KIDNEY Spring 2018 issue LIFE · Spring 2018 issue The magazine of the National Kidney Federation...

KIDNEY PATIENTS UK

KIDNEYLIFEThe magazine of the National Kidney Federation

Autumn 2017 issue

NKF - making sure the voice of every kidney patient in the UK is heard

Eric Douglin - a gift frommy wife

Team Wessex cycle 206 miles in one day to raise funds for kidney patients

KIDNEY PATIENTS UK

Spring 2018 issue

The magazine of the National Kidney FederationLIFE

LITHIUM IN TAP WATER9

HOLIDAYING IN SICILY with Dialysis Mucaria

FundraisingYou’re amazing – keep up the good work

UltimateGift

Friend donates kidney

YOU NEED

TO ACT NOW!Pending regulations launched on the

25th May mean that we require your consent to contact you in future. See page 5...

THE CLOCK IS TICKING

INSIDE

Charity No. 1106735

General DataProtection Regulation

NKF would like to thank the following for their continued sponsorship of Kidney Life:Amgen Astellas

ChiesiMologic

NX StageRenal Services

Quanta

Photo kindly supplied by Nottingham University Hospital NHS Trust

2 | Spring 2018 | www.kidney.org.uk | HELPLINE 0800 169 0936

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Established1995

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For further information telephone 01202 422311

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HELPLINE 0800 169 09 36 www.kidney.org.uk Autumn 2017 3

Welcome to the autumn issue of Kidney Life. We hope you’re enjoying the warmer weather! It’s been a busy few months; a General Election brought about the dissolution of one All Party Parliamentary Kidney Group (APPKG) and begun the NKF’s job of stimulating interest in newly elected MPs to create another Group, equally committed to putting forward the case for good quality, and equity of access to care for kidney patients in the UK. The General Election also focused attention on a financially stretched NHS. Here too the NKF plays a vital role in ensuring our needs are highlighted and that funding for the care of kidney patients is protected.

We have news of an important trial to be launched in early October – the PITHIA trail (see page10) which could see successful, high quality kidney transplants increase in the UK by 10% (150) a year. We ask you to do your best to support this trial with us.

And bowing to pressure from you we welcome the return of a winter issue of Kidney Life, in digital format only. If you have an interesting story to tell us we would love to hear from you. Deadline for copy to us is the beginning of October.

Editor - Deborah DuvalAssistant Editor – Sue Lyon

IN THIS ISSUEAutumn 2017 issue

Page 4 What is CKD 3? Don’t panic!

Page 8 Salford Hope Dialysis ward therapists make a difference

Page 10 The PITHIA trial needs your help

Page 11 The Wessex Cyclists cycle 206 miles in one day to raise funds for kidney patients

Page 12 A kidney from my wife – by Eric Douglin

Page 23 Letters to Kidney Life

15 21

Registered Office:The Point, Coach Road, Shireoaks,Worksop, Nottinghamshire S81 8BWT: 01909 544999 F: 01909 481723e: [email protected] No. 1106735Co. No. 5272349 reg. in Eng. & WalesGive as You Earn contribution No. CAF.GY511

Our Helpline is free of charge to call on 0800 169 09 36The NKF runs the only UK Helpline dedicated to kidney patients, with over 200 unique and regularly updated information leaflets and two fully trained, experienced advisers providing a 5 day a week service to kidney patients, carers and healthcare professionals.The NKF Helpline is open from 9am until 5pm Monday to Friday on 0800 169 09 36 e: [email protected]

If you want to raise funds for the NKF, plan an event, make a donation to the NKF or discuss leaving a legacy to the NKF please contact Pete Revell (NKF Head of Fundraising).

T: 01263 722287e: [email protected]

KIDNEY PATIENTS UK KIDNEY PATIENTS UK KIDNEY PATIENTS UK

NKF would like to thank the following for theircontinued sponsorship of Kidney Life:

Abbvie Baxter Mologic Renal Services Amgen Chiesi Novartis SandozAstellas Fresenius NXStage SanofiB Braun Avitum Kimal Quanta

HELPLINE 0800 169 09 36www.kidney.org.uk

NKF OfficersChairman David Marshall SAKATreasurer Michael (Bud) Abbott Glocestershire KPASecretary Tracey Sinclair Wessex KPAChief Executive Timothy Statham OBEPresident Ken TuplingPatrons Lawrence Keogh and Nina WadiaNKF Officers and Executive members do usually belong to a KPA, but offer their services to NKF as individuals. As such NKF recognizes that views expressed by its Officers and Executive members are expressed as individuals and do not necessarily represent the views of their KPA.

PagePageIf you are reading this issue of Kidney Life and do not already receive your own free of charge Kidney Life

magazine but would like to do so, please get in touch with us - address details below – and we will arrange

for it to be delivered to you at your home address. Together we CAN.

Have you moved? Please remember to let us know here at NKF HQ if you have moved recently so that we

may update our records and ensure your issue of Kidney Life is going to the correct address.

If you require a larger print or audio version of the issue, these are available by contacting the NKF Helpline on 0800 169 09 36

Calls to the NKF Helpline are free of chargeHELPLINE 0800 169 09 36

All CALLS to the NKF Helpline are FREE of charge

04 NKF KPA Day 201805 Important Action06 Dialysis transport07 Drop in living donation08 Cover story11 Altruistic Donation12 3 Kidney bike challenge13 1st class graduate14 Happy Holidays19 Lithium in tap water20 Fundraising

NKF OFFICERS

Chairman David Marshall SAKA

Treasurer Michael (Bud) Abbott Gloucestershire KPA

Secretary Tracey Sinclair Wessex KPA

Chief Executive Timothy Statham OBE

President Ken Tupling

Patrons Lawrence Keogh and Nina Wadia

NKF Officers and Executive members do usually belong to a KPA, but offer their services to NKF as individuals. As such NKF recognises that views expressed by its Officers and Executive members are expressed as individuals and do not necessarily represent the views of their KPA.

www.kidney.org.uk


IN T

HIS

IS

SU

Ep16 p22

Meet our NEW EditorWe are delighted to announce the appointment of our new editor Sumaya Masood, who will edit her first issue in summer. Sumaya is a transplant patient who resides in Dunfermline.If you would like to contribute to future issues of Kidney Life, Sumaya would love to hear from you.Please send your stories to: [email protected]

CONTENTS

If you are reading this issue of Kidney Life and do not already receive your own free of charge Kidney Life magazine but would like to do so, please get in touch with us – address details below – and we will arrange for it to be delivered to you at your home address. Together we CAN.

Message from the ChairmanBy the time you read this magazine, hopefully you will have seen the first signs of spring. It’s a new start of a new season and a crucial year for the future of NKF.Not only will you see changes in Kidney Life, but also this year we will appoint a new Chief Executive Officer (CEO). It’s going to be a challenge for all involved, but we will start a new era after Tim retires at the end of 2018. Tim has been at the helm of the NKF for 20 years and has provided excellent stewardship of the Executive Committee whilst continuing his CEO duties for the NKF.Also, you will see some very important work the NKF has been undertaking over the past year and a Living Donor Transplant Manifesto has been published, we must thank our Life Vice President, Kirit Modi for his dedication. We will of course be monitoring events as they unfurl in the renal world and take the necessary action on behalf of kidney patients in the UK. On behalf of us all at the NKF, we hope you enjoy a happy and healthy as possible 2018.

