In Touch
Issue One Hundred and Fifteen | January 2024
Information from the National Kidney Federation. Supporting kidney patients, their friends & family.
Welcome to the October 2022 In newsletter. If you are receiving 02 Touch Welcome this newsletter fromand someone else Peer and Support 02 NKF Home Dialysis Shared Care notService the NKF, you can contact us and request to -be added 13th to our 03 KPA Day Saturday Aprilmailing 2024 list. 04 KDARS for Kids - Brave Bean Awards 2024
NKF Helpline 05 Skincare in Renal Transplant Patients 07 Dialysis Emergency Cards - Back in Stock! 08 NEW NKF Helpline Leaflet - Exercises for Kidney Patients NKF Fundraising 09 Why Not Start the Year Off with An Activity Packed Adventure 09 Shop Online and Support Us 10 Your Legacy Could Give Other Kidney Patients A Brighter Future Patient Participation Opportunities 10 Do You or Someone You Know Have Chronic Kidney Disease (CKD)? Kidney Community 11 Share Your Story: Whether You Are a Patient or Family Member; Your Story Matters 11 Have You Read Our Latest Issue of Kidney Life? 11 Your Feedback Matters 12 Fundraising Events 2024 Adverts 13 Lakeland Dialysis 13 Mesogeios 14 Euromedica 15 NKF KPA Members
Is there something you would like to share in the next newsletter? Email sharney harney@kidney.org.uk by Thursday 8th February 2024. Page 1
Welcome...
The National Kidney Federation would like to welcome you to the first In Touch e-newsletter issue of the year! For those who may have only just recently subscribed to the newsletter, you will be able to see over the coming months our monthly e-newsletters including the latest news about our charity and what projects and events we have been involved with to ensure we continue to be a lifeline of support for those who have been affected by kidney disease. Also included within our e-newsletter is renal industry news, NKF Helpline advice, information about the Kidney Patient Associations around the UK, patient participation opportunities, fundraising opportunities to support the NKF, shoutouts to our supporters and much more. We hope you enjoy this issue! All the best, The National Kidney Federation
NKF Home Dialysis and Shared Care Peer Support Service The NKF Home Dialysis and Shared Care Peer Support Service provides an opportunity for patients to have a one-to-one chat and share home dialysis queries, similar life experiences and lifestyle stories with trained home dialysis and shared care peer supporters. Patients can be matched with a peer supporter who has experienced shared care and/or home dialysis themselves or a carer for someone on home dialysis. For help, advice or for some reassurance surrounding home dialysis, contact our free to call Helpline on 0800 169 09 36 available Monday to Thursday 08:30am - 5:00pm and Fridays 08:30 - 12:30pm. For more information, visit our online Peer Support page: www.kidney.org.uk/peer-support
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Issue One-Hundred and Fifteen | January 2024
KPA Day - Saturday 13th April 2024
We are pleased to announce our registration is now open for this year's Kidney Patient Association Day. The event will be held at the Arden Hotel, Birmingham on Saturday 13th April 2024 starting at 10am and coming to a close at 4pm. For Kidney Patient Association’s to attend, it is a great networking event to meet and share successes with other like minded KPAs. The day will involve the launch of our 2024 Increasing Home Dialysis Report, break-out group discussions, KPAs sharing best practice, feedback from each group discussion, NKF's Annual General Meeting and an NKF Council Meeting. Completed nomination forms to apply to be a member of the Executive Committee must be received by the NKF office by 1st March 2024. The new Executive Committee will be elected on the day. Being a member of the Executive Committee is your chance to contribute to the governance of the NKF, the largest kidney patient charity in the UK. You will provide guidance on how the NKF can help provide support to kidney patients, their families and carers. Your KPA will have a representative on a national charity. There are five meetings per year, usually held via zoom. If you are a KPA and would like to register to attend and nominate a member to be part of the NKF Executive Committee, please email nkf@kidney.org.uk or call us on 01909 544999.
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Issue One-Hundred and Fifteen | January 2024
E V A R B
Supported by:
N A E B
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n’s e r d l i h c ur o y f o ity s n r o i e t v a d r a b A celerage through cou Join Us We are hosting an event for parents connected by the experience of having children with kidney disease. It's a chance to recognise the bravery of our little ones (aka kidney beans), reconnect with old friends, and make new ones.
