NKF In Touch...impact of profile raising activities. For further details including requirements and to apply please click here 6 The UK initiative is led by the Kidney Charities Together

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Who NKF seeks to influence: NHS England NHSBT NICE Department of Health Government Ministers Welsh Government Northern Ireland Assembly Scottish Government All Party Parliamentary Kidney Group Trusts and Hospitals

Contents: Action Point Page KPA Day 2020 2 Information Annual Patients’ Event 2020 2 KPA Information 3 Kidney Life Spring 2020 4 Autosomal Dominant Polycystic Kidney Disease 4 Getting It Right First Time 5 Job Vacancy 5 World Kidney Day 2020 6 Patient Reported Experience 7 Vascular Disease Research 7 NKF Helpline Holiday Guide 2020 8 Why having high cholesterol puts you at risk of developing kidney disease 9 Travel Insurance 9 NKF Fundraising Transplantiversary 10 Clothes Collections 10 Get on Your Bike 10 Water Challenge 11 Spring Draw 12 NKF Ambassadors 12

NKF In Touch Information from the National Kidney Federation Supporting kidney patients, their friends & family

Date: February 2020 Issue: SIXTY NINE Welcome to the NKF In Touch newsletter for February 2020. Please feel free to share with your friends, family and colleagues. If you are receiving this newsletter from someone else and not the NKF, you can contact us and request to be added to our mailing list. If you have an article that you would like sharing via the next newsletter, please forward to Fiona Broomhead at [email protected] by 10th March 2020.

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HAVE YOU REGISTER TO ATTEND THE NKF KPA DAY? This is an opportunity for you to have your voice heard. This year’s KPA Day event will be held at the Radisson Blu Hotel, East

Midlands Airport on Saturday, 4th April 2020. The day will commence at 10.30am, with registration open from 10.15am. We have some great speakers throughout the day and information from a KPA about what they do. In addition, our very own NKF Liaison Officer, Mark Davis,

who will be giving a talk on his new role within the NKF and a speaker from NHS Blood and Transplant talking about the Kidney Sharing Scheme. If you would like to attend our meeting, free of charge, with lunch and refreshments included for all attendees that have registered, please call 01909 544999 to register. KPA reminder – nominations for the NKF Executive Committee need to be with us by next Friday 21st February.

ANNUAL PATIENTS’ EVENT 2020 Supporting kidney patients and their families

Plans are still under way for this years’ Annual Patients’ event but we are pleased to announce the arrangements made so far with you. The Event will be held at the Radisson Blu Hotel, East Midland Airport on the 9th and 10th October as the feedback given from last year’s questionnaire showed it to be a very popular venue. The weekend will kick off with an increasingly popular social evening (optional) on the Friday, kindly sponsored by Stanningley Pharma, with a hot 2 course buffet followed by a game show and quiz night. We have managed to keep the price the same as last year, £14 per person or free to the first 100 kidney patients who book. Accommodation at the hotel will be the same as last year, £75 for a single room and £85 for a double room. These prices include bed and breakfast the following morning. On Saturday we will have a variety of influential speakers from kidney patients to professionals. There will be displays from and array of exhibitors showing their products and services ranging from holiday dialysis to supporting kidney patients. Lunch and refreshments are provided throughout the day. The price for the day’s attendance is £50 per attendee.

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Make sure you have your vote

Saturday evening (optional) we will have a sit down meal, with a special menu catering for renal patients and any other special dietary requirements, and at the request of many guests who have previously attending, we have arranged for a magician to do table magic and a performance after dinner, before we finish the evening with a disco. The price for the dinner is £25 per person. We have a special price for a full weekend attendance of £130 for a single room and £180 for double room (that’s just £90 each). That’s a saving of £95 single and £140 double. This includes Friday bed and breakfast, Saturday day delegate, Saturday evening dinner and Saturday bed and breakfast. There will be the Friday supper to add to this price if you are joining us for the buffet, don’t forget kidney patients receive a free buffet. The confirmed programme will be shared in the summer issue of Kidney Life where you will also find the booking form. If this is something you are interested in attending please discuss with your KPA at your next meeting, as many KPAs fund patients to attend. You may also make your bookings direct with the NKF, by calling 01909 544999.