David LawsonChasing the

Albatross













15 21
















Calls to the NKF Helpline are free of charge













15 21
















Calls to the NKF Helpline are free of charge

Spring 2018


NKF KPA Day 2018 The next KPA day including AGM and Council

meetings will be held at The Glebe Hotel, Warwick on Saturday 7th April. This annual event has proved to be both rewarding and productive. There is no charge to attend this event and lunch is on us provided you have registered to attend. However, KPAs will need to fund any travel expenses incurred by their own representatives attending.The day will start at 10.15am and finish at 4pm and will run on similar lines to previous years. During the AGM the NKF Executive Committee will be elected. KPAs will have received the NKF Executive Committee nomination papers already and for those interested in becoming a member of the NKF Executive, a completed

form needs to be with NKF HQ by no later than 23rd February. If you would like to become a member of the NKF Executive Committee, please ask your KPA secretary for a nomination form. For more details on what your commitment would be as a member of the NKF Executive please contact Andrea Brown at NKF Head Quarters ([email protected]) who will be happy to advise you. We would love to have you on board!If your KPA would like to speak at KPA day about what your KPA does, then please contact: [email protected] you would like to register to attend the day, please call 01909 544999.The Glebe Hotel, Church Street, Barford, Warwick CV35 8BS

I like to hold a bi annual coffee morning or afternoon tea for my future, current and past patients and we had a surprise visit from Father Christmas at our pre Christmas get together in Woburn Sands on Wednesday 22nd November.Working with Peritoneal Dialysis (PD) patients we nurses are very privileged to get to know our patients very well in a setting away from the hospital. I have worked in PD for 20 years and I continue to learn things from my patients, so I try to facilitate the opportunity for patients to help each other by bringing them together in an informal setting to share their experiences and stories.The people who attend these gatherings are made up of people who have chosen to do PD when they need to start dialysis, current PD patients, patients who have been transplanted but were on PD or patients who have been on PD and transferred to HD, either at home or in centre. The relatives of the patients are also welcomed.

Father Christmas not only produced a mass of mince pies from his present sack but also a pack of three pigs kidneys and two onions! Not quite the kidneys that some of the people who were present were waiting for. Unknown to many of the people there Father Christmas is in fact one of my current patients on Peritoneal Dialysis and he finds it remarkably difficult to fit his PD into his life at this time of year!!

News & Events

The Glebe Hotel, Warwick

Santa popped in for a chat and a mince pie (obviously)

A visit from Father ChristmasBy Trish Lewis, Deputy Sister, Peritoneal Dialysis, Milton Keynes Satellite Unit

HELPLINE 0800 169 0936 | www.kidney.org.uk | Spring 2018 | 5

Spring 2018

Holiday with TrustN O R F O L K D I A L Y S I S A T W E L L S C O M M U N I T Y H O S P T I A L T R U S T

F r e e W i F i • I n d i v i d u a l T V • R e f r e s h m e n t s • F r e e P a r k i n g • F r i e n d l y S t a f f

CQ C A c c r e d i t e d • O p e n M o n – S a t • F r e s e n i u s M e d i c a l C a r e 5 0 0 8 s D i a l y s i s m a c h i n e

t : 01328 713179 w : n o r f o l kd i a l y s i s . co m e : i n f o@ n o r f o l kd i a l y s i s . co m

S i t u a t e d i n We l l s - n e x t - t h e - S e a Tr e a t m e n t c o s t s c o v e r e d b y N H S E n g l a n d

The regulations on data protection are changing with effect from 25th May 2018. So that you continue to receive your copy of Kidney Life magazine and our monthly newsletter

Further details about the regulations can be found on the Information Commissioner’s Office (ICO) website www.ico.org.uk/for-the-public The NKF issue a monthly newsletter which is circulated by email only. If you are interested in receiving a copy of this, please complete your email address on the consent form and indicate that you wish to receive the In Touch newsletter.

You may withdraw your consent at any time by either writing to the NKF, The Point, Coach Road, Shireoaks, Worksop,

Nottinghamshire, S81 8BW or contacting us by telephone on 01909 544999.The GDPR consent form is enclosed with your magazine together with a pre-paid envelope for your convenience. You may include your draw tickets in the same envelope.If you wish to discuss this, please contact the NKF on

01909 544 999 where a member of staff will be happy to answer your questions. National Kidney FederationRegistered Office: The Point, Coach Road, Shireoaks, Worksop, Nottinghamshire S81 8BW

Telephone: 01909 544999 Fax: 01909 481723Email: [email protected] Web: www.kidney.org.uk Helpline: 0800 169 09 36Registrations: Charity No: 1106735 Company No: 5272349 Registered in England & Wales Give as You Earn contributions no: CAF GY511

IMPORTANT INFORMATIONTo comply with the new General Data Protection Regulations (GDPR) the National Kidney Federation (NKF) requires your consent to contact you on or after the 25th May 2018.To continue to receive communication from the NKF please complete the form below and return in the pre-paid

envelope provided.

---------------------------------------------------------------------------------------------------------------------------------------------------------------- I consent to the NKF contacting me by post ☐ I consent to the NKF contacting me by telephone☐ I consent to the NKF contacting me by email☐ I consent to receiving Fundraising items in Kidney Life – such as draw tickets ☐

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mails Kidney Life on behalf of NKF and the KPA to which I am registered with, if any). Signed …………………………………………………………………………… Date ……………………………………..

KIDNEY PATIENTS UK

57559 NKF GDPR Consent Form - KL.indd 1

03/01/2018 14:49

IMPORTANT!ACTION REQUIRED BY YOU

you MUST complete and return your mailing preferences using the GDPR Consent form insert. Please use the pre-paid envelope enclosed for your convenience.


Not Just the Incredibles ‘Not Just the Incredibles’, is an artistic research project that explored the

everyday aspects of organ transplantation, has just completed its first phase. To mark this occasion they have published a booklet to share their findings, and a pdf version of this (as well as more information about the project) may be downloaded free from https://givingintogift.org/not-just-the-incredibles

NKF helped with the recruitment of participants for the project last year by posting information about the project on the NKF website. The researchers are looking for further participants to work with for the next phase of the project, which will see the creation of artworks.