ACTIVITIES The opportunity to speak to other parents Free certificates for the children Lunch Magician and Disco DATE:
E V E NT 2024
16th
MARCH RADISSON BLU HOTEL, EAST MIDLANDS AIRPORT, DE74 2TZ Page 4
FREE
RESERV E YO SPOTS UR
Issue One-Hundred and Fifteen | January 2024 FOR BOOKINGS AND RESERVATIONS, SCAN THE QR CODE OR CONTACT THE DETAILS ABOVE
NKF Helpline - 0800 169 09 36 Skin Care in Renal Transplant Patients
Introduction Skin care is very important for everyone, but particularly for renal patients who have received a transplant. Following a transplant, you will be prescribed medication to suppress your immune system. This will lower the risk of your body rejecting the new kidney. Your body’s immune system is also responsible for fighting viruses and bacteria, as well as to repair damage caused by ultra-violet radiation and other harmful effects on the body. Cells that have been damaged by UV light and viruses may eventually become abnormal. Occasionally, these abnormal cells can start to grow and become cancerous. This information is to give you more information about how to look after your skin, and how to reduce your risk of developing problems like skin cancer in future. Ultraviolet light (UV light) Although the sun gives us light and warmth, the sun also emits radiation that we cannot see, called UV light – which can cause damage to skin cells. UVA light is able to penetrate the deeper layers of skin and leads to ageing of the skin over time, as well as skin cancer. UVB light causes sunburn, and with repeated exposure, it increases the risk of skin cancer. The earth’s natural defences in the atmosphere – called the ozone layer – do filter out some of the damaging UV rays, but unfortunately, the ozone layer is being depleted over time, reducing some of this protection. How do my drugs affect my skin? You will be aware that the special drugs you are taking to keep your kidney working and prevent rejection are immunosuppressants reducing the effectiveness of the immune system in the skin. The sun penetrates through the outer layer of your skin called the epidermis, and can damage the cells that are growing, causing changes in them. Part of the role of your immune system is to recognise cells that have become abnormal, and to destroy them before they cause a problem. When you are immunosuppressed, your immune system is less able to recognise and destroy abnormal cells, so there is an increased risk of skin cancer. This means that lower levels of sun exposure than usual are capable of causing skin cancers in transplant patients, compared to individuals who are not taking immunosuppressants. This is why it is very important that all patients who are immunosuppressed should avoid exposing themselves to the sun. Page 5
Issue One-Hundred and Fifteen | January 2024
Skin Infections Due to the drug regime, transplant patients are also prone to certain skin infections. Skin infections are usually easily treated. It’s a good idea to keep a close eye on your skin and report any problems. If you have any concerns about changes in your skin – for example, rashes, discolouration or itching – please talk to your renal team or GP. Warts Another skin ailment frequently seen in transplant patients is common warts. Warts are caused by viruses. Transplant patients are more prone to viral infections due to the immunosuppression. Some warts are very infectious and can be spread anywhere over the body just by scratching one. Warts are usually easily treated, but very rarely they can cause other problems. Please keep a look out for them and bring them to the attention of your renal team. Sun damaged skin Any changes in the skin need to be carefully monitored. Solar or Actinic keratoses, or sun-spots, are conditions that may become cancerous in the future, so they are usually treated at an early stage. They are usually found on sun exposed sites such as the backs of hands, the face or scalp. Sun-spots can remain dormant many years, but eventually they are activated by the sun: in winter they may actually seem to get better, but as soon as you go out in the summer they swell up and become more active. The larger they become, the more likely it is that they will become cancerous in future. Sun-damaged skin is more common in transplant patients, and seen at an earlier age than the general population. This is because the normal function of the immune system is impaired by the anti-rejection medication. As with any kind of cancer, it is highly important that they are detected and treated early. Most skin problems – including actinic keratoses and other pre-cancerous skin conditions are managed in primary care. They can often be managed using special skin creams. Cancer There are 3 main types of skin cancer. The most common form seen in the general population in Britain is a basal cell carcinoma (or rodent ulcer). They are common in elderly people, but are now being seen in much younger age groups, due to sun exposure. Basal cell carcinomas are locally invasive and will grow bigger with time, but they do not spread round the body. They may appear as red or pink patches, usually with a raised, rolled edge with a central indentation. The most common form of skin cancer in transplant patients is a squamous cell carcinoma. They usually look scaly or crusty in appearance, and may cause discomfort. If left untreated, they can spread throughout the body. The other type of skin cancer is a melanoma. These can appear as irregular, pigmented patches on the skin. They can sometimes develop from moles you already have on your skin. It’s important to keep an eye on your moles, and report any new moles, or any changes in size, pigmentation or any itching or bleeding from a mole. Melanomas can also spread to the rest of the body. Prevention is better than cure As with all illnesses, prevention is better than cure. Transplant patients should consider the following advice to protect their skin for the future.