KPA INFORMATION

The National Kidney Federation (NKF) is a charity run by patients for patients and it the largest kidney charity of this kind. The NKF is the national umbrella organisation for the Kidney Patient Associations (KPAs) throughout the UK. KPAs are the members of the NKF along with their individual members. Please remember to let us have your membership list updates so that patients of your hospital/KPA can receive their free copy of Kidney Life. We provide a service for kidney patients throughout the UK. We rely on KPA support to spread the name of the National Kidney Federation, so that your patients know we are here and what help we offer to patients and their carers. The NKF rely on KPAs updating us with any changes of officer positions on their committee. It is important to keep the NKF up to date, so that the correct contacts are receiving important emails and information to share with their members. This is usually provided after the AGM by the KPA. If you think your data may be out of date, please let Fiona know by emailing your updates to [email protected] and she will ensure your KPA records are amended accordingly. The key committee members are Chairman, Vice Chairman, Secretary, Treasurer, Membership Secretary (also known as mailing rep). For KPAs with full membership to the NKF they appoint an NKF Representative on their committee. This representative will attend meeting on behalf of their KPA and report back. Remember the NKF Representative has the right to vote at the NKF annual AGM and the twice yearly Council meetings (next meeting 4th April) on behalf of their KPA.

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KIDNEY LIFE, SPRING 2020

Kidney Life is a free magazine for kidney patients that is produced four times per year. This will be arriving through your letterbox any day now. Alternatively you may view this by clicking here. If you do not receive your free copy please give the NKF a ring and we will pop you a copy in the post and check your records to ensure you receive future copies. Inside this issue read how Haylay’s transplant enabled her to compete in the World Agility Championship, a young adult’s perspective on fighting kidney disease and how a student of a radiographer tutor donated his kidney to her. There’s also facts around the Opt-Out myths and how Digital Technology transforms renal patient experience.

If you have a story you would like to share with our Kidney Life readers please contact our editor, Sumaya Masood on [email protected]

YOUR HELP PLEASE WITH DISSEMINATING THE ADPKD RESEARCH PRIORITY SETTING PARTNERSHIP (PSP) SURVEY

Help identify the top ten most important things to research in ADPKD - autosomal dominant

polycystic kidney disease.

The PKD Charity, in association with James Lind Alliance, has collected a range of ideas from

patients, carers and healthcare professionals to find those that remain unanswered - such as how

to stop cysts growing, how to slow progression, what's the best diet, how can PKD care be better

organised.

Now we want YOU to pick the research ideas that are most important to YOU. It doesn't matter if you are a patient directly affected by ADPKD, a family member or carer, or health/social care professional. It should only take a few minutes but your voice will influence ADPKD research for years to come.

Thank you very much for your support!

Take part in the survey by clicking here

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NHS England appointed in July 2017 joint Clinical Leads Dr Graham Lipkin of University Hospitals Birmingham and Dr William McKane of Sheffield Teaching Hospital for this project to review renal services in England. After around 2 ½ years of dedicated work, The Getting It Right First Time (GIRFT) team have now completed their visits to all 52 specialist renal centres in England. This is a national programme designed to improve medical care within the NHS by reducing unwarranted variations. By tackling variations in the way services are delivered across the NHS, and by sharing best practice between Trusts, GIRFT identifies changes that will help improve care and patient outcomes, as well as delivering efficiencies such as the reduction of unnecessary procedures and cost savings. The full report of this in-depth audit of all 52 of England’s renal centres is anticipated to be released later this year. Emerging themes identified appear to be those relating to Vascular access, Transplantation access and Home therapies. For more information on this project, please visit https://gettingitrightfirsttime.co.uk/

COMMUNICATIONS AND MARKETING OFFICER

As the charity moves forward in 2020 we are looking for a Communications and Marketing Officer, responsible for communicating and marketing the work of NKF and the impact and benefits for the people we support. In particular, we’d like you to liaise with sectoral and mainstream press to raise awareness of our work and impact, including drafting press releases for approval and handling media enquiries.

Communications and Marketing Officer Responsibilities:

- Implement and contribute to our communications and marketing strategy, and Communications & Social Media Calendars.

- Draft engaging and informative copy for our website and social media channels, liaising with colleagues to ensure coherence and prioritisation of messaging.

