In Touch newsletter May 2024

In Touch

Your Direct Kidney Connection

The National Kidney Federation are a primary resource committed to providing renal information and support.

What sets us apart is our unique status, the only National kidney charity that is entirely run by kidney patients for kidney patients.

Our commitment to the kidney community is further demonstrated by operating the only UK free to call Helpline and Peer Support Service dedicated to patients and their families facing kidney disease.

Our Helpline

Since 2001, the NKF Helpline has been a lifeline to many. Operating from Monday to Friday, our lines are staffed by two experienced Helpline advisers, Linda and Stephen.

Extensively trained and committed to directly addressing any questions posed by callers, Linda and Stephen bring a wealth of expertise to the Helpline which includes lived experience and direct peer support.

Stephen, a kidney patient himself, who has been twice transplanted and has been on dialysis, not only possesses in-depth knowledge about kidney-related matters but can also empathise with callers on a personal level.

Linda, having been a caregiver for her late husband with kidney disease, adds a unique perspective and has previous experience as an advocacy officer for kidney patients.

Linda and Stephen's knowledge spans various topics, ensuring that callers receive the highest quality of information. Linda and Stephen can offer assistance with diverse matters such as travel insurance, benefits advice, renal diet information, and much more.

Our Peer Support Service

The National Kidney Federation expanded its free patient support services in 2021 with the launch of the National Home Dialysis Peer Support Service.

The service has twenty-three trained peer supporters on standby who can provide guidance and advice based on their own personal experiences with kidney disease, shared care, home dialysis or caring for someone on home dialysis.

The NKF's Home Dialysis Peer Supporters are professionally trained volunteers, ranging in age from 25 to 80 years old, who have experience with shared care, home haemodialysis (HD), peritoneal dialysis (PD), going on holiday whilst on HD, PD, caring for someone on HD, lifestyle and working whilst doing home HD or PD.

Accessing the Peer Support Service

To access the Home Dialysis Peer Support Service, patients, caregivers or family members can call or email the NKF Helpline or fill in a referral form on our website. The NKF Helpline will evaluate the query by reviewing the completed referral form that outlines the person’s details, and then they will determine which peer supporter would be the most appropriate match.

Once peer support has taken place, the NKF Helpline contact both the peer supporter and the person who received support for their feedback. There are sometimes occasions when people want to speak to the same peer supporter they have spoken to previously and the NKF Helpline will be able to help set this up.

People find it really useful to speak with people who have experience in doing home therapies and it can help them decide which type of home therapies they do.

For more information about the service, please call the free to call NKF Helpline on 0800 169 0936, email: helpline@kidney.org.uk

Or visit the National Kidney Federation’s website to access the referral form and Home Dialysis Peer Support information leaflet: www.kidney.org.uk/peer-support

The National Kidney Federation’s Home Dialysis Peer Support Service is an excellent resource for anyone affected by kidney disease who is considering or currently undergoing home dialysis or shared care.

NKF Home Dialysis Peer Supporter

“My son has been on home dialysis since May 2021 since his transplant of eight years failed. Home dialysis has given him so much freedom and there have been lots of family occasions that he’s been able to go to as the flexibility means he can change his dialysis days and times to suit. I’m with him three days a week for dialysis and we enjoy our time together. He’s become an uncle recently and loves the days when his niece comes to visit him.”

Feedback from people who have used the NKF Home Dialysis Peer Support Service:

“I am getting close to starting dialysis and I was aiming towards doing PD but I was very worried about doing this at home as I live alone. I spoke to one of the NKF Home Dialysis Peer Supporters, and she was very kind, understanding and helpful, she answered all my questions and made me feel more positive about going on PD.”

“My husband is on in-centre dialysis and he had been thinking of looking into doing home haemodialysis. I was keen to be trained up as well to learn the machine and needling. I contacted the NKF Home Dialysis Peer Support Service and my husband and I spoke to one of their supporters who helps her husband with home haemodialysis. My peer supporter really was so helpful, supportive and explained everything thoroughly to us.”

Follow Us on Social Media...

Please follow us on our social media platforms for the latest updates and helpline information.

www.facebook.com/KidneyNKF/ www.instagram.com/nkf.uk

https://twitter.com/NKF_UK

https://uk.linkedin.com/company/nkfuk

www.youtube.com/@nationalkidneyfederation5995

Explore our Summer Issue of Kidney Life

Our Summer issue of Kidney Life is available to view online now!

It will also be landing in your letter box any day soon for those of you who requested a paper copy. If you are not registered to receive a free paper copy, but you would like to, please email nkf@kidney.org.uk with your postal address and we will send you one.