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Issue One-Hundred and Fifteen | January 2024
• Always wear a high factor sun-cream (ideally SPF 50) when going outside, taking particular care in the summer months. • Pay particular attention to sun-exposed areas e.g. your face, scalp, hands and the tops of your ears. • Be aware that your skin is still exposed to UV light even when sitting in the shade. • Cover your skin with clothing as much as you can – for example by wearing long sleeves and hats. • Be aware that having a tan does not protect your skin for UV damage. • The use of sunbeds must be avoided. • Consult your GP or renal team if you notice any changes in your skin. Written by Jacqueline Nevols Consultant Nephrologist The National Kidney Federation cannot accept any responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.
Dialysis Emergency Cards - Back in Stock!
Great news! Our dialysis emergency cards are now back in stock and free to order. These handy cards are designed for kidney patients to simply place in your purse or wallet to alert paramedics in an emergency, this will tell them that you are a kidney patient and to take care. On the card, you can provide information, such as your hospital's name and contact number. It's a small card that can make a big difference in a critical situation. We also have transplant emergency cards available free of charge! To order your own dialysis or transplant emergency card, please visit our website and fill in the form provided: www.kidney.org.uk/Pages/Category/online-help-resources#Patient_cards Or call the NKF Freephone Helpline on 0800 169 09 36, alternatively email helpline@kidney.org.uk. Page 7
Issue One-Hundred and Fifteen | January 2024
NEW NKF Helpline Leaflet: Exercises for Kidney Patients - Now Available
The National Kidney Federation are pleased to announce a new booklet has been created with the Leicester Kidney Lifestyle Team, Exercises for Kidney Patients. This 36-page A5 booklet contains 28 exercises for kidney patients plus includes instructions on using resistance bands safely with warm up, and cool down picture demonstrations. Created with kidney patients in mind, this is an ideal booklet for patients. Each exercise has a difficulty level rating. To order your FREE copy of this new booklet please call the NKF Helpline on 0800 169 09 36 or email helpline@kidney.org.uk.
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Issue One-Hundred and Fifteen | January 2024
NKF Fundraising Why Not Start the Year Off with An Activity Packed Adventure? Support the National Kidney Federation and sign up to one of our fundraising challenges! We have a variety of low and high impact activities to choose from on our website including… 5k and 10k distance options around the UK, inflatable fun, overseas treks, even the chance to skydive! Or why not create your own fundraising challenge in support of a friend or family member? Join our army of NKF supporters and help us to continue our vital patient support services for kidney patients in the UK. Explore the variety of events we have to offer you in your region today: www.kidney.org.uk/Pages/Events/Category/event.
Shop Online and Support Us Give As You Live Online is a free and easy way to raise money for the National Kidney Federation when you shop online. All you need to do is simply sign up for a free Give As You Live account and start shopping at the selected 6,000+ stores as normal to make a difference and choose the National Kidney Federation as your chosen charity! Give As You Live will then make a free donation to your chosen charity. Click here to get started: www.giveasyoulive.com/charity/nkf
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Issue One-Hundred and Fifteen | January 2024
Your Legacy Could Give Other Kidney Patients A Brighter Future As valued supporters of the NKF, we want to tell you about a free service we are offering, a free will writing service. We have teamed up with freewills.co.uk to provide all of our supporters with the opportunity to make their own fully comprehensive will for free. You can make your personalised will online in three simple steps. To find out more please visit our website here: www.kidney.org.uk/legacy-giving We provide information on the most common ways of leaving a gift in a will, steps to make or change your will, if you already have a written will but would like to add a gift to the National Kidney Federation and so much more.
Patient Participation Opportunities
Online survey participants needed Do you or someone you know have Chronic Kidney Disease (CKD)?
Please scan the following QR code to take the survey:
If so, please participate in our online survey about your dietary knowledge of CKD and how this helps you to manage your condition.
The questionnaire should take you no more than 20 minutes. *Participants must be over 18 years of age and live in the UK.
If viewing on a smart phone, please click on the QR code to access the survey from the browser
Protocol No.: acLMS/CL/UH/05065(2) Approving Committee: The University of Hertfordshire Health, Science, Engineering and Technology Ethics Committee with Delegated Authority If you have any queries about this survey, please contact Hemagni Mistry hm21abh@herts.ac.uk or Avantika Rana ar21aef@herts.ac.uk.
