In Touch
Issue One Hundred and Sixteen | February 2024
Information from the National Kidney Federation. Supporting kidney patients, their friends & family.
Welcome to the October 2022 In Touch newsletter. If you are receiving News this newsletter someone else and Member 02 Would You Likefrom to Become an NKF Executive notNow theisNKF, you can contact us and Your Chance! request toBe beJoining addedUs tofor our mailing 03 Will You KPA Day onlist. Saturday 13th April 2024? Make Sure to Register Your Interest! 04 NKF’s Home Dialysis Peer Support Service Now Funded by The National Lottery Community Fund for 2024 04 Brand New NKF Helpline Leaflet: Carer’s Information Helping Your Loved One Manage Their Renal Condition 05 KDARs for Kids Brave Bean Awards 2024 06 Kidney Life Spring Issue Now Available! NKF Helpline 07 What Are SGLT-2 Inhibitors? NKF Fundraising 10 Protect Your Fistula with an NKF Wristband 10 NKF Water Bottles Available via Our Online Shop 10 Play Our Weekly Lottery for the Chance to WIN £25,000! 11 The NKF’s Free Will Writing Service 12 Enter the NKF Spring Draw 13 Fundraising Events for 2024 Patient Participation Opportunities 14 Calling All Kidney Patients – Have Your Say! 14 CKD Market Research Opportunity 14 Do You or Someone You Know Have Chronic Kidney Disease (CKD)? 15 Commonground Research Participants Needed 16 Are You Living with a Kidney Transplant and Taking Immunosuppressants? 16 Do You Suffer from Fatigue that Interferes with Your Daily Life Due to a Medical Condition? NKF KPA Members 17 NKF KPA Members
Is there something you would like to share in the next newsletter? Email sharney harney@kidney.org.uk by Friday 8th March 2024. Page 1
Would You Like to Become an NKF Executive Member? Now is Your Chance!
Are you interested in becoming a Executive Member for the National Kidney Federation? As an Executive Member, you'll play a vital role in shaping the future of the charity and advocating for improved kidney care across the UK. Your responsibilities will include attending three online meetings per year, as well as a face-to-face meeting, along with the option to participate in other virtual sub-committee meetings. This is an excellent opportunity to make a difference to the lives of kidney patients and contribute your voice to important decisions within the organisation. People of all ages and backgrounds are encouraged to apply. For more information or to express your interest, please contact NKF Office Manager, Donna Blizard: donna@kidney.org.uk Your involvement could have a significant impact on the NKF's mission to support kidney patients and improve healthcare services nationwide.
NKF Executive Committee Members 2023 - 2024 Page 2
Issue One-Hundred and Sixteen | February 2024
Will You Be Joining Us for KPA Day on Saturday 13th April 2024? Make Sure to Register Your Interest!
Our annual KPA Day is being held this year at the Arden Hotel, Birmingham on Saturday 13th April 2024, 10am - 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 - An NKF Council Meeting. If you are a KPA Committee Member and would like to register to attend and nominate a member to be part of the NKF Executive Committee, please email donna@kidney.org.uk or call us on 01909 544999. If you are a patient member of a KPA, please encourage your committee to attend so that feedback can be given at your next KPA meeting.
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Issue One-Hundred and Sixteen | February 2024
NKF's Home Dialysis Peer Support Service Now Funded by The National Lottery Community Fund for 2024
The NKF Home Dialysis Peer Support Service goes from strength to strength, our service is recognised as a designated provision by B.Braun, Diaverum, and Fresenius Medical Care, and thanks to the generosity of The National Lottery Community Fund for funding the Home Dialysis Peer Support service for 2024. The NKF Home Dialysis Peer Support Service is a free support service aimed at supporting people who: - Would like someone to talk to regarding the options of dialysis at home - Are on home dialysis and would like further support - Or would like to talk about shared dialysis care The National service offers an opportunity for patients to have a one-to-one chat about home dialysis queries, shared dialysis care, similar life experiences and lifestyle stories with fully trained peer supporters. Patients can be matched with a peer supporter who has experienced home dialysis or shared dialysis care themselves or a carer. Covering the whole of the UK, our peer supporters are available to give support over the phone, through Zoom and face-to-face discussions, depending on location. Please call the NKF Helpline for more details on 0800 169 09 36 or visit: www.kidney.org.uk/peer-support
Brand New NKF Helpline Leaflet: Carer's Information Helping Your Loved One Manage Their Renal Condition We are excited to tell you about a new leaflet created by our NKF Helpline Advisors and endorsed by the Welfare Rights and Psychology Department.
