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NKF In Touch Information from the National Kidney Federation – supporting kidney patients,

their friends & family Date: APRIL 2018 Issue: FORTY SEVEN Welcome to the NKF In Touch newsletter for March 2018. Please forward any articles etc that you would like sharing via the next newsletter to Fiona Broomhead fiona@kidney.org.uk by 10th May 2018.

GENERAL DATA PROTECTION REGULATION (GDPR) Consent form A warm welcome to all our regular readers and to many more new readers this month at the request made from many members on their GDPR consent form. Remember that you may change your communication preferences at any time by calling the office on 01909 544999 or putting your request in writing to NKF, The Point, Coach Road, Shireoaks, Worksop, Nottinghamshire, S81 8BW. If you still haven’t returned your consent form, please print off the attached and return to the address above or email to fiona@kidney.org.uk. Alternatively you can click here and it will take you straight to our website and the link to register your communication preferences. Please do not send a repeat of the GDPR form unless you have reason to believe that NKF has not received it. It is taking NKF time to record all the forms received.

Contents: Action Point Page GDPR Consent forms 1 Information NKF Conference 2018 2 NKF KPA Day 2018 3 Transport for Dialysis Patients 4 Austin Donohoe 4 NKF Coffee Morning 4 NKF Helpline Information available for children with 5 kidney disease NKF Fundraising Spring draw 2018 5 Thames Bridge Trek 5 London Marathon 6 Cohens Chemist 6 Boundary Mill 6 Ben Nevis 6 Weekly Lottery 6

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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If we do not receive your consent to communicate with you, you will stop receiving your Kidney Life magazine by post/email and all communication from us after 25th May. Further information about the regulatons can be found on the Information Commissioner’s Office (ICO) website www.ico.org.uk/for-the-public

NKF Conference 2018 Hilton Blackpool Hotel – 19th – 21st October

Conference sponsor Conference sponsor

The draft programme for the weekend is as follows: -

Date Time What’s happening Speaker

Friday 19.00 – 23.00

Buffet supper and Quiz

sponsored by:

Saturday 09.50 – 10.00 Welcome and Introduction Conference Chair

10.00 – 10.20 NKF Update Timothy Statham

10.20 – 10.45 From Retrieval to Transplantation Afshin Tavakoli

10.45 – 10.55 Question Time

11.00 – 11.25 Coffee Break

11.25 – 11.50 Home Haemodialysis Carer Bud Abbott

11.50 – 12.15 Renal Disease in Europe Mark Murphy

12.15 – 12.25 Question Time

12.25 – 13.35 Lunch

13.35 – 14.05 From London to Paris David Marshall

14.05 – 14.35 Staying connected at Home Home HD patient and nurse

14.35 – 15.05 Coffee Break

15.05 – 15.30 PITHIA Trial Gavin Pettigrew

15.30 – 15.55 An interview with TBC

15.55 – 16.05 Question Time

16.05 – 16.15 Close Of Conference NKF Chairman

18.45 for 19.30 Gala Dinner followed by a Disco

Sunday 10.30 – 11.30 Council Meeting

Please use the attached boking form, or call 01909 544999 to book your place. If you would like to exhibit, please call the number above.

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NKF KPA Day 7th April 2018 The NKF would like to thank everyone who attended the KPA Day last weekend; it was a very successful and enjoyable event. The NKF AGM meeting during the day saw the election of the new Executive committee for the next year.

Michael Abbott (Treasurer)

Gloucestershire KPA James Barr

Lancs and South Cumbria KPA

John Burdett

Northamptonshire KPA Brian Child

North East KPA

Jim Higgins

Northamptonshire KPA Wajid Iqbal

Manchester Royal Infirmary KPA

Holly Loughton

Lancs and South Cumbria KPA David MacDonald Wessex KPA David Marshall (Chairman)

SAKA

George Palmer

Exeter & District KPA Guy Richards

Exeter & District KPA

Tracey Sinclair (Secretary)

Wessex KPA Richard Van Roon Six Counties KPA

Ken Tupling (SAKA) remains President

There was some wonderful speakers during the day and the NKF would like to thank them all. We had Stephen Emmerson from the NKF Helpline taking about how the helpline runs. Dr Paul Harden spoke about caring for young kidney patients, along with a patient Richard Simpson. Jim Higgins spoke about what Northamptonshire KPA does and got feedback from other KPAs. The new Kidney Life Editor, Sumaya Masood, spoke about Kidney Life and its future plans. There was some great feedback from attendees and we hope to do a similar event next year.