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Issue One-Hundred and Fifteen | January 2024
Kidney Community Share Your Story: Whether You Are a Patient or Family Member, Your Story Matters Share your experiences and show your support to others who may be on a path similar to yours.
Whether it be about your experience with dialysis, a kidney transplant, as a live donor, family member, carer, or a friend, your story could help others. It could even be sharing a story about a new hobby you have taken up since your kidney diagnosis. Please send in your story to: sharney@kidney.org.uk.
Have You Read Our Latest Issue of Kidney Life?
Check out our Winter issue of Kidney Life online: www.kidney.org.uk/news/kidney-life
If you would like a free paper copy of Kidney Life please email nkf@kidney.org.uk.
Your Feedback Matters Your feedback helps us improve our services and provide better support.
We believe in continuously improving our patient support services and we understand that feedback is crucial in this process. Please send your feedback to: nkf@kidney.org.uk. We appreciate the time taken to share your thoughts with us.
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Issue One-Hundred and Fifteen | January 2024
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Issue One-Hundred and Fifteen | January 2024
HOLIDAY DIALYSIS CARE IN THE LAKES!
Look forward to a great holiday in the stunning Lake District whilst letting Lakeland Dialysis cater for all your haemodialysis needs in a relaxed and professional atmosphere. WHERE ARE WE? Situated on the Northwest edge of the Lake District National Park, adjacent to the Cumbrian market town of Cockermouth we have been specialists in holiday dialysis since 2004. Things to do include taking in the majestic fell views, visiting the steam railway, cruising on a lake or just relaxing and enjoying the rich and local hospitality on offer.
QUALITY CARE Regulated by the CQC we pride ourselves in offering: personal and professional care, individual appointment times, disabled parking facilities and ground floor access.
TREATMENT COSTS ARE COVERED BY THE NHS BOOKING WITH US For more information, please speak with your Renal Team, contact us on 01900 822 888, e-mail info@lakelanddialysis.co.uk or visit our website www.lakelanddialysis.co.uk where you can make a booking enquiry, as well as access lists of locally available LakelandDialysisinCockermouth accommodation recommended by previous visitors to the clinic.
Lakeland Dialysis Ltd, Unit 7E, Lakeland Business Park, Lamplugh Road, Cockermouth, Cumbria, CA13 0QT
www.lakelanddialysis.co.uk
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Issue One-Hundred and Fifteen | January 2024
Combine top quality dialysis treatment with amazing holidays, on the island of Rhodes Dialysis Centre is a state-of-the-art dialysis unit, located within the Euromedica General Clinic of Rhodes, in Greece, that complies with European standards of health and safety while providing quality dialysis services in a modern setting. The centre is located just 10 minutes from Rhodes town, 4Km from the resort of Kallithea and 9Km from the popular resort of Faliraki.
We accept the European Health Insurance Card (EHIC)
Contact Us: info@euromedica-rhodes.gr / int@euromedica-rhodes.gr T. +30 22410 45000 / 45280 / 45222
euromedica-rhodes.gr
Pagead_Euromedica_MTN-uk_180x267_131023.indd 14 1
Issue One-Hundred and Fifteen | January 16/10/232024 5:57 PM
NKF KPA Members
Currently there are 49 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 mike@kidney.org.uk Addenbrooke's KPA Shropshire KPA Aintree KPA Six Counties KPA Barts Renal Patients' Association South Eastern KPA Bristol Area KPA South East Scotland KPA Chesterfield KPA Southport Kidney Fund Colchester KPA St Helier and Surrey KPA Coventry & Warwickshire KPA Tyneside KPA Doncaster and Bassetlaw Kidney Association United Norwich KPA Dorset KPA Wessex KPA Dudley KPA West London KPA Exeter & District KPA West Riding KPA Friends of Derriford Hospital Kidney Unit Ysbyty Gwynedd KPA Gloucestershire Kidney Patients' Association Guy’s & St.Thomas’ KPA Associate Members Heart of England KPA British Association of Social Workers (BASW) Hope KPA K.D.A.R.S Humberside KPA Kidney Cancer UK Ipswich & District Kidney Association Isle of Wight KPA If you are a Kidney Patient Association Kent KPA that would like to become an NKF King’s KPA member please contact Mike May on: Kernow KPA 01909 544999 or email: Leicestershire KPA mike@kidney.org.uk Lister Area 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
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Issue One-Hundred and Fifteen | January 2024