Page 2

The planned actions have not yet been completed and we are continuing to work with renal consultants on the development of the assessment criteria for this specific group of patients to ensure it is clinically evidenced, robust and transparent to support clinicians and transport booking staff to correctly assess someone’s eligibility. As a result we have further extended the transition period to 15 January 2018 to allow completion of this important work. Once agreed this assessment process will be incorporated into our non-emergency patient transport policy. Our aim is to ensure equity for all people living in Cornwall that use non-emergency patient transport and as such we are also in discussion with Plymouth Hospitals NHS Trust. Please do not hesitate to contact me or my team if you would like more details. Yours sincerely

Dr Iain Chorlton NHS Kernow Chairman

01726 627800

[email protected]

www.kernowccg.nhs.uk

/nhskernow

Chair: Dr Iain Chorlton

Chief Officer: Jackie Pendleton

Head office:

Sedgemoor Centre, Priory Road, St Austell,

Cornwall PL25 5AS

Sedgemoor Centre

St Austell

PL25 5AS

Tel: 01726 627671

Email: [email protected]

5th December 2017

Dear colleague

I wrote to you in November to update you on non-emergency patient transport and would like to take

the opportunity to update you further.

On 5 October, representatives from NHS Kernow, including the Chief Officer Jackie Pendleton and

myself Dr Iain Chorlton, Chairman; a representative from Kidney Care UK; St Austell MP Steve

Double, and members of the hospital’s renal team including renal consultant Paul Johnston, met to

discuss the impact of these changes on people who receive dialysis.

This was a constructive meeting and a number of actions were agreed:

During our consultation process, staff working at renal treatment centres repeatedly told us that

they did not want to be involved in making decisions about who should be given NEPTS. We

have agreed to work with Kidney Care UK and the hospital’s renal team to develop a draft

medical assessment for renal patients. This work will be clinically led by renal consultant Paul

Johnston and once agreed this assessment process will be incorporated into the NHS Kernow

non-emergency patient transport policy.

Concerns were raised for people who do not receive pension credits and could be regarded as

‘well off’ and as such would have to pay for their transport. It was felt that due to the frequency

of travel the cost burden to this group could be significant. NHS Kernow is considering this

point.

The renal team will also work with the hospital’s central booking office to ensure that any

queries or bookings for renal dialysis patients would be referred back to them.

As mentioned in our previous correspondence, the hospital trust applied a four week extension to the

implementation of this policy whilst this work is undertaken. Of the 161 dialysis people receiving

dialysis at Royal Cornwall Hospital at that time, we were advised that around 77 did not qualify for

NEPTS on financial grounds. Most of the remaining patients would likely qualify on medical grounds

and we are continuing to work with renal consultants and teams from the CCG to establish medical

criteria to assess someone’s eligibility.

News & Events

The Kernow Decision on Dialysis Transport Charging

NKF has now been shown a letter from Dr Iain Chorlton NHS Kernow Chairman, which sets out the revised decisions being made by the CCG following the outcry from patients (supported by the NKF and the All Party Parliamentary Kidney Group) to the threat of charging for transport to and from lifesaving dialysis treatment. Whilst the NKF is pleased that for patients in Kernow the threat of charging has been mainly lifted, we remain saddened that the principle of ‘free at the point of delivery’ for health care patients has been lost in favour of individual assessment. Overall NKF believes this to be a retrograde step.

A copy of the letter shown here is also available to view via the NKF website https://www.kidney.org.uk/home/news-2/kernow-decision-on-dialysis-transport-charging/


Drop in living donation raised with Members of Parliament

Members of the All Party Parliamentary Kidney Group (APPKG) held a Summit on 22nd November 2017 to find out the reasons for the drop in the number of living kidney donor transplants in the UK. The numbers have gone down from 1148 in 2013/14 to 1043 in 2016/17, a drop of 9%. The APPKG invited senior staff from the Department of Health, NHS England, NHS Blood and Transplant (NHSBT), Chair of the Transplant 2020 Oversight Group, a consultant nephrologist and the NKF to speak at the Summit. A wide range of issues were discussed and ways in which the trend can be reversed were explored. A number of reasons including the following were considered: • Unexplained variation in the number of living donor transplants by

transplant centres• Some hospitals do not employ sufficient living donor coordinators• Making the assessment process for the potential donor quicker and easierThe APPKG also considered the living kidney transplant activity in 2016/17 at each of the 23 transplant centres which was published for the first time by NHSBT. We hope that this information will be helpful for Kidney Patients Associations and others in raising this issue locally. NHSBT have plans to publish this information by referral centres as well this year.

Spring 2018

The APPKG agreed a Manifesto on living kidney donor transplantation in the UK, setting out recommendations for action. This was published in January 2018. The manifesto can be viewed on the NKF website www.kidney.org.uk

Target for 2020 is 26 pmp* National average 2016/17 is 16 pmp*

Adult Living donor kidney transplants (pmp) in the UK1 April 2016 – 31 March 2017

The photo shows Kirit Modi with Dr Sarah Fluck, consultant nephrologist and lead for living kidney donation at the Lister Hospital, in the middle and Sandra Cruikshank, Living Donor Co-ordinator at the Lister Hospital, following their meeting to discuss living kidney donation at the hospital.

(Photo of Kirit and two ladies if we need to use it to fill up space)

Drop In living donation raised with Members of Parliament

Members of the All Party Parliamentary Kidney Group (APPKG) held a Summit on 22nd November 2017 to find out the reasons for the drop in the number of living kidney donor transplants in the UK. The numbers have gone down from 1148 in 2013/14 to 1043 in 2016/17, a drop of 9%.

The APPKG invited senior staff from the Department of Health in England, NHS England, NHS Blood and Transplant, Chair of the Transplant 2020 Oversight Group, a consultant nephrologist and the NKF to speak at the Summit.

A wide range of issues were discussed and ways in which the trend can be reversed were explored.

A number of reasons including the following were considered.

· Unexplained variation in the number of living donor transplants by transplant centres · Some hospitals do not employ sufficient living donor coordinators · Making the assessment process for the potential donor quicker and easier.

The APPKG also considered the living kidney transplant activity in 2016/17 at each of the 23 transplant centres published for the first time by NHSBT.

We hope that this information will be helpful for Kidney Patients Associations and others in raising this issue locally. NHSBT have plans to publish this information by referral centres as well this year.

The APPKG agreed that a Manifesto on living kidney donor transplantation in the UK, setting out recommendations for action, should be published in January 2018.

National average 2016/17 is 16 pmp

Target for 2020 is 26 pmp

* Per million of the population


Scott gave his best friend, Nicola the ultimate gift by donating his kidney to help transform her life.Nicola Rose, 39, was diagnosed with Chronic Kidney Disease (CKD) in January 2013. At the time she was at stage 1 at GFR 71, (which is the percentage of how your kidneys are working) the doctors told Nicola that her kidneys could last up to 10-20 years before she had to go on to dialysis or have a transplant. At first she was able to continue to live a relatively ordinary life but, over time, her kidney function declined and she became dependent on dialysis.In March 2015 her GFR had declined to 31 and she was at stage 3. The doctors said she could be lucky and still not need a transplant for another 5-10 years, but they asked if she needed a transplant could a family or friend be a donor? She said: “It was a very difficult time. You’re very much tied to the house and you feel like you’re just existing, not really living.”

When it became clear that a kidney transplant was her only option her best friend Scott Christian, who has known her since they met at work ten years ago, offered her one of his.

Scott, 31, of Carlton, was one of two people who offered to donate their kidneys to Nicola, but the only one who successfully completed the testing process.