This leaflet is designed for people who take care of others and provides information on the benefits, the psychological impact of caregiving, and common challenges faced by caregivers. It explains the concept of unpaid care and why it's important to officially recognise someone as a caregiver. It also gives guidance on what a local authority can do to support carers. If you would like free copies of this leaflet, please get in touch via our free to call Helpline on 0800 169 09 36 or email helpline@kidney.org.uk. Page 4
Issue One-Hundred and Sixteen | February 2024
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Issue One-Hundred and Sixteen | February 2024
Kidney Life Spring Issue Now Available!
Our Spring 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 and we will send you one. In this issue we... - Provide details of upcoming events for 2024. - Peter Constable, a Trustee of NKF, pens a tribute in memory of pioneering British Surgeon, Sir Roy Calne who has passed away at the age of 93. - We reflect on the impact of our National Home Dialysis Peer Support Service. - Jane Colebrook shares her story of hope, resilience and the power of a second chance. - Chetan Joshi tells us about his kidney journey which started back in 2004. - The NKF Spring Draw returns, plus so much more! 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.
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Issue One-Hundred and Sixteen | February 2024
ARE YOU READY FOR...
WORLD 14TH KIDNEY MARCH DAY 2024 The NKF have hundreds of information leaflets, if your renal centre is celebrating the day and is spreading awareness on all things kidney, why not order some free of charge before the big day? Remember to share our social posts on the day and show your support this World Kidney Day and highlight the importance of kidney health to friends and family. If you have organised an activity or event around the day, let us know what you are doing and we can provide materials. Email: sharney@kidney.org.uk Page 7
Issue One-Hundred and Sixteen | February 2024
NKF Helpline - 0800 169 09 36 What Are SGLT-2 Inhibitors?
SGLT-2 inhibitors, also known as ‘flozins’, are tablets that were originally developed as a treatment for diabetes, but have now been found to also help your heart and your kidneys. SGLT-2 inhibitors have been shown to be very safe for kidney patients and actually protect the kidneys, slowing the decline of your renal function. They do this by helping to remove excess sugar and salt from the body, via your urine. In doing this, it also helps to reduce high blood pressure within the kidney to protect it from long-term damage. Examples of SGLT-2 inhibitors include canagliflozin, dapagliflozin and empagliflozin. Who should take SGLT-2 inhibitors? SGLT-2 inhibitors are recommended for adult patients with chronic kidney disease to help slow the decline of your kidney function. Before starting an SGLT-2 inhibitor, your doctor should make sure that you are already on the highest tolerated dose of an angiotensin-converting enzyme (ACE) inhibitor or angiotensin-receptor blocker (ARB) (unless you are allergic or unable to take one of these medications). SGLT-2 inhibitors can be used for patients with chronic kidney disease stages 2, 3a, 3b and 4 (eGFR 20-90 ml/min/1.73m2). The amount of protein in your urine and whether or not you have type 2 diabetes will determine whether an SGLT-2 inhibitor is suitable for you – your doctor will be able to tell you if you might benefit from starting treatment. How do I take this medicine? SGLT-2 inhibitors are to be taken once a day, at the same time each day. You can take the tablet with or without food. If you forget to take your tablet and remember later the same day, you can take it when you remember – if you do not remember until the next day, do not take an extra tablet to make up for the missed dose, just take your next dose at the usual time. Are there any side-effects? Many people will not experience any side effects while taking an SGLT-2 inhibitor, but it is important to be aware of the common and more significant side effects and what to do if you experience them. Common: - Dehydration – this may occur because SGLT-2 inhibitors increase the volume of urine your body produces. To avoid dehydration, you should make sure that you are drinking enough water to maintain pale, clear urine and increase water intake if you feel dehydrated.