In this issue we...

- Feature highlights from our recent Kidney Patient Association Day

- Celebrate the courageous young children in the face of their kidney-related challenges with the KDARS for Kids Brave Bean Awards

- Provide information about our upcoming Annual Patients' Event scheduled for October

To view the magazine online visit: www.kidney.org.uk/news/kidney-life

As always if you'd like to share your story with us and be featured in the Kidney Life magazine, please get in touch via kidneylife@kidney.org.uk.

NKF Impact Report 2023 Out Now

We are pleased to announce the release of our latest Impact Report, providing a look at our accomplishments of 2023. This report offers a snapshot of our efforts and the significant outcomes we have achieved, all made possible by your generous support.

We hope you enjoy reading the report and trust that our achievements will offer you valuable insights into the vital work we undertake on behalf of kidney patients and their families throughout the UK.

We would not be able to provide the support without you.

For those subscribed to Kidney Life in print, a physical copy of the report will be included with your summer issue.

Explore our 2023 Impact Report here: www.kidney.org.uk/our-impact

Should you wish to receive a paper copy of the report, please contact us via email: nkf@kidney.org.uk

NKF Webinar Series Continues... Foot Care with Kidney Disease

Our FREE to join webinar series returns on Wednesday 19th June at 5pm!

The subject of the webinar will be all about foot care, presented by Joanne Casey who is the Professional Development Lead at the Royal College of Podiatry.

The webinar will discuss general footcare information including:

• How to protect your feet during dialysis

• Foot ulcers

• Advice to help care for your feet on holiday

• Charcot feet

• Footwear advice

A live question and answer session will also be available towards the end of the webinar.

To sign up to our FREE webinar please register via the following link: www.kidney.org.uk/Event/nkf-webinar-series

Would You Like to Share Your Home Dialysis Story with Us?

We are looking for individuals who are a part of our community to share their personal journeys and experiences with home dialysis.

This is your chance to highlight some of the positive impacts of what home dialysis treatment brings to you within the comfort of your home.

For instance:

• How does home dialysis integrate into your daily routine and lifestyle?

• In what ways does it grant you more freedom?

• Does it empower you to take charge of your treatment?

• What benefits does it bring from a carer's perspective?

Additionally, if you have any pictures of your home dialysis setup or yourself during treatment, we'd love to see them. Together, let's dispel the uncertainty surrounding home dialysis and look at the positives home treatment brings.

Please email our Communications and Marketing Officer, Sharney Warren, with your experiences and photographs: sharney@kidney.org.uk

The NKF Attends ANN UK Conference

Back in late April the NKF attended the ANN UK Conference, Andrea Brown, NKF Chief Executive and Pete Revell, Head of Marketing and Fundraising were on hand to chat to renal nurses about the NKF's patient support services and provide a wide range of information leaflets that are available from our library.

Did you know that our library has over 200 different leaflets?

The Helpline are also very fortunate to have knowledgeable renal healthcare professionals offer invaluable support to the NKF Helpline. Their expertise is greatly appreciated, and are credited for their contributions inside the library of leaflets we provide. We are grateful for their commitment to reviewing and editing these materials as needed, ensuring that they meet the highest standards of accuracy and usefulness for the patient.

We look forward to attending next year's ANN UK Conference!

Remember, if you would like to order any of our information leaflets free of charge please call our Helpline on 0800 169 09 36 or email helpline@kidney.org.uk.

We also have our library online via our website: www.kidney.org.uk/helpline-leaflets

Developing Messages to Promote Organ Donation by Faith Among Ethnic Minority Communities

On Tuesday 4th June 2024 NBTA and NHS Blood and Transplant are arranging a conference at the Resource for London, Holloway Road, N7 6PA, from 09:30 - 16:00.

The aim of the day is to develop messages to promote organ donation among ethnic communities by faith and discuss plans to raise awareness. The event aims to involve key individuals, faith leaders and organisations with experience and expertise in this area and NHSBT staff. The event will also share the latest information on the impact of the opt out law in England, data on organ donation and transplantation by ethnicity/religion and attitudes to organ donation by ethnicity and religion. There will be discussions by faith groups to develop messages and discuss plans to raise awareness about them will also take place.

Attendance to the event is by invitation, however, if you are interested in attending please email stephanie.norris@nhsbt.nhs.uk in the first instance.

Making Our Mark - Raising Awareness About Chronic Kidney Disease in Chemist's Across the UK

We are proud to announce that our brand new NKF poster is popping up in Cohen's Chemist's all across the UK.