Scott has seen Nicola go through so much and has always been by her side. Nicola said: “To be honest we are like brother and sister we are that close, we say we are brother and sister from another mother.”Nicola’s parents have both had Cancer so could not be considered as a donor and her sister, after a consultation at the hospital decided that at this time she couldn’t do it. Scott instantly offered to be tested. He didn’t even have to think twice about it. He said: “I would do it without any hesitation really. I wanted to see her better and back to the way she was. It was horrible to see her so poorly.”Scott called the hospital and got the ball rolling. At the same time another friend, Debbie, also offered to be tested. The hospital decided to go with Debbie first as she was in her 50’s and the way they think about it is, if Nicola needed another transplant in the future then Scott would still be available as he is a lot younger.Nicola said: “They are only allowed to test one person at a time due to costs” so in October 2015 they started testing Debbie. Throughout all the testing it was positive. In July 2016 Nicola had started dialysis as she was now Stage 5 with GRF 6. There was one final test which was in September 2016 and we were all hoping for good news, but unfortunately on 16th September Nicola received the bad news that it wasn’t going to happen due to Debbie having a duplex kidney on one side and on the other she had double arteries which makes her unable to donate. “Obviously we were devastated,” said Nicola.

News & Events

Best friend gives the ultimate gift by donating his kidney

HELPLINE 0845 601 02 09 | www.kidney.orguk | Spring 2018 | 9

Scott started being tested in October 2016. The testing consists of physical and mental testing. This also took 10 months, but on Wednesday 19th July, Scott called Nicola and told her that he’d received an email from the hospital to confirm that he COULD be her donor. Nicola said: “I was just speechless, even now it just feels like it’s so surreal. The best thing about it is that we are a 50% tissue match which is like having a kidney from my mum or dad, even a sibling may not be that much of a match.”

So after nearly 2 years of testing and a 1½ years on dialysis a date was set for the transplant... ...October 18th 2017.

The operations took place at Nottingham City Hospital and the pair, who describe themselves as “like brother and sister” are recovering well. Consultant Transplant Surgeon Sam Dutta, who performed the operation on Scott, said:“Friend to friend donations are rare but perhaps not as difficult as people may think. To donate a kidney to another person you only need to be fit and well and have two good working kidneys. You do not have to be a tissue match or have the same blood group. It is an excellent option when there are no suitable family members to donate a kidney.”

Nicola said: “It still feels very surreal not to have to be hooked up to dialysis every night. I can’t describe how it feels that Scott has been willing to do this. I will never be able to thank him enough.”The pair have even given the kidney a name. Scott said:

“We’ve called it Bertha. When Nicola sent me a birthday card she signed it from her, her cat and Bertha!”

Scott said: “Seeing the difference in her just emphasised why I wanted to do it. We have vowed that we are going to celebrate October 18th for the rest of our lives.”Mr Dutta added: “At Nottingham City Hospital we have been performing transplants across blood group barriers for many years with excellent results. Our Transplant Coordinators, Karen Stopper and Anne Theakstone work tirelessly to make such complex operations take place. Karen organised weeks of rigorous treatment on Nicola in preparation for the transplant, as directed by Consultant Nephrologist Dr Gavin McHaffie. The whole process of removing Scott’s kidney with a keyhole operation and attaching it into Nicola is a technically complex process with lots of surgical and medical challenges. I am pleased that it has gone smoothly. It is fantastic to see them both doing so well.”Nicola said: “I feel that I could never repay Scott for doing such a selfless thing for me, I will owe him my life. Scott is a very special person inside and out and everyone who meets him loves him. I’m just so happy that all those years ago we found each other, will be friends for life and this will only make us stronger, I am so lucky to have Scott in my world.”

Spring 2018

Best friends Nicola & Scott

Pre-op at Nottingham City Hospital

Photo kindly supplied by Nottingham University Hospital NHS Trust

Help us bring together millions of people across the world and unite with one powerful voice for kidney health awareness.

We are encouraging individuals and patient groups to work together with renal/transplant units in hospitals all over the UK, to support the day by organising an activity or event. The aim is to draw public attention to the importance of maintaining a healthy lifestyle to keep the kidneys healthy, what can be done to protect kidneys before disease strikes, and to assist patients who already have chronic kidney disease. Following the global theme, there will also be a focus on kidney disease and women’s health.

Ideas for activities and downloadable resources will be available at www.worldkidneyday.co.uk

Contact [email protected] to register your interest and apply for a support pack

Have your say on organ and tissue donation

We have launched a consultation about organ and tissue donation. This is because the government intends to change the organ donation system to an 'opt-out' system. This means people would be considered willing to be an organ donor after their death, unless they had ‘opted out’.

We want to find out what people think of how the changes to the system should be made, and what else they think the government needs to consider. Please tell us your views by responding to our consultation. https://engage.dh.gov.uk/organdonation/

Contact Us

Complete our web form or write to us at:

Ministerial Correspondence and Public Enquiries

Department of Health,

39 Victoria Street,

London SW1H 0EU

We want to find out what people think of how the changes to the system should be made, and what else they think the government needs to consider.

Please tell us your views by responding to our consultation.

https://engage.dh.gov.uk/organdonation/

Contact Us

Complete our web form or write to us at:

Ministerial Correspondence and Public EnquiriesDepartment of Health, 39 Victoria Street, London SW1H 0EU


Non-directed Living Kidney Donation (Altruistic Donation)

Mike, a self-confessed hypochondriac in his seventh decade, sits in alert anticipation. His bright face partially framed with a neat, grey, chin strap beard, giving the impression of a seafarer of long ago. He’s keen to talk and holds a piece of paper, notes from his diary, as an ‘aide memoire’.

In 2009 Mike donated one of his kidney’s, not to a relative or friend but purely as an altruistic gesture for the benefit of a complete stranger. Amazing for someone who says he doesn’t like people. Why did he do this? “Why not” he says. “I’ve got two and I only need one, I’d rather do that than other things, such as working in a soup kitchen or other things.” He’s folding the piece of paper in his hands as he speaks, more contemplative than nervous. When he begins to talk about a group he attended, of people who had received a kidney, he becomes very emotional and almost starts to cry; raising the hard, now rolled paper to his eyes to try to stop the tears. “I’m sorry”, he says quietly, takes a few seconds to regain his composure and continues his story. Some publicity he saw prompted him to think about donation and he subsequently contacted his GP in October 2008 to find out how to go about it. From this initial approach to the actual donation took over a year. Altruistic kidney donation only became legal in Britain in 2006. Before this if you wanted to donate to someone who was not a relative you had to apply to the ‘Unrelated Living Transplants Regulatory Authority’. As one member of that authority has written “Our remit was precisely to reassure ourselves that there was ‘something in it for the donor”… if we couldn’t see what the donor would gain from the activity we had to consider the ‘sincerity’ of their motives.Amendments to this legislation were made, because of the desperate need for donors. 5,686 adults on the kidney transplant waiting list in March 2015 (latest figures), some waiting more than seven years and many die whilst waiting. Up to the end of December 2016, 548 non- directed kidney donations had taken place. There was a peak of 118 in 2013, reducing to 66 in 2016 the lowest since 2012.“Things were very thorough, there were lots of tests before, which was very reassuring as I’m such a hypochondriac,” Mike says in a matter of fact tone. “There was also an in depth psychological assessment too. Things were explained at every step and I was constantly told that I could back out at any point with no recriminations.” He gazes ahead as if reliving this experience.The Kidneys, two multifunctional powerhouses, masterpieces of architectural engineering consisting of millions of filtering units – nephrons, through which 1.2 litres of blood per minute flows. A complex process of cleansing and filtering of waste products, whilst maintaining the balance of water, salts and acids, essential to life, takes place.