- Draft media features, articles and press releases, liaising with the CEO and Head of Fundraising. - Lead with the development of our annual review and other key publicity materials. - Take the lead on updating and maximising the effectiveness of our social media channels,

ensuring coherence with NKF marketing and communications activities, including tracking the impact of profile raising activities.

For further details including requirements and to apply please click here

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The UK initiative is led by the Kidney Charities Together Group comprising the four leading UK kidney charities,(National Kidney Federation, Kidney Care UK, Kidney Research UK and PKD Charity) along with the UK Renal Association and British Renal Society. The focus for the UK in 2020 will be #KIDNEYSMATTER –The BIG topic everyone’s ignoring – which will show how important kidneys are, what can happen when they go wrong and how to keep them healthy and reduce the risk of kidney disease. #KIDNEYSMATTER features a big yellow kidney – which is hard to ignore and will be

launching on the WKD website, www.worldkidneyday.co.uk very soon. For 2020’s World Kidney Day, the major kidney charities and professional organisations in the UK are working together to raise awareness about the vital role our kidneys play.

Our new campaign #KIDNEYSMATTER – The BIG topic everyone is ignoring will show how important kidneys are, what can happen when they go wrong and how to keep them healthy and reduce the risk of kidney disease.

What will you see?

#KIDNEYSMATTER features a big yellow kidney - which is hard to ignore. You’ll see it in a range of materials which you can share on social media, use to run awareness events, and as a talking point with your friends. And we’ll be working with people who can help get the message out as wide as we can, including the media and the kidney community.

We would love it if you got involved, and we are creating a range of materials for you to use to help us spread the word. These will be available shortly and you’ll be able to order them via the website www.worldkidneyday.co.uk.

In the meantime, keep up to date with the latest news by following us on social media!

www.worldkidneyday.co.uk Facebook Twitter Instagram

If you are holding an event for World Kidney Day at your hospital, dialysis unit or work place and would like some information leaflets/Helpline posters from the NKF helpline please contact our Helpline on 0800 169 0936 and we will be happy to assist.

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PATIENT REPORTED EXPERIENCE OF KIDNEY CARE IN THE UK 2019 To read the full report please click here

Vascular disease is the collective term for diseases of the veins and arteries. Every part of the body to which blood flows can be affected by it. It’s as common as cancer and heart disease and accounts for 40% of deaths in the UK, many of which are preventable

Research is needed to inform us about prevention, to develop new techniques for early diagnosis and to develop new and more effective treatments.

The Vascular James Lind Alliance Priority Setting Partnership (PSP) has been formed to identify unanswered questions about the prevention, diagnosis and treatment of vascular conditions from the perspective of patients, carers and vascular health professionals. Here at Hull York Medical School, our Vascular Research Group are managing the work of the PSP to address this. This PSP will help funders to provide resource to the areas of research that need it most – and ultimately make a difference to people’s lives

Complete the survey

We are asking patients and carers to fill out this short, anonymous survey.

Tell us about what questions you have about the prevention, diagnosis, or treatment of vascular conditions you would like to see answered by research.

COMPLETE THE SURVEY

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Information from the NKF Helpline

Telephone (free to call) 0800 169 0936

*NEW* “COMPLETE HOLIDAY GUIDE FOR KIDNEY PATIENTS 2020”

The NKF helpline have updated our Holiday guide for Kidney Patients for 2020, this guide is free to patients. Inside there is information on Dialysis Away from Base, Peritoneal Dialysis, Fitness to Fly, travelling with Medical Equipment, Airport Special Assistance, help in finding a dialysis unit for your dialysis away from base, UK Destinations, Overseas Destinations, Cruises, the Disabled Traveller, and travel insurance information and companies who specialize in pre – existing conditions. The handy A4 booklet is ideal for patients who are looking to plan a holiday or for patients who are on dialysis but have not yet thought about taking a holiday. Any dialysis units you wanting to display this booklet in your waiting rooms for patients, please contact the Helpline free to call on 0800 169 0936 or e-mail [email protected] to request your copy(s).

HELPLINE

Other Holiday Information leaflets.

Holiday Tips and guidelines.

Holiday guidelines for PD

Patients.

Holiday guidelines for HD

Patients.