Our aim with the new poster is to raise awareness about Chronic Kidney Disease and to be the main support system for those who may have recently been diagnosed by their GP.

We are here to support YOU. Whether that is as an individual with kidney disease, a family member, healthcare professional or carer. Our National Kidney Federation free to call confidential Helpline has two fully trained personally experienced advisers.

Call 0800 169 09 36, email helpline@kidney.org.uk or visit www.kidney.org.uk.

NKF Joins Kidney Beam Investment to Support Patients to Keep Active

We're excited to announce that we've joined forces with Kidney Beam as an investor!

The platform provides on demand exercise, live group classes and so much more to support those who live with kidney disease.

At the NKF, we recognise the importance of kidney health and are thrilled to support a service that aligns so closely with our mission.

For more information on how to register to Kidney Beam visit: www.kidney.org.uk/kidney-beam

Helpline - 0800 169 09 36

Protecting Your Feet During Dialysis

Why is kidney disease a risk to your feet?

Kidney disease is a lifelong condition which can cause life-and limb-threatening problems. Some of these problems can occur because the nerves and blood vessels are damaged.

This can change:

- the circulation in your feet (ischaemia); and

- the feeling in your feet (peripheral neuropathy).

These changes can be very gradual and you may not notice them. This is why we recommend that you have your feet assessed by a podiatrist every one to two months. You can then agree a treatment plan to suit your needs.

If your screening and assessment have shown that there is a high risk that you will develop foot ulcers. Your health-care professional will tick which of the following risk factors you have.

o You have lost some feeling in your feet

o The circulation in your feet is reduced

o You have hard skin on your feet

o The shape of your feet has changed

o Your vision is affected

o You cannot look after your feet yourself

o You have had foot ulcers before

o You have had an amputation

o You are on peritoneal dialysis or haemodialysis

Foot ulcers are breaks in the skin which may be difficult to heal. The development of foot ulcers in people with kidney disease may lead to serious complications and they are linked to an increased risk of heart attacks, strokes, amputations of the foot or leg and early death.

Controlling your cholesterol and blood pressure, quitting smoking, increasing cardiovascular exercise, controlling weight and managing any other conditions you may have (such as diabetes) helps to reduce the risk of these life and limb-threatening problems. Managing any excess fluid is also important.

Note: You may be at further risk of cardiovascular problems if you have a family history of heart disease.

As your feet are at high risk of foot ulcers, you will need to take extra care of them. You will need regular treatment by a podiatrist.

If you follow the advice and information provided, it will help you take care of your feet between visits to your podiatrist. Hopefully this will help to reduce problems in the future.

At the start of each dialysis cycle, you should be asked to remove any footwear and socks or stockings so that your feet can be examined.

A trained health-care professional will look for any signs of corns, calluses, changes in foot shape and changes in colour or temperature. If you have noticed any changes please let them know.

The health-care professional should also test your feet for numbness or changes in sensation (neuropathy).

They will ask you the following questions about your feet and how you manage any other medical condition you may have (for example, diabetes).

• Have you had any problems or changes to your feet (for example, cuts, blisters, broken skin or corns)?

• Have you had any previous foot problems or wounds to your feet?

• Have you experienced any recent pain or discomfort in your feet or legs?

• How often do you check your own feet, and what do you look for?

• Have you had any cramp-like pains when walking?

• How well are you managing any other condition (for example, diabetes)?

The health-care professional should also examine your footwear to make sure it is not causing you any problems.

At the end of the foot check, the health-care professional will tell you the results and give you advice about caring for your feet and your risk of foot problems.

Following your foot screening you may be referred to a podiatrist, who can help protect your feet during your dialysis treatment.

You may be advised to wear special protective boots during your period of dialysis. If you are given these, we strongly recommend that you take them to every dialysis session to help reduce the risk of your feet developing problems due to pressure from the couch.

Appointments

It is important that you attend all of your appointments with the Foot Protection Team or specialist podiatrist, as well as your other medical and renal review appointments. This will reduce the risk of problems developing.

What should I do if I have a concern or problem with my feet?

If you develop any of the following problems, it is important that you contact your Multi-disciplinary Foot Care Team, local Podiatry Department of GP for advice as soon as possible (within 24 hours).

• A red/discoloured, hot, swollen toe or foot

• A break in the skin that doesn’t heal

• New redness or discolouration of your toe or foot

• New or unexplained pain in your foot

If they are not available, go to your nearest accident and emergency department. Remember, any delay in getting advice of treatment when you have a problem can lead to serious problems.