In addition they contribute to the regulation of blood pressure and also to the development of red blood cells.It’s no surprise then, to learn that the kidneys are very susceptible to disease and malfunction. Due to Infections – viruses, bacteria or obstruction and occasionally from acute catastrophic damage from the ingestion of poisonous substances. Nicholas Evans, author of ‘The Horse Whisperer’ discovered this to his horror, on a visit to relatives in Scotland. Whilst walking early one morning, he discovered what he described as a “dew fresh crop of woodland mushrooms”. Believing they were Chanterelles and Ceps or Porcini, he picked and cooked them, the mushrooms were in fact, ‘Deadly Webcap’ or ‘Cortinarius Speciosissmus’. The next day he, his wife and brother-in-law developed acute kidney failure, requiring long term dialysis. Eventually he received a donated kidney from his daughter. What type of person becomes a non-directed, ‘altruistic’ donor? Most people can understand the donation of a life giving organ to a family member or close friend but question the motivation of this to someone totally unknown. It seems that Mike would fit the typical profile of an altruistic kidney donor. Over 50, a long-time blood donor, financially secure, no children and with a strong sense of duty. He sees it as a ‘moral obligation’ and says “It’s much easier to give to a stranger than someone you know” and feels “It would alter the relationship if given to a family member”. He’s against publicity, feeling it would encourage people who “weren’t right”, “people who had family would offer and this could cause problems”.The operation to remove his left kidney was performed through keyhole surgery and was very straightforward. Unfortunately, he developed severe pneumonia post-operatively, so his recovery was longer than expected but he describes himself now as in “perfect health” and his annual post-operative checks have been fine.

Kidney transplantation has been around now for some time. The first successful transplant taking place in the USA in 1954 and in Britain in 1960.

By Denise Burgin MSc, Denise has a background in nurse education and wrote this as part of a creative non-fiction writing course at Edinburgh University.

Spring 2018


David Marshall is Managing Director of a refrigeration company, Chair of Sheffield Area Kidney Association (SAKA), Chair of the National Kidney Federation (NKF) and he also assists his wife in her business activities as a florist in Sheffield, Valerie of Dore.At the age of 7 he was diagnosed with Diabetes type 1. During his 30’s a nasty little thing called kidney disease tried to stop him in his tracks, but as you will read it takes a lot to stop David doing anything once he is determined. In December 2009, he received the gift of life from his wife Jo, who donated him a kidney, transforming both of their lives back to normality. David continues his story: ‘’As I am always busy I don’t tend to get involved in too many challenges. My biggest challenge to date was losing weight. Since I had my transplant I steadily gained weight, everyone blames steroids but I just blamed food. I think once you get your transplant you become content and enjoy life more, enjoying life for me meant eating good food with a lovely white number from Australia.”My daughter Sam told Jo and me at Christmas she was getting married to her partner Mark and then she told us it would be abroad in Cape Verde. I looked in the mirror and thought OMG I need to get “that” sorted.So in the space of 10 months, before jetting off I had lost just short of 6 stone. I then started a bit of light jogging and completed a couple of 5k runs every week. The problem with running is that it can be particularly bad for your knees with the impact, and wearing the wrong footwear did not help. By now my weight had settled. I kept looking at challenges on the NKF website and thought maybe it’s time I did something a little different. I did not want to run long distance due to the problems it caused my knees and walking seemed too easy, (I had completed a 21 mile walk without any issues previously) so I decided I would go on a bike ride!London to Paris appealed to me as I love France; it’s our second home. So I made a few enquiries and before I knew it I had accepted the challenge with Pete Revell the Fundraising Manager at the NKF.

So that’s it, I am off to Paris.David is booked to participate in the July London to Paris cycle ride and you have to take your hat off to David – this is no small cycle ride, bearing in mind David has Diabetes type 1 and is a transplant patient.

Day 1 – Registration for challenge early morning in Croydon followed by cycling for 7am through Kent to Dover. Ferry to Calais. Distance – 86 miles.Day 2 – Start at 8:00am, Cycle through the French countryside with sweeping roads surrounded by arable fields, incorporating long and gradual climbs with magnificent views and finally a gentle descent into the medieval town of Arras, arriving at 5pm.Day 3 – Cycle from Arras to Compiègne passing numerous WWI memorials and monuments through the Region of the Somme. Distance – 74 miles.Day 4 – Start at 7am and cycle through Compiegne Forest dappled with morning sunlight, stopping off at the beautiful village of Ermenonville. Cycle through the centre of Paris and experience its hustle and bustle. Pedal from the Louvre, up the Champs Elysees via the Arc de Triomph to the finishing post.David will be cycling 308 miles over four days, so pre training needs to be in place and David started back in August 2017 and soon realised a new bike was in order. Tricky Charlie Roadlice arrived, (his bike) followed by cycle clothes and lots more. David decided to set up a web page of his own and record a daily/weekly record of the training, his diet and the joys of being a target on the roads around Sheffield. https://threekidneyking.com David is doing the London to Paris cycle ride for a few reasons, one is to try and raise as much money as possible for other kidney patients through his JustGiving page http://www.justgiving.com/davidmarshall-NKF, the other reason he is taking part is to prove that even though he has Diabetes type 1 and a kidney patient it does not stop him doing things he wants to do and being given the gift of life through a transplant really does mean that he wants to live that life!David is looking for people to sponsor him through his JustGiving page http://www.justgiving.com/davidmarshall-NKF but is also looking for corporate sponsors to support his ride with branding opportunities. Places are available in 2018 and 2019 to take part in the London to Paris cycle rides. Please visit the NKF web site at www.kidney.org.uk/fundraising if you have any questions please call Pete Revell on 01263 722287 or email [email protected]

The first altruistic, non-directed kidney transplant took place in 2007, with five more following quickly that year. Many believed that further donors wouldn’t be forthcoming but so far over 500 people have now donated a kidney to a stranger. Interestingly, the number of people who donate to a stranger in Britain is three times higher than in the United States.Demand sadly still outweighs supply, so there is great excitement generated by the news that 3D bio printing of organs will be possible in the not too distant future. Bio printing originated in the early 2000’s, when it was discovered that living cells could be sprayed through the nozzles of inkjet printers without damaging them.