Stephen Emmerson – NKF Helpline

David Marshall – NKF Chairman

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NKF has major victory in preventing Patients being charged for Transport to dialysis in KERNOW CCG area.

NKF is now in possession of the final decision from the KERNOW CCG dated 5th April. In the letter is revealed a complete victory for renal patients who are now no longer under the threat of being charged. This decision is a complete vindication of the tough line that NKF and the APPKG (All Party Parliamentary Kidney Group) took in demanding that patients travel to Dialysis should remain free under the NHS and not be subject to any form of financial or medical means testing. The NKF view was, and still is, in strict contrast to the line taken by other renal charities. The key point is that dialysis patients have won the day, Kernow has backed down, and a damaging precedent has not been set for other CCGs to follow. If ever KPAs or individual patients wanted proof of the value of the NKF, and the value of the APPKG (The APPKG is serviced by the NKF) then this is it. Madeleine Moon MP, chair of the APPKG has remarked as follows:- “Excellent news Tim and thank you for your warm words. Partnership was successful.

Madeleine Moon MP, Bridgend“

It is with much regret we have to inform you of the recent death of Austin Donohoe. Austin was elected NKF chair from 1997 - 2000

Coffee Morning The staff at the NKF Head Office will be holding a FREE coffee morning for local members. Please support us and come and have a cuppa and a chat. We look forward to seeing you on the 9th May.

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Information from the NKF Helpline

0800 169 0936 (Free to call)

Our children’s leaflet information is now available from the NKF Helpline.

With the help of the Nottingham City Hospital’s Children’s Kidney Network we can offer patient information leaflets on a range of children’s kidney problems including Dietary Advice for Children on Dialysis, Transplantation in Children, Caring for your Child’s in-dwelling Catheter. We have links on the Young@nkf section of our website https://www.kidney.org.uk/help-and-info/kids/ to this information.

Draw Tickets Thank you to everyone that has sent the draw tickets back to be in with a

chance to win one of the great prizes including £1,500, if you have not taken part yet you still have until Friday May 4th. Good luck and thank you for your

support.

Thames Bridges Trek Thank you to those who have signed up for the Thames Bridges Trek, we still have places available – it’s on the 8th of September. Join other trekkers as we venture across the Capital taking in unrivalled views of the skyline from its best vantage points. Setting out from Putney Bridge - we head East towards the City, zig-zagging over the array of historic bridges - each with its own fascinating story - and a mid-point stop in Vauxhall for some snacks and drinks. Then we have the finish line celebration in Southwark past the majestic Tower Bridge. A great opportunity to get out, get fitter, meet others, and explore the very best of London! For more details or to sign up please visit the NKF web site https://www.kidney.org.uk/thames-bridges-trek-2018/ or call 01263 722287

Fund Raising

NKF Helpline

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London Marathon On Sunday 22nd April will be the famous London Marathon and we are very pleased to tell you that two people will be running to raise money for the NKF, Clare Key and Paul Presland, we really appreciate their support and wish them luck.

Cohens Chemists We are pleased to announce that we are going to be working with Cohens the Chemist, they have 229 branches across the UK and each branch will have an NKF collection pot and most importantly will display Organ Donor Registration leaflets.

Boundary Mill Store, Colne We are still looking for volunteers to do bucket collections at the Boundary Mill Store in Colne. If you are interested please contact Pete@kidney.org.uk or call 01263 722287.

Ben Nevis The June Ben Nevis event is completely sold out but we do have good news that we still have a few places left for the September event, This is an fantastic weekend with transport to and from the rail station, accommodation and food all part of the sponsorship, all you need to pay is the deposit. If you are interested, be quick but visit www.Kidney. org.uk/fundraising or call the fundraising office on 01263 722287

NKF Weekly Lottery More and more people are joining our weekly lottery with a chance to win up to £25,000. If you have joined thank you for your support, if you fancy joining us please visit

https://www.theweatherlottery.com/charitiesHomepage.php?client=NKFUK_HEALT

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