links with your local hospital or how you can give something back. The presenters were David Coyle, NKF Chairman and Manchester Royal Infirmary KPA Officer, Fiona Broomhead, NKF Senior Office Administrator, Lupinta Molina, Kent KPA’s NKF Representative and Sharon Orpen, Dudley KPA, KPA Officer.

Matching for Transplant

The NKF teamed up with PKD Charity to host a session on matching for transplant – a guide to compatibility and blood tests with guest speaker, Dr Judith Worthington, Principal Clinical Scientist.

Kidney Beam

An exclusive KPA only webinar was also hosted, with guest speaker Dr Sharlene Greenwood, a Consultant Physiotherapist at King’s College Hospital, to explore the lifestyle management service, Kidney Beam. The webinar was an update to Kidney Patient Associations on the service, how many people are using it and how even more kidney patients can access it, as well as providing future aims for 2024.

Each webinar is available to watch again, we’ve nearly had half a million of viewers in total from our YouTube channel!

To view the NKF webinar recordings visit: www.kidney.org.uk/Event/nkf-webinar-series

Kidney Life and In Touch

The NKF’s quarterly Kidney Life magazine and monthly In Touch e-newsletter have continued to grow readership and engagement keeping our community informed.

Kidney Life

The NKF’s Kidney Life magazine continues to be an informative resource to the kidney community.

We understand that not everyone may have access to the internet, or would prefer a paper copy of the magazine. With a circulation of 12,500 magazines that were printed and posted out each quarter in 2023 to renal units, kidney patients, NKF supporters and associated professionals, we believe we are supporting patients voices by sharing their stories far and wide, as well as providing renal updates and information that may be helpful to inform, educate or inspire.

The magazine is also published online via our website www.kidney.org.uk in an enhanced ‘flip page’ digital format via ISSUU. The magazine is also emailed out to over 12,600 subscribers.

If you would like a copy of the magazine posting to you, please call 01909 544 999 or email your name and address to nkf@kidney.org.uk, or visit our website and subscribe via the link: www.kidney.org.uk/news/kidney-life

In Touch

We are proud to say that our free monthly e-newsletter continues to be produced inhouse with over 12,000 subscribers reading the publication.

One of our favourite sections of the newsletter is ‘Kidney Patient Association of the Month’, where we explore the history of a particular KPA and get an insight into how they support kidney patients within their local areas.

In addition to this, we also share upcoming activities such as our NKF webinar series, KPA Day, Annual Patients’ Event and World Kidney Day, plus our charity’s achievements, renal industry updates and patient support.

Like the Kidney Life magazine, it is published online via our website www.kidney.org.uk in an enhanced ‘flip page’ digital format via ISSUU.

If you would like to opt in to receive the In Touch e-newsletter you can sign up for free at: www.kidney.org.uk/news/intouchnewsletter

Fundraising

Our supporters have been exceptionally generous this year giving to the NKF, not only support from the public, but from businesses, charitable trusts and grant givers. Your support powers all that we do to help those that are in most need.

Best Foot Forward Challenge

The Best Foot Forward Challenge, is an annual NKF walking fundraising challenge that consists of 68,000 steps to represent the number of people in the UK being treated for kidney failure.

Top fundraisers from the Best Foot Forward challenge were:

1 Louise and Jessica Harris – £1,775

2 Peter Gillespie – £1,295

3 Etty Gafan – £1,205

4 John Howard – £810

5 Lenka Novak – £615

Claire Hardy

“The reason I chose to raise funds for the National Kidney Federation and undertake their Best Foot Forward Challenge is because my partner has been a dialysis patient for six years now, he has been on home dialysis for nearly a year. I enjoy walking and finding a challenge that helps me to keep fit mentally and physically.”

Choctober

Most kidney patients cannot eat chocolate, and for a child this must be such a punishment, each year the NKF encourage families of loved ones affected by kidney disease to take part in their Choctober Challenge. The challenge takes place every October where we give up chocolate for the month whilst raising money.

Ian Standland

“I am so happy to be involved with the National Kidney Federation and raising funds as part of the Best Foot Forward Challenge, I am two years posttransplant and I am very pleased with my progress. During the month of June, I also played football in Holland with the England Transplant Football Team and got those extra steps in, over 50,000 of them! As a football team we are sponsored by the National Kidney Federation and we have enjoyed every minute being involved in supporting their services.”

