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

Date: May 2020 Issue: SEVENTY TWO Welcome to the NKF In Touch newsletter for May 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 fiona@kidney.org.uk by 10th June 2020.

Contents: Action Point Page NKF Annual Patients’ Event 2 Information Covidence UK 2 Messages for KPAs 3 Summer issue of Kidney Life 4 CKD and Type 2 Diabetes survey 4 NKF Helpline Update from Helpline 5 NKF Fundraising Spring Draw Result 6 Virtual Events 6 #kidneycovidcut 7 Forget-Me-Not Appeal 7 Announcement NEKPA 8

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

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NKF Annual Patients Event 2020 – CANCELLED The NKF has made the decision to cancel the Annual Patients’ Event scheduled to take place in October 2020 at the Radisson Blu Hotel, East Midlands Airport.

As disappointing as this is, we have to ensure the health and wellbeing of our supporters and staff whilst living with the unprecedented spread of COVID-19. We have already secured a booking for 8th and 9th October 2021 at the same venue for next year, details to be released closer to the time, but please save the date. Thank you all for your support.

Researchers from Barts and The London Medical School and other universities in London, Edinburgh, Swansea and Belfast would like to recruit people aged 16 years or older to take part in a national research study called COVIDENCE UK. This research is designed to find out how long-standing conditions like types of kidney disease may interact with other factors such as diet and lifestyle to influence susceptibility to coronavirus disease and its complications. The researchers are looking to recruit a broad mix of people from all over the UK, including those who have NOT had coronavirus infection, and those who HAVE already had proven or suspected coronavirus infection. The study will involve filling in an on-line questionnaire to collect information about your lifestyle, diet, longstanding conditions and prescribed treatment. Completion takes 30-60 minutes. After that, you will be contacted monthly via email to report possible symptoms of coronavirus disease. The data you provide will be linked to your medical records, to allow the study team to investigate whether coronavirus infection may affect long-term health. For further information, please visit the study website: www.qmul.ac.uk/covidence.”

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Message for KPA Officers

We sent you an email on the 5th April with a strategy questionnaire attached. Can we remind you to complete this and return via email to andrea@kidney.org.uk please.

A Message to all KPA Chairs

from Mark Davis, NKF Liaison Officer

With being a transplanted patient myself, I am continuing to self-isolate and work from home.

As many of us in the renal world, I am unable to currently travel anywhere and actually physically attend meetings, or visit renal units. So the time I have at present whilst working from home is enabling me to continue to telephone and speak with your good selves.

For those of you that I have not already spoken to directly, I

do apologise. Rest assured that I will be in contact with you over the next couple of months.

These are extremely challenging times for us all in the renal community. Anything I can do to assist your KPA whilst working remotely, then please do not hesitate to contact me directly either via email mark@kidney.org.uk or by telephone: 07931 657 111 Best Wishes, and stay safe

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Coming soon in our next issue…

Kidney Life is being sent out today to all who have requested a paper copy of the magazines and should be with you by early next week. If you currently don’t receive a paper copy and would like one, let us know and we will arrange this by calling us on 01909 544999. Please remember to update us with any change of address details.

Are you living with chronic kidney disease and type 2 diabetes?

If you live with chronic kidney disease (CKD) and type 2 diabetes (T2D), we would like to speak to you. We are looking for volunteers to help us delve into the findings of a recent survey which will uncover how aware the UK public is of CKD and T2D. Your perspective on the survey results and the reality of life will be used to help raise awareness of CKD and T2D. The meetings will take place over video conference and with your permission we record parts of our conversation for use publicly. If you would like to be involved, please contact Pete Revell at pete@kidney.org.uk or 01263 722287.

Napp Pharmaceuticals Ltd. has developed and funded this non-promotional project.

Due to current social distancing measures in place all interviews will take place via video conferencing from your home. You will require access to a laptop or smartphone and be asked to sign a form consenting to your participation in the project. Date of preparation: April 2020

UK/DIA-19091b

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Information from the NKF Helpline

Telephone (free to call) 0800 169 0936

Thank you to the National Lottery Community Fund for their financial support of the NKF Helpline.