Researchers at the Wyss Institute, Harvard, USA, have now advanced bio printing to the point of being able to fabricate a functional subunit of a kidney – a nephron. Donors are not allowed to know the identity of the recipient before or after they give a kidney, Mike thinks that the person who received his kidney lived in Bristol. I tell him that a friend’s stepdaughter received a kidney from an altruistic donor in 2009 after years of dialysis and she now has a 2 year old little boy. A huge smile lights up his face, surprising I feel, for someone who says he “doesn’t like people.”

Three Kidneys Travel from London to Paris on a Bike!

News & Events


Open University graduate from Jedburgh gains first class degree despite huge challenges...Mandy Murray, 55, was among 664 students who had their degrees conferred at the Open University (OU) degree ceremony at Edinburgh’s Usher Hall on Saturday 28 October 2017.Mandy, a mother of two from Jedburgh, received her Bachelor of Arts (Honours) degree in Humanities with Literature. Having been a project manager at Tesco, she had to give up her job due to health problems. A kidney transplant and a long period of hospitalisation took its toll on her and her family and she found herself isolated at home until she started studying with The OU.She graduated with a first class degree and has already signed up for another course.Mandy Murray, BA (Honours) Humanities with Literature, said:

“I pretty much lost the confidence to even leave the house, becoming ‘institutionalised’ owing to my lengthy stay in hospital.”

“I used The OU website and the brilliant OU support team online to build a plan of courses to achieve a Bachelor of Arts Honours degree.

My kitchen became my university. We have a kind of breakfast area and I commandeered the table and had all my books out.”

“When I got my results, a first class Honours Degree, I did shed a tear. I stand a little taller now, my confidence is still growing. My kids and husband are so proud.”

“I was dragged by the hair through my courses, with support and challenge by some amazing tutors. They showed a confidence in me I didn’t have in myself.I’ve now started my postgraduate degree. Bring on round two!”Susan Stewart, Director of The OU in Scotland, said:“Our students come from all kinds of backgrounds and from all over Scotland and they study for lots of different reasons, but what they all have in common is a fierce desire to fit learning into their busy lives.Mandy is a fantastic example of that commitment and dedication and I’m extremely proud of her and everyone else that graduated with The Open University in Scotland today.”

Gaining a huge DEGREE of confidence

Spring 2018


My name is Michael Newton and although I have known for many years that ultimately I would need Dialysis, it came as a shock when I realised the implications of just how it would take over both myself and my families lives when I actually started Dialysis in May 2017.Apart from the Dialysis 3 times a week what really struck me was my apprehension to the thought of travelling abroad.I decided to learn as much as possible about just how I could maintain a good quality of life, not only for myself but also for my wife Moira who has supported me through thick and thin and decided to join the NKF.I have benefitted from the expert advice given by their Helpline and also some of the interesting articles in their newsletter, which showed me that it is possible to live a normal lifestyle when on Dialysis.

‘I noticed an advert in the NKF magazine offering free holidays in Sicily with Dialysis Mucaria.’

This seemed to be too good to be true, so I emailed them and asked for further information.Within a few hours I received a phone call from the lovely and helpful Rosaria who told me that:• They provide Free Dialysis in their various units to

those who have an EHIC Card• They would provide a Free Taxi service to take me

and bring me home from my Dialysis sessions• They would contribute 100 Euros to the cost of

my flight• They would provide free accommodation for me in

one of their well appointed self-catering apartments• They would only charge 15 Euros a day for my wife’s

accommodation with me• They would arrange a driver to collect us from and

return us to the airport

News & Events

Holidaying in Sicily with Dialysis Mucaria Michael Newton, London


• They would arrange for a hire car to be delivered to me• They also arrange outings to places of interest and

Pizza Evenings (Great fun) and will advise on local attractions and places of interest.

I was still cynical so I asked her to give me the contact details of others who had been to Sicily with them who I duly called. I received glowing reports so we decided to go to Sicily.We went for two weeks in October last year and I was astounded by the efficiency and care given at both the Dialysis Unit and the support, advice and assistance given to Moira and myself.Trapani and the area around has a rich and varied history, located in a beautiful seaside setting with a large choice of restaurants and shops. There are so many places of beauty and interest within a relatively short distance of Trapani and I cannot speak highly enough of the professionalism, genuine care and service that we experienced.I would highly recommend this experience to others, and Moira and I look forward to returning next year.

Spring 2018

“I would highly recommend this experience to others, and Moira and I look forward to returning next year.”

Michael relaxing in the Sicilian sunshine

Enjoying the sights of Trapani between treatments


Diabetes UK has awarded long-standing member, Vic Hill, with a Robert Lawrence medal (Diabetes Medals) in recognition of him living with diabetes for sixty years. In August this year, Vic received his medal, along with an achievement letter from Diabetes UK.Vic was diagnosed with Type One diabetes in August 1957, at the age of twelve. Following a successful career as a Tyre Sales Manager, Vic credits staying ‘fit and active’, controlling his diet with grateful thanks to his loving wife Val and ‘keeping his blood sugars in a tight band’ as the mainstays behind his ability to manage the condition so successfully. He wholeheartedly praises the excellent and professional support from the NHS, his local GPs located in rural Suffolk at Hartest and Glemsford, West Suffolk Hospital and the renowned Addenbrooke’s in Cambridge. Furthermore, the love and strength, provided by Val and their two sons, Andrew & Stuart.In addition to Diabetes, after three years of renal dialysis, Vic had a kidney transplant in 2008. Since that time, he has used an Insulin Pump which he describes as ‘a revelation.’

‘Sidney the Kidney’ was eleven years old in November 2017

Vic has been super impressed with the technological innovations and advances that have been made in the control of diabetes in the past few years. He regularly uses a continuous blood glucose meter to monitor his sugar levels, and eagerly awaits the next installment of practical science fiction in our lifetime!

Honoured

Vic Hill receives the Robert Lawrence medal

Vic’s awarded for living with diabetes for 60 years


KIDNEY PATIENTS UK

WE NEED YOUR SUPPORT

We realise not everyone can fundraise by jumping out of a plane or walking up a mountain...

Below you will find other ways of supporting the great work done by NKF.

To all those of you who are giving, or going to give, all the staff at NKF would like

say THANK YOU...

You really are making a difference!

£20 a monthWill help with the ever increasing printing costs to enable our Helpline to continue to produce, and distribute, patient information leaflets. There are over 150 titles in the Kidney Matters series which are printed ‘in-house’ and distributed, free of charge, to all patients calling our Helpline telephone 0845 601 02 09.

£10 a monthWill help towards the ever increasing postage costs incurred in sending out information to patients, and renal units nationwide.

£5 a monthWill help the NKF to spread the word about the importance of Organ Donation.

£2 a monthPays for your Kidney Life magazine.

Just send us your name and address (or simply fill in the form overleaf) and post it, together with your donation to NKF at: NKF (National Kidney Federation), The Point, Coach Road, Shireoaks, Worksop, Notts S81 8BW.

An annual subscription of £20 entitles you to be classed as a ‘Friend for Life.’