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Issue One-Hundred and Sixteen | February 2024
- Low blood sugar levels – this is usually only experienced by patients who have diabetes and are on other blood glucose lowering drugs. If you have diabetes, ensure your GP and/or diabetes team are informed when you start this medication. - Fungal genital infections – SGLT-2 inhibitors increase the concentration of glucose in the urine, which can increase the risk of thrush in the genital area. This is easily treatable, and your pharmacist or GP can give you advice if you experience irritation or itching in your genital area. Maintaining good hygiene and avoiding tight underwear and perfumed soaps will reduce the risk of infections. Rare side effects which are important to know about for all patients: - Fournier’s gangrene – this is an extremely rare but serious infection of the genitalia or the area between the genitals and the anus. You should stop taking your SGLT-2 inhibitor and seek urgent medical attention if you have a fever or feel unwell along with severe pain, tenderness or swelling in these areas. Rare side effects which are important to know about for patients with diabetes: - Diabetic ketoacidosis – this is where there is a build-up of an acid called ketones in the blood, which can cause you to feel sick, drowsy, dizzy and confused. It can also cause your breath to smell like pear drops. The risk is increased if you do not eat or drink for prolonged periods of time, and if you drink too much alcohol. This can happen even if your blood glucose levels are normal. If you think you have any of these symptoms or think you have developed ketoacidosis, seek urgent medical attention. What if I become unwell while taking an SGLT-2 inhibitor? It is important that you temporarily stop taking your SGLT-2 inhibitor if you become unwell with symptoms such as fever, vomiting and dehydration, or if you are fasting (e.g. before an operation). By temporarily stopping, you will reduce your risk of becoming more dehydrated and unwell. If you are in any doubt, speak to your GP, pharmacist or nurse for advice, or call NHS 111. Once you have been eating and drinking normally again for 24-48 hours, you can continue taking your SGLT-2 inhibitor as usual. If you have planned restriction of food intake (e.g. Ramadan), speak to a healthcare professional for advice. Written by Matt Holloway: Renal Pharmacist – East Kent Hospitals University NHS Foundation Trust Hollie Curtis: Renal Pharmacist – East Kent Hospitals University NHS Foundation Trust 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.
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Issue One-Hundred and Sixteen | February 2024
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Issue One-Hundred and Sixteen | February 2024
NKF Fundraising Protect Your Fistula with an NKF Wristband We know how important it is to protect your fistula to enable your dialysis treatment. If you would like to purchase a fistula wristband to wear outside of your home and in case of an emergency, please visit our online shop: www.kidney.org.uk/pages/shop/department/wristbands Our wristbands are clearly labelled *Fistula left arm* *No BP Testing / Needles* OR *Fistula right arm* * No BP Testing / Needles* and are £1.00 each plus postage and packaging. You can also call to order on 01909 544999 where we can take payment by card. If you are a Kidney Patient Association or renal unit that would like to order in bulk, please call the office number above.
NKF Water Bottles Available via Our Online Shop Do you have your eyes on an NKF water bottle? Our sports bottles are 800ML with a liquid measure display. Available to purchase for £6.50 plus postage and packaging via our online shop today: www.kidney.org.uk/shop/water-bottle-with-liquid-measure
Play Our Weekly Lottery for the Chance to WIN £25,000! WIN up to £25,000 every week!
Just £1 per week, match 6 numbers and you will be £25,000 better off. Not only could you win one of four prizes but you would also be helping to support kidney patients and their families across the UK. For more details or to take part please visit: www.kidney.org.uk/join-our-lottery Page 11
Issue One-Hundred and Sixteen | February 2024
The NKF's Free Will Writing Service Life's journey is filled with uncertainties, especially for kidney patients and their caregivers who face unique challenges every day. At the National Kidney Federation (NKF), we stand as a beacon of support for both patients and carers, offering practical assistance and advocating tirelessly for advancements in renal healthcare across the United Kingdom. With your support, we can continue to make a meaningful difference in the lives of those affected by kidney disease. To empower our supporters and ensure their wishes are honoured, we've partnered with FreeWills.co.uk to provide you with the opportunity to create your own fully comprehensive Will at no cost. Crafting your personalised Will is now simpler than ever, thanks to FreeWills' user-friendly online platform. In just three easy steps, from the comfort of your own home, you can secure your legacy with expert guidance from their Will specialists. Learn more about this invaluable service by visiting: https://freewills.co.uk/charity/nkf Like many of us, you may have postponed making a Will for various reasons. However, consider the peace of mind and assurance that comes with having your affairs in order, especially when your loved ones may need it most. Making a Will is a straightforward process that ensures your wishes are respected and your legacy is protected. To access this free Will writing service and explore additional resources on inheritance tax, pecuniary gifts, and more, please visit our Legacy Giving webpage: https://www.kidney.org.uk/legacy-giving You will find answers to common questions and valuable insights to guide you through the estate planning process. Your support enables us to continue our vital work in supporting kidney patients and their families, together, we can make a lasting impact and ensure a brighter future for those affected by kidney disease. Thank you for considering this important opportunity to secure your legacy and support the NKF's work. If you have any questions or require further assistance, please contact NKF's Head of Marketing and Fundraising, Pete Revell via pete@kidney.org.uk.