Developed by the London Foot Care Strategic Clinical Network and the London Renal Strategic Clinical Network, with help from service users

Based on the original leaflet produced by the Scottish Diabetes Group – Foot Action Group Owned by the Royal College of Podiatry ©

The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.

Will You Put Your Best Foot Forward in Support of Those Affected by Kidney Disease this June?

Walk 70,951 steps in June and raise money to support people living with kidney disease.

Get active and improve your mental and physical health.

Get your exclusive Best Foot Forward t-shirt when you raise over £10!

Why 70,951 steps? This number represents the total number of people in the UK with a kidney transplant or on dialysis.

Sign up now and you'll be helping to make a life-changing difference to patients and families affected by kidney disease: www.kidney.org.uk/bff2024

We already have so many supporters joining ready to kickstart the challenge next month - a BIG thank you for all of your incredible support you are showing already. We can't wait to start the journey with you!

Don't forget, if you are signed up to the challenge to set up your JustGiving page: www.justgiving.com/campaign/bestfootforward2024

Spring Draw Winners Announced

The NKF Spring Draw took place on Wednesday 8th May 2024, the winners are:

1st Prize £1,000 - Mrs Sheila Dunscombe ticket number 117817

2nd Prize £500 - Karl Troop ticket number 063432

3rd Prize £300 - Abby Martin ticket number 021861

4th Prize £200 - Valerie Hollingsworth ticket number 073388

A big thank you to each and everyone of you who supported the draw and took part, we offered some great cash prizes this year!

Fundraising Events 2024

Explore the NKF's Online Shop!

Check out the latest products from our charity.

We have fistula and transplant wristbands available, t-shirts, running vests, pens, our Taste! cook book and so much more.

Visit our online shop today: www.kidney.org.uk/shop

Ensuring Our Website is Accessible to Everyone

Discover our online accessibility tool that is located on our website www.kidney.org.uk.

This designed web tool makes our website more user-friendly, regardless of abilities or impairments.

Many of our supporters find the tool useful, this month, our tools most used via the website include the screen reader, translation, styling tool and reading aids.

The top three translated languages are:

• Ukrainian

• English

• Yiddish

Check out our YouTube Channel for a video explaining how to unleash the accessibility tools full potential, whether that be to use our built-in dictionary, text to speech functionality or customisable page colours.

Check out our 'How To' video here: www.youtube.com/watch?v=A10Xva5xuzs

Combine top quality dialysis treatment with amazing holidays, on the island of Rhodes

Hemodialysis (HD) & Hemodiafiltration (HDF)

24-hour medical support

State-of-the-art technical equipment

Separate room for patients with Hepatitis and HIV CONTACT

We accept the European Health Insurance Card (EHIC) & UK Global Health Insurance Card (GHIC)

euromedica-rhodes.gr / dialysis-rhodes.com

NKF KPA Members

Currently there are 48 Kidney Patient Associations (KPAs) and their officers are the controlling council of the NKF. Please find the details below of the KPA's available or for more information please contact the NKF office via 01909 544 999 or email nkf@kidney.org.uk

Addenbrooke's KPA

Bradford KPA

Bristol Area KPA

Chesterfield KPA

Colchester KPA

Coventry & Warwickshire KPA

Doncaster and Bassetlaw Kidney Association

Dorset KPA

Dudley KPA

Exeter & District KPA

Friends of Derriford Hospital Kidney Unit

Gloucestershire Kidney Patients' Association

Guy’s & St.Thomas’ KPA

Heart of England KPA

Humberside KPA

Ipswich & District Kidney Association

Isle of Wight KPA

Kent KPA

King’s KPA

Kernow KPA

Leicestershire KPA

Lister Area KPA

Liverpool KPA

Manchester Royal Infirmary KPA

Manx KPA

North East Kidney Patients' Association (NEKPA)

Northamptonshire KPA

North Staffs & South Cheshire KPA

Nottingham and Notts KPA

Orkney KPA

Queen Elizabeth Hospital KPA

Royal Derby KPA

Royal Free Hospital KPA

Royal London Hospital KPA

Sheffield Area Kidney Association (SAKA)

Scottish Kidney Federation

Shropshire KPA

Six Counties KPA

South Eastern KPA

South East Scotland KPA

Southport Kidney Fund

St Helier and Surrey KPA

Tyneside KPA

United Norwich KPA

Wessex KPA

West London KPA

West Riding KPA

Ysbyty Gwynedd KPA

Associate Members

British Association of Social Workers (BASW)

K.D.A.R.S

Kidney Cancer UK

If you are a Kidney Patient Association that would like to become an NKF member please call 01909 544999