All donations for whatever amount will be acknowledged. Note: Remember to notify us if you no longer pay an amount of income tax or capital gains tax equal to the tax we reclaim on your donations (28p for every £1 you give). Also if you are a UK taxpayer, and complete the Gift Aid Declaration, overleaf, NKF will be able to reclaim the tax on all donations you make to NKF.

A will is a legal document, so it’s best to get the advice of a solicitor to make your instructions legally valid. To find a solicitor you can look in the Solicitors Regional Directory which is available in your local library.

You will find more information to help you make your will at:www.solicitors-online.com www.make-a-will.org.uk The NKF Helpline on 0800 169 09 36 can give you advice on how to include NKF in your will.

Online at www.kidney.org.uk Book or pay here using a credit or debit card

Place your order using a Credit or Debit Card by calling 01909 544999

Pay by Direct Debit. Fill in the direct debit form overleaf and return to us (details overleaf)

Send a cheque, made payable to ‘the National Kidney Federation’ (address overleaf)

There are now FOUR ways to pay NKF...

01909 544999

together we can

Support NKF each monthA regular donation from you (if you can afford it) will help NKF to reach each and every kidney patient in the UK below is an indication of how your monthly contribution can make so much difference.

Become a Friend for Life of NKFWhether you are a kidney patient yourself, a carer or just a friend who would like to support NKF in its work supporting kidney patients, please consider making an annual donation to the NKF.

Leave a Legacy to NKFOne way of helping NKF is to include a legacy to the charity in your will. More than two thirds of adults die without a valid will, which results in their estates being allocated according to the law, instead of according to their wishes.

18 | Spring 2018 | www.kidney.org.uk | HELPLINE 0800 169 0936 18 Autumn 2017 www.kidney.org.uk HELPLINE 0800 169 09 36

Here is my gift to help the work of theNational Kidney Federation

KIDNEY PATIENTS UK

Please return to: National Kidney Federation, The Point, Coach Road, Shireoaks, Worksop, S81 8BW

Charity No 1106735 Company No 5272349 Registered in England & Wales Office Ref No................

KIDNEY PATIENTS UK

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Instruction to your bankPlease pay National Kidney Federation Direct Debits from the account detailed in this Instruction subject to the safeguards assured by the Direct Debit Guarantee.NKF Bank details:Sort code: 306776 Account Number: 43986268

KIDNEY PATIENTS UK

HERE IS MY GIFT TO HELP THE WORK OF THE NATIONAL KIDNEY FEDERATION

DIRECT DEBIT INSTRUCTION

18 Autumn 2017 www.kidney.org.uk HELPLINE 0800 169 09 36


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Lithium in tap waterOne of our avid readers has alerted us to an article in The Times newspaper on Thursday 24th August 2017 by Chris Smyth, Health Editor. Mr Smyth suggests that ‘The findings raise the possibility that lithium could one day be added to drinking water to protect the brain in the same way as fluoride is added to protect teeth.’In a linked editorial John McGrath, of the University of Queensland, and Michael Berk, of the University of Melbourne added ‘That a relatively safe, simple, and cheap intervention (i.e. optimising lithium concentrations in the drinking water) could lead to the primary prevention of dementia is a tantalising prospect.’Our reader believes this to be incorrect saying ‘Lithium is known to be potentially toxic to kidneys.’For thirty years he was prescribed lithium carbonate for bipolar disorder. While it was undoubtedly efficacious for the purpose, as a side effect he says it killed his kidneys.The problem was first detected in 1992, when his lithium dose was 1600mg and creatinine level 88. In 1995 it was decided to reduce the dose progressively in order to control the damage. However his kidneys continued to decline, until finally in 2005, with his creatinine at 222 he was taken off lithium altogether. In September 2010, when it stood at 591, he began peritoneal dialysis, which ended with a wholly successful kidney transplant from his wife in July 2014.It is now officially recognised that the malfunction of his kidneys was entirely due to thirty years on lithium.David Smith, emeritus professor of pharmacology at the University of Oxford said ‘We should not be adding lithium salts to our tap water because we would not know what amount to use.’So with very good reason it gives our reader much concern about the proposal to include a quantity of lithium indiscriminately in the water supply. Whatever the benefits in terms of dementia, there will also be a statistical fraction of the population with vulnerable kidneys for whom this measure could be toxic, either because they already suffer from kidney disease, or who may be knowingly or otherwise at risk of it. The suggestion in the article that this will be ‘relatively safe’ strikes him as both ignorant and irresponsibly blinkered.

THE ARTICLE READ:

LITHIUM IN TAP WATER COULD LOWER DEMENTIA RISK

Chris Smyth, Health Editor, The Times, Thursday August 24 2017

People living in areas with high levels of lithium in tap water are 17 per cent less likely to get dementia, according to a large study that suggests the naturally occurring metal could help to prevent mental decline.

The findings raise the possibility that lithium could one day be added to drinking water to protect the brain in the same way as fluoride is added to protect teeth.

Lithium is already widely available as a psychiatric drug and experts said the findings suggested that it could be used as a treatment to prevent dementia if further trails proved successful. Lithium is known to affect neurological signalling and has long been used as a treatment for conditions such as bipolar disorder. It occurs naturally in water and previous studies have found lower suicide rates in areas with higher levels.

Scientist studied 74,000 older people with dementia and 734,000 without across Denmark, comparing illness rates with lithium levels, which were 15 times higher in some areas.

Scientists at the University of Copenhagen found that dementia rates increased slightly with low levels of lithium before falling sharply above 10 micrograms per litre. At 15 to 27 micrograms/1, dementia rates were 17 per cent lower than for 2-5 micrograms/1, according to results published in JAMA psychiatry.

The authors acknowledged that other factors could explain the results, including worse healthcare in the remoter areas that had less lithium in water, but they said it was plausible that tiny amounts in tap water could have a significant effect on dementia.

In a linked editorial John McGrath, of the University of Queensland, and Michael Berk, of the University of Melbourne, wrote: “In the spirit of alchemy, could we convert lithium, a simple metal used as a mood stabiliser, into a golden public health intervention that could prevent dementia?”

They added: “That a relatively safe, simple, and cheap intervention (i.e. optimising lithium concentrations in the drinking water) could lead to the primary prevention of dementia is a tantalising prospect.”

David Smith, emeritus professor of pharmacology at the University of Oxford, said the findings tallied with MRI studies showing that lithium salts increased the volume of areas of the brain involved in Alzheimer’s. However, he added: “We should not be adding lithium salts to our tap water because we would not know what amount to use.”

David Reynolds, chief scientific officer at Alzheimer’s Research UK, said: “It is potentially exciting that low doses of a drug already available in the clinic could help limit the number of people who develop dementia.”

Rob Howard, professor of old-aid psychiatry at University College London, said: “These results represent another important piece of evidence for lithium’s potential as a treatment for Alzheimer’s disease. We now need clinical trials of lithium in patients with Alzheimer’s disease to determine once and for all whether this cheap and well-tolerated element can slow dementia progression.”

Disclaimer: This is not the view of the NKF. It is the view of one of our readers.