Pictured here are some of the wonderful patients and families taking part and doing their bit to support the NKF.

Top fundraisers from the Choctober challenge were:

1 Jane Smith and the team at Natixis£1,539

2 Andrew Shepherd – £1,260

3 Blossom Martin – £641

4 Fiona Cadney – £265

5 Vivienne Fulda – £175

An average of 6,200 people donated their items via the NKF clothes bags per month around the UK in 2023

Let’s not forget our amazing fundraisers who took on other fundraising events, whether you took on a marathon, tandem skydive or organised a fundraising event yourselves, we appreciate all of your hard work and determination to raise awareness and funds for the NKF and for our community who need your support.

We couldn’t do our work without you…

Darnell Humes from West Bromwich took on not one, but two fundraisers for the NKF. The first was a high energy fundraising challenge, the Tough Mudder event, involving running fifteen kilometres with thirty brutal obstacles, featuring ice pits, monkey bars, electroshock therapy and a series of wall climbs. Darnell’s second challenge involved an ultramarathon, taking on an impressive sixty miles! Darnell in the process raised £460!

Neeta Kantepudi celebrated her 65th birthday with family and friends whilst asking them to kindly donate to the National Kidney Federation and raised over an amazing £1,000!

Rachel Bishop rose up to the challenge and trained to take part in the 2nd largest marathon in the UK in memory of her sisterin-law Sarah. Rachel took on the Manchester Marathon and raised over £1,000!

Orthi Shahzad took part in the Hackney Half Marathon raising over £1,000 in memory of her Auntie, “I chose the NKF because the work you all do in the UK is something she would have appreciated if she had access to it. Kidney disease is a lesser-known illness and I wanted to raise awareness about it.”

Tele Mobereola organised a fundraiser whilst taking part in a competitive Muay Thai boxing event. Tele raised over an incredible £2,000, “I decided to support and fundraise for the National Kidney Federation as my family has been significantly impacted by renal failure. Thankfully, my mum is now 20 years post-transplant but I remember when we were younger some of the most difficult issues of the illness was not just the medical aspect, but rather the impact on quality of life.”

Anirudh Patel took the leap and skydived for the NKF raising over an incredible £2,000. “The reason I chose the NKF to raise funds for is, being a transplant recipient I know what it is like, my journey through dialysis and receiving patient support it was a difficult time for us. Having turned 40 this year, I had the thought to do something to mark the occasion and do some good too.”

Mike Nash embarked on the challenging climb of Mount Kilimanjaro to honour his father, who has battled kidney disease for many years. The journey that led to Michael’s feat is one of love and hope. Mike raised over an amazing £4,500!

Thank Yous

Vifor Pharma

Baxter

Takeda

BD

Astellas

GSK

AstraZeneca

Chiesi

Fresenius Medical Care

Stanningley Pharma

B – C H 1971 Charitable Trust

C A Rookes Charitable Trust

Catherine Cookson Charitable Trust

Lillie Johnson Charitable Trust

Michael Cornish Charitable Trust

Sir Donald and Lady Edna Wilson

Charitable Trust

Sir John Eastwood Foundation

The Ardwick Trust

The Barbour Foundation

The Diana Edgson Wright Charitable Trust

The Dixie Rose Findlay Charitable Trust

The J P Jacobs Charitable Trust

The Linmardon Trust

The Lord Belstead Charitable Trust

The Marsh Charitable Trust

The Michael and Anna Wix

Charitable Trust

The Patrick Trust

The Rest-Harrow Trust

The Thoresby Charitable Trust

The National Kidney Federation (NKF) is a national charity that provides support and information to patients, families, and healthcare professionals affected by kidney disease. Our aim is to improve the quality of life and support for kidney patients and their families and raise awareness about kidney disease.

Our patient support services include a free to call Helpline, an array of patient information leaflets, and home dialysis peer support. We also work closely with healthcare professionals and lobby to government to improve kidney care for over 68,000 kidney patients suffering end-stage renal failure, and the estimated 3.5 million people identified as having chronic kidney disease (CKD stages 3 to 5) in the UK.

For more information on the support we provide, please visit our website: www.kidney.org.uk

Call our Freephone Helpline on 0800 169 09 36 or email helpline@kidney.org.uk