Holiday guidelines for

transplant patients.

Travel vaccinations in

transplant patients.

Holiday Feet (Advice on

keeping your feet healthy when

going on holiday)

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WHY HAVING HIGH CHOLESTEROL PUTS YOU AT RISK OF DEVELOPING KIDNEY DISEASE

Unless you live with kidney disease or someone you’re close to has been affected, then you might not know that much about it and what causes it in the first place. Read this blog post on the NKF website https://www.kidney.org.uk/Pages/Blog/high-cholesterol-and-kidney-disease/post The NKF Helpline has an information leaflet which explains all about Cholesterol and Kidney Disease, if you would like copy of this leaflet please contact us at the Helpline.

Blog post by Laura Slingo

TRAVEL INSURANCE FOR PRE-EXISTING MEDICAL CONDITIONS

Travel Insurance for pre-existing medical conditions

In August 2019 the National Kidney Federation assisted the Financial Conduct Authority with their survey regarding travel insurance for people with medical conditions in an effort to help patients to find the most suitable travel insurance cover for their medical conditions at the best prices. As a consequence of the findings of their survey the Financial Conduct Authority have made some changes to their handbook PS20/3. New requirements have been introduced to help consumers with pre-existing conditions better navigate the travel insurance market. “We have made changes to the Handbook to introduce new requirements to help consumers with more serious pre-existing medical conditions (PEMCs) to better navigate the travel insurance market. Firms that sell travel insurance will have to signpost consumers to a directory of specialist firms that provide this type of insurance. Further information https://www.fca.org.uk/publications/policy-statements/ps20-3-signposting-travel-insurance-consumers-medical-conditions The directory of specialist insurers should be in place by 5th November 2020 and the National Kidney Federation will ensure that any advice offered by our Helpline will be strictly in line with the new guidance. National Kidney Federation Helpline Monday to Friday 9am to 5pm 0800 169 0936 E-mail : [email protected]

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We are a charity that is successful because of you and your support! We rely on your continued support to be able to provide the service we do to kidney patients and their carers. This may be purchasing draw tickets, taking part in fundraising events, shop orders and Christmas card orders and/or regularly donations. If you would like further information on how you could support the NKF, please contact me on [email protected] or by phone on 01263 722287. Many thanks Pete Revell TRANSPLANTIVERSARY Thank you to everyone that has contributed to our web page celebrating kidney anniversaries, this makes a fantastic read and a real inspiration to anyone that has just received the gift of life. https://www.kidney.org.uk/your-kidney-anniversary CHARITY CLOTHES COLLECTIONS

A recent report has highlighted that 336,000 tonnes of unwanted clothes are sitting in UK homes, here at the NKF we turn unwanted clothes into money for the charity and just seen the best ever month. Thank you to everyone that supports the charity through clothes recycling and if you have a bag pop through your letterbox, please support us.

GET ON YOUR BIKE If you are a keen cyclist you will know all about the ultimate bike event called Prudential Ride London-Surrey 100, here at the NKF we are lucky enough to have two places on Aug 16th. If you are interested please email [email protected] or call 01263 722287. It is reported that this could be the final year of this event, so don’t miss out!

FUNDRAISING

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THE WATER CHALLENGE Following on from the success of last year’s water challenge, it is back this April, not only did the NKF raise lots of money, but so many people reported that they felt so much better from drinking water. Registration is now open and the first 50 supporters to register will receive an NKF water bottle, if you would like to take part please email [email protected] with your name and address.

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SPRING DRAW 2020 Any day now you should receive the spring edition of the NKF Kidney Life magazine, enclosed will be 3 books of draw tickets, with a first prize of £1,000 and a second prize of £500 kindly donated by the Sandercock family of Cornwall. If you don’t receive and tickets or you require more tickets, please contact the office at [email protected] or phone 01909 544999. GOOD LUCK!!.

NKF AMBASSADORS We are very proud and lucky to have such fantastic support for our charity, we appreciate everyone that fundraises or represents the NKF and a special few have gone the extra mile to support kidney patients but never been recognised, till now. We now have a page on our web site to showcase their achievements - www.kidney.org.uk/Pages/Category/ambassadors. Please take a look and read the stories behind the reason why they support the NKF.

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