NATIONAL KIDNEY FEDERATION HELPLINE and COVID-19

When it was first announced that public places like pubs and restaurants were closing and the schools and workplaces were also closing due to Covid-19 a great deal of confusion and worry broke out amongst the kidney patients of the UK. The Helpline telephone lines began ringing constantly with calls about the coronavirus. It was almost impossible for patients to ring their doctors’ surgeries and so we rose to the challenge of offering both emotional and practical help. Whilst the Helpline advisers are not medically qualified to give individual advice, we are very experienced and have dealt with all kinds of kidney related questions. Our vast library of medical information, written specifically for us by medical specialists, is used as our guidelines. At this point we had no renal specific information about Covid-19 to help us and we were rather flying blindly but we were able to use our experience to ask the right questions and use our vast library of kidney information to enabled us to understand the immediate help that patients needed. Very quickly the renal specific information for patients was published which made it easier for the Helpline to deal with the many different queries which kidney patients wanted to know. This has been an incredibly busy time for the National Kidney Federation with all staff rolling up their sleeves to offer the best help possible. Hopefully, this awful situation will soon be over and we can return to our normal, everyday lives and the NKF Helpline will be here offering help and advice to kidney patients from all over the UK and we will have seen off this dreadful virus. Before the Covid-19 outbreak our Helpline has taken many calls on all kidney related topics and if you would like to discuss your diagnosis with our experienced advisers please ring our free to call Helpline Number 0800 169 0936 Pauline and Stephen, our Helpline advisers will be happy to speak with you.

HELPLINE

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SPRING DRAW RESULTS Thank you to everyone who took part and supported the NKF spring draw which took place at the NKF head office on Wednesday 6th May. This is a very successful way of raising money for the National Kidney Federation and with a chance of winning £1,000. Without your support the NKF would not be able to continue our vital work with patients, carers and health care professionals. Congratulations to our winners, who have all been notified.

Ticket No Name

1st Prize - £1,000 032911 Mr A Loynes, Godalming

2nd Prize - £500 024522 Mr D J Hudson, Swindon

3rd Prize - £250 010071 Mrs C Parkes, Bridlington

4th Price - £50 079233 Mr Rose, Shrewsbury

5th Prize - £50 028575 Mr C L Baker, Ashford

6th Prize - £50 054572 Mr J Sewell, Exeter

7th Prize - £50 019247 Mrs J Tamplin, Neath

8th Prize - £50 058775 Mrs J Man, Cambridge

PLEASE HELP US, SO WE CAN HELP OTHERS

As you may have read in the latest edition of the Kidney life magazine, messages from the NKF Chief Executive and Head of Fundraising asking for support in these very unprecedented times, income into the charity is very limited with all collections and events being postponed or cancelled. We would appreciate your support, this can be in the form of many ways. As you will read we have virtual events, we have the very popular weather lottery where you can win £25,000 from just £1 per week (www.kidney.org.uk/join-our-lottery ) or regular or one off donations with more details at https://www.kidney.org.uk/ Thank you for your continued support. VIRTUAL EVENTS Thank you to those who have signed up for one of our virtual events, with all walking and running events either cancelled or postponed this is a great way to be still active, support the charity and still have a challenge, plus you still receive a medal at the end. There are lots of virtual events to choose from just click here

FUNDRAISING

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LOCKDOWN HAIRCUTS - #kidneycovidcut At the moment we are all in the same situation, not being able to go to the hairdressers or barbers, needs must - and we are asking family members to cut our hair, some good and some not so good. Here at the NKF we would love to see your home haircut, please post your photo on our social media pages https://www.instagram.com/nkf.uk/ https://twitter.com/NKF_UK https://www.facebook.com/KidneyNKF/ and tag #kidneycovidcut and if you would like, please donate some of the money you have saved from not going to the hairdressers to the NKF at https://www.kidney.org.uk/Appeal/donate

CELEBRATE THE LIFE OF YOUR LOVED ONES THIS SUMMER

Celebrate the life of a loved one lost to kidney disease, our Forget-me-not Appeal this year as we celebrate and reflect on the lives of loved ones who are no longer with us.

In making a donation to the National Kidney Federation, you’ll be helping us support kidney patients, their families and carers at a time when they need information to help them live the best life possible.

We couldn’t do what we do without the amazing generosity of our supports. In these current uncertain times, we need your support more than ever to continue providing support through our helpline and to continue campaigning for improvements to renal provision and treatment.

As you can imagine the Coronavirus outbreak has resulted in our helpline staff working harder than ever to ensure that kidney patients, families and carers have their concerns answered. This year, you can dedicate a Forget-me-not flower in our virtual Memory Meadow, and share your memory with family and friends.

DEDICATE A FLOWER TO HONOUR A LOVED ONE

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North East Kidney Patients Association

Membership to NEKPA is FREE and open to all patients and carers in the area.

We have recently expanded our area and now cover the renal units associated with James Cook University Hospital, Middlesbrough and Royal Sunderland Hospital and their satellite units in

Stockton, Darlington, North Ormesby, Durham and Washington.

Newly diagnosed patients are encouraged to join the association to find out about the benefits and services available to you.

You can now join the association online via the NEKPA website - click here

To unsubscribe from this newsletter please email nkf@kidney.org.uk

ANNOUNCMENTS