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SEPTEMBER 2016 To find out more visit www.ykrf.co.uk

Fund News

A hardy trio of fundraisers have brought in sponsorship of over £2000 for Yorkshire Kidney Research Fund by climbing the Yorkshire Three Peaks on a very wet day in early July. Lots more details on page 6.

SAVE THE DATE:Champagne Ball 2016At the Marriott Hotel, Leeds on Saturday 26th November 2016. Drinks reception 6.45pm. Live Music, Charity Auction & Raffle.

See page 11 for more details.

Three Peaks walk

Welcome to the latest edition of Fund News! We hope you’ll enjoy reading all the good work which has been taking place around the region.

• Yorkshire Three Peaks Walk – raising funds for Yorkshire Kidney Research Fund

• My unusual kidney transplant• Leeds Institute for Kidney &

Transplant Research• Strang Legacy (Paediatric Research)

– an update… and lots of other fundraising news

PLUS• Constructing Excellence in Yorkshire

& Humber presentation• Pauline Griffiths – golfing success at

British Transplant Games• Holiday Dialysis Experiences• Just Giving fundraiser updates

IN THIS ISSUE

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Welcome! Want to receive our newsletter by email?

Please send an email to info@ykrf.co.ukso that we can add you to our mailing list

What we do... Living with kidney disease pervades every aspect of life - what you can eat, drink, your ability to work, have holidays, spend quality time with your family - all is adversely affected by this condition. It is for this reason that the YKRF was founded in 1970, to support research to improve the lives of adults and children who suffer from a variety of kidney disorders. The Fund supports projects all over Yorkshire supporting research to improve diverse areas of kidney disease and its treatment. Our Charity relies on donations to support everything we do, the main aim being to make a positive difference to kidney patients and their families. We therefore very much appreciate the donations made by the people who give, and are thankful for their generosity in helping us to work towards saving lives.

Yorkshire Kidney Research FundSt Peg’s Mill, Thornhill Beck LaneBrighouse HD6 4AH

Telephone: 01484 400430E-mail: mo@ykrf.co.ukWeb: www.ykrf.co.ukFacebook: www.facebook.com/KidneyResearchTwitter: @SecretaryYKRF

How to get in touch

Key StaffJulian Wiley ChairmanIan Firth Trustee and Head of Charitable ActivitiesVacancy Head of FundraisingAndrew Mooney Medical AdvisorVacancy Head of Marketing and CommunicationsBill Griffiths TreasurerMo Ashbridge Administrator

Our PatronsGrateful thanks are extended, as always, to all our patrons: The Rt. Hon. Professor The Baroness Afshar OBE Professor Alex M Davison RD, MD, FRCP, Trevor Gurney FCA, Tim Hogarth, The Hon Simon Howard, Paul Hudson, Sir Ben Kingsley, Graham A Leslie Hon D.B.A, Jeremy Paxman, The Lord St Oswald, Kevin Sinfield, Christine Talbot Clare Teal

If you would like to make a

donation, we’d love to hear

from you. Please take a moment

to fill in the form on page 15.

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I have always been an adventurous person and exploring new places is a lifelong passion of mine. I have been a kidney patient for 28 years having suffered reflux as a child. My kidneys failed when I just 22 years old, less than six months after graduating from the University of Leeds and about two months in to my first “grown up” job as a Support Engineer. I started peritoneal dialysis (PD) straight away, eventually advancing to the overnight APD machine after six months. The impact on my life was huge but I was determined to find a way around the hurdles the illness put in front of me, the main one of these being the ability to travel. Whilst dialysis has made this harder, it is not impossible and I have been fortunate enough to visit some fantastic places whilst going through the full raft of treatment options for my kidney failure. I visited Europe, New York and Canada whilst on PD, and then Hong Kong, Morocco, Iceland and back to Canada (my favourite place in the world!) once I had my transplant in 2007. Sadly my transplant failed in 2013 and due to medical complications, PD was no longer a treatment option for me. I started Haemodialysis at St James Hospital and eventually moved to home haemodialysis at the end of 2015. The travel bug never left me and even though Haemodialysis is probably the most complicated of the treatment options to arrange abroad, it is perfectly doable if you plan ahead. I have been on two holidays as a haemodialysis patient, Lanzarote last year (for my honeymoon!) and a San Francisco and Las Vegas twin centre in May this year. The main issue is finding the clinics and arranging the treatment slots. Many hospitals have a Dialysis Away From Base (DAFB) coordinator who can assist with this or alternatively you can use the services of Freedom Dialysis www.holidaydialysis.co.uk who will help arrange sessions abroad for a small admin fee. Freedom have a huge database of clinics worldwide and are specialists in arranging slots outside of the traditional holiday destinations. I used them for my trip to the USA and they were worth every penny! Alternatively you can do your own research and approach clinics in your chosen destination yourself but do get your hospital involved as soon as possible as they will need to complete critical medical paperwork prior to your departure. The main thing is to not be put off - yes it takes a bit more organising but the joy you get from a great holiday dialysis trip is amazing!