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Issue One-Hundred and Sixteen | February 2024
Patient Participation Opportunities Calling All Kidney Patients - Have Your Say! Kidney Research UK are looking for people to complete their survey on their experiences of diagnosis and treatment. Kidney Research UK have commissioned a leading research agency to collate this information to inform their work. The results will help them to create meaningful change in healthcare and policy development, putting patients needs first and foremost. If you are a kidney patient living in the UK, please enter the survey below. At the end of the survey you will have the option to submit your responses anonymously, or to supply your contact details if you'd like to be kept informed about the survey results. To enter the survey visit: https://survey.sapioresearch.com/Interview/4f6dbaa3-f558-4741-a265-b084d878e59b
CKD Market Research Opportunity
Liberating Research, a UK based market research company are looking to speak to people in the UK aged 18+ who have been diagnosed with APOL1 mediated kidney disease. This is a paid market research opportunity, and anyone who takes part would be paid £90 as a thank you. This market research project will be running until the beginning of March. If you are interested in taking part you can find out more information and apply here: www.liberatingresearch.com/projects/302/505
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.
The study runs until 1st March 2024.
or click on the following link if you’re unable to scan the QR code: https://herts.eu.qualtrics.com/jfe/form/ SV_0SAIG32GT3MSHwW
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 Sixteen | February 2024
CommonGround Research participants needed CommonGround is a new intervention to support the emotional well-being for people living with long-term conditions. Co-developed by King's College London and people with physical health conditions, CommonGround is a peer support website where patients can anonymously share experiences, support each other, and access evidence-based self-help information.
What does the research involve? CommonGround
Co mm Gro un on d
Two short online assessments
(Checking if you can participate)
NHS webpages
OR
3 months of access to one of the interventions (via any device)
Online questionnaires at the start, middle, and end
The study will take 5-6 months (Including a wait period whilst other people sign-up)
If you volunteer for our research, you will access either: CommonGround: Our new peer support platform NHS Mental Health web pages on managing mental health You can participate if: You are an adult (>18yrs) living with any long-term physical health condition You have access to the internet You do not have a diagnosis of severe mental illness (bipolar, psychosis, post-traumatic stress disorder, schizophrenia) or dementia
All diagnosed longterm conditions INCLUDING
Asthma, Arthritis, COPD, diabetes, epilepsy, HIV & AIDS, liver disease, multiple sclerosis, sickle cell disease
To take part, contact us or scan here: Link: https://bit.ly/commongroundresearch Dr Grace Lavelle & Hannah Jones Email: commonground@kcl.ac.uk
Online peer support in long-term conditions: A team at King’s College London has developed a new online peer support platform in collaboration with people living with long-term physical health conditions. They are interested in finding out what people think about the new intervention, such as what they like and dislike. Want to get involved? Please click here: https://bit.ly/commongroundresearch
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Issue One-Hundred and Sixteen | February 2024
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 Shropshire KPA Aintree KPA Six Counties KPA Bristol Area KPA South Eastern KPA Chesterfield KPA South East Scotland KPA Colchester KPA Southport Kidney Fund Coventry & Warwickshire KPA St Helier and Surrey KPA Doncaster and Bassetlaw Kidney Association Tyneside KPA Dorset KPA United Norwich KPA Dudley KPA Wessex KPA Exeter & District KPA West London KPA Friends of Derriford Hospital Kidney Unit West Riding KPA Gloucestershire Kidney Patients' Association Ysbyty Gwynedd KPA Guy’s & St.Thomas’ KPA Heart of England KPA Associate Members Hope KPA British Association of Social Workers (BASW) Humberside KPA K.D.A.R.S Ipswich & District Kidney Association Kidney Cancer UK Isle of Wight KPA Kent KPA If you are a Kidney Patient Association King’s KPA that would like to become an NKF Kernow KPA member please call 01909 544999 Leicestershire KPA 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 Sixteen | February 2024