The Times: HEALTH


Choctober 2017Back in October we had Choctober. 2017 turned out to be the best year so far with over 70 participants plus various schools joined in. Over £10,000 was raised and if you were one of those who gave up chocolate for a month thank you so much for your support.WE LOOK FORWARD TO YOU JOINING US AGAIN THIS YEAR.

Thank you to all who took part in our winter draw and supporting the NKF and kidney patients in the UK.

DRAW TICKETS ARE AVAILABLE FOR THIS SPRING’S DRAW. If you haven’t received them with this issue of Kidney Life or you require more, please contact NKF on 01909 544999 where a member of staff will be happy to post you some out.

NKF winter Draw 2017We are pleased to announce the winners of this winter’s Christmas draw1st Prize £1,750 Mr M Emmerson Ticket Number 3149792nd Prize £1,250 Mrs J Birch Ticket Number 0406463rd Prize £300 Mrs J Osborne Ticket Number 0305404th Prize £200 Miss D Arnell Ticket Number 0108295th Prize £100 Mrs L Todd Ticket Number 2247706th Prize £50 Mr M Rumeckles Ticket Number 067144

CONGRATULATIONS TO ALL OUR LUCKY WINNERS.

FUNDRAISING

FU

ND

RA

ISIN

G

KIDNEY PATIENTS UK

GET YOUR PARTY FROCKS READYOn Saturday April 14th we are holding the first NKF Charity Ball at the very popular Ye Olde Bell, Barnby Moor, Retford. The night starts at 7.30pm with pre drinks followed by a lovely 3 course meal – entertainment from one of Nottinghamshire’s top party bands The Simon Faulkner Band and we also have a charity auction with lots of money can’t buy items. Come along and have a fantastic night and raise some money for the charity – Tickets are £37.50 each or a table of ten for £350 – for more details call 01909 44999.

KIDNEY PATIENTS UK

Tickets

£37.50pp

Discount for

groups• Fizz on Arrival • Prize Draw

• 3 Course Dinner • Charity Auction

Dress Code: Evening Wear / Black Tie

Book early to avoid disappointment on 01909 544999

Entertainment fromThe Simon Faulkner Band

Charity BallCharity Ball

NKF (National Kidney Federation) The Point, Coach Road, Shireoaks, Worksop, Notts S81 8BW.Registered Charity No: 1106735. Company No: 5272349.

Ye Olde Bell Hotel & SpaBarnby Moor, Retford

Saturday 14th April 20187.30pm, Carriages 1.00am

18 Autumn 2017 www.kidney.org.uk HELPLINE 0800 169 09 36


KIDNEY PATIENTS UK



KIDNEY PATIENTS UK


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Yes PleaseDate: ........................




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Choc

tober 2017


FUNDRAISING

Thank you to everyone that supported the NKF last year. Here we are now in 2018 and it’s that time again to think about what you can do to support kidney patients.This year the charity have more events that ever to offer. If you are into running – the NKF now offer entry to marathons around the world, half marathons, fun runs and tough mudder events.

WALKINGFor those into walking you still have a great selection, from Hadrian’s Wall, Cotswold Way Challenge, London to Brighton, Thames Bridges Walk and our most popular event Ben Nevis which is more than just a walk , it’s a whole weekend from being picked up from the rail station, accommodation, meals, guide to the top of Ben Nevis and a life time memory of a fantastic achievement.

For details of any events please visit the NKF website www.kidney.org.uk/fundraising if you have any questions or just fancy organising your own event and need help and advice please call 01263 722287 or email [email protected]

Supporting

the NKF in 2018

Maybe you would like to do some armchair fundraising

and even better be in with a chance of winning

£25,000? From just £1 a week, for more details http://www.theweatherlottery.com/

charitiesHomepage.php?client=NKFUK or call 01263 722287 and ask for a form

to be sent out.


David Lawson is the NKF financial adviser and it wasn’t until recently we found out he had a kidney connection.

David’s eldest daughter Rebecca now has only one kidney after suffering from kidney problems for many years. Despite the challenges she faced as a youngster Rebecca will be having her first child, a daughter and David’s first grandchild, soon.It is in response to Rebecca’s good news that he is raising funds for the NKF, lots of people do a sponsored walk, maybe do a skydive but not David, he is sailing 12,500 miles across the oceans.Here is David’s incredible story, written by David himself “Back in 1971 my Dad took part in Operation Seafarer. The project was organised by the newly formed Seabird Group aboard the sailing yacht Aracan. The objective was to undertake the first comprehensive, detailed account of the abundance and distribution of seabirds breeding around the coasts of Britain and Ireland.At the time, I was only 10 and don’t recall a lot about it, but I know it was a ‘big thing’ for Dad to do and something he relished afterwards. Dad had been a keen dinghy sailor and birdwatcher and as children we’d been bought up on the water with a ‘heron’ dinghy and binoculars around our necks. So, as children, the lure of the water was within our DNA. Birdwatching became a way of life for us as a family

and even to this day I’m forever scanning the countryside to see what’s about. Our interest in sailing diminished as we grew up, but later in life my brothers and I have all returned to the water in some form or other and now a younger generation of the family is finding pleasure in watersports and carrying this on.

And so, it was that I said to my wife, Andie, that I’d love to see an Albatross. Now there are lots of ways to fulfill this and the normal way would be to board a plane and fly to one of the many places in the world you can observe an Albatross from the safe vantage point of land. But that would be easy and why do easy when you can make life a bit more challenging. So, for my birthday in 2013 Andie presented me with a gift that I will treasure for the rest of my life; an interview with the Clipper race team in Gosport.For people who want to add a bit of a challenge to their lives, Clipper Ventures offer individuals the opportunity to pay for their passage as crew on one of twelve ocean race yachts which race against themselves on a 40,000-mile trip around the globe over 11 months. The circumnavigation is split into 8 Legs and individuals can sign up for as many Legs as they want to do. Each boat has a professional skipper and the paying crew have 4 weeks training to give them the basic skills they will need to take part in the race.Now I’m one of those people who always likes a challenge and with that in mind I decided early on that it would be the Southern Ocean for me. My ‘Everest’ of the seas, and my daughter Lauren probably summed it up best “Dad, for 4 weeks you’re just going to be wet, cold, tired and hungry”. I’d probably add ‘scared’ to that as well as I’m going to be in situations I’ve never been in before. Clipper describe the Southern Ocean Leg from Cape Town in South Africa to Freemantle on the west coast of Australia as a ‘sleigh ride’. Surfing a 70-foot racing yacht down 30 feet of rolling swell is going to be something of a challenge, to put it mildly.So, with Leg 3 decided upon I was also determined that I wanted to do Leg 4 as this takes in a West to East trip around Australia and the prestigious Sydney to Hobart Yacht Race.”David is now on-board sailing and living his dream but having said that he puts his life on the line at times, it’s very hard work and cramped. He has set a target of £2,500 to raise for the NKF. Let’s hope by the time he returns to the UK he not only smashes his target but sees his beloved albatross.

To follow David’s blog – www.chasingthealbatross.com To sponsor David – http://www.justgiving.com/chasingthealbatross

Chasing the

AlbatrossDavid

Lawson’s blog

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