MY TOP TIPS FOR TRAVELLING AS A DIALYSIS PATIENT • Plan ahead. Usually your dialysis co-ordinator will need set dates first before they approach clinics abroad so it’s a good idea to do some research and pick your flights and hotels & work our your dialysis schedule beforehand BUT DON’T actually book them until your slots are confirmed. • Check Location. Once your clinic slots have been confirmed it’s best to check location & plan ahead how you are going to get there. If you have time, it is worth doing a ‘trial run’ to the clinic when you first arrive. Most clinics run on as tight a schedule as our hospitals do and any lateness could cut your treatment time. Don’t feel like you have to stay in the resort where the clinic is, we hired a car in Lanzarote so we could stay in a different area. • Don’t be put off by paperwork requests. Most clinics abroad will ask for extensive medical information prior to your arrival, some may even ask for x-rays. Almost all will want some kind of MRSA screening. Don’t be put off though, this is mainly precautionary. Your hospital can arrange tests beforehand and will flag up & deal with anything that would concern the destination you are travelling to. Make sure you check this with your renal team the week before you travel. For instance, make sure your hospital has checked potassium levels etc.. • Travel Insurance is crucial. Be prepared for the fact it might be more expensive but it shouldn’t be prohibitively so. The NKF have a list of insurance companies who have experience of dealing with patients with kidney complications. • Consider two night city breaks. If the thought of arranging treatment abroad is too daunting, why not consider a two night city break in between your sessions? I once flew out to Brussels on Thursday night after my session returning Sunday morning and then dialysing that evening. Most hospitals can be flexible about the times you dialyse around your trip.You should always check with your doctor first whether it is safe for you to travel.

Ready. Set. Dialyse and Go!by Liz Schofield

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What is your role at the Yorkshire Kidney Research Fund? I’m the new Charity Administrator, the only paid part-time employee. I undertake all the administration tasks, from opening the post to helping arrange The Annual Champagne Charity Ball.What would you say you bring to the YKRF? When I first left school, I worked in all areas of admin and then later, I trained as a Holistic Therapist, I love people and love helping them. So I think I have excellent communication skills and am very approachable. I am also very organised! Has your life been touched by Kidney Disease? I am extremely lucky, no, my life has not been touched by Kidney Disease, nor any friend or family member. My understanding/knowledge of Kidney Disease has grown since I started, but I do not underestimate the challenges people face as a result of the disease.What’s the best thing about your role? I only started working with the YKRF in June of this year, all of it is good! I am also looking forward to working on The Annual Champagne Charity Ball this year. I love hearing about the Grants that we pass and the research that is being achieved because of the YKRF.I think maybe I will have to give you all an update in twelve months time, to let you know which is the best thing about my role..I’m sure there’ll be many!!

Getting to know...

Here at The Yorkshire Kidney Research Fund, we are pleased to welcome Liz Schofield to our team of fundraisers. Liz has a wealth of knowledge regarding Marketing and IT and as a result is already managing our Twitter account and will be working on updating our Website.Along with these amazing duties, Liz will be assisting us with our Champagne Charity Ball, November 26th at the Marriott Hotel in Leeds.Liz currently dialyses at home three days a week, but this doesn’t stop her from living her life to the full. See her article on page 3.

Welcome Liz Schofield

Mo Ashbridge

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With the perspective of a couple of decades it is striking how clinical research has been reorganised on a national basis. What in the past were small parochial fiefdoms have been swept away and there are now big UK-wide structures that are responsible for awarding the bulk of the large

research grants. This has in turn fostered the nationwide collaboration of researchers with efficiency savings and access to big enough populations of patients to allow the testing of ever more refined treatments. The Yorkshire Kidney Research Fund has mirrored that change, moving from a charity that supported a laboratory with a single research focus oriented towards one hospital, to a charity with a true Yorkshire-wide remit and a much more diverse portfolio. The effort to make the charity’s work more professional at every level has been substantial and those involved should be congratulated. The “nationalisation” of UK medical research that I described will have a downside. The danger of focusing on big groups and dispersing large grants risks rewarding only the orthodox, to a large degree the tried and tested. The risk is that people with ideas that do not fit in with current thinking will find it harder to attract funding. This “gap” can be a good role for charities such as the YKRF. They have of course much less money to distribute but they are more fleet of foot and may be more likely to “risk” pump-priming the unorthodox. Because of the cost of much medical research charities such as the YKRF can only really hope to pump-prime good ideas and then if successful see the research strand taken on by other funders. The nature of research means of course that the end product is unpredictable; it would be a surprise if more than 10% of projects that were supported led to on-going work. Investigating what turns out to be a dead-end is of course great value and must not

Many readers of this newsletter will know that I am retiring at the end of July 2016. I started as a Consultant Renal Physician in Leeds in September 1993 and it will be no surprise that in nearly 23 years there have been big improvements in medical care and in the organisation of and fruits from medical research.

Dr Chas Newstead

be labelled as a failure. In a short article it is invidious to pick out a single area of clinical renal care where there have been big advances in recent times. But one example would be what we have seen happen with the care of patients with kidney transplants. Our understanding of the very complex immune mechanisms, that can result in early organ transplant rejection have greatly increased with some of the preliminary ground breaking research supported by the YKRF. We have changed the early treatment after transplantation which has greatly reduced the frequency of early rejection as well as the number of medicines that the majority of patients take in the long-term, clinical research that was pioneered in Leeds. Our ability to offer the option of live donor transplantation where pairs have “tissue incompatibility” has increased out of recognition, our understanding of this greatly influenced by basic research. Long-term management of people who have had renal transplants, which I am delighted to say as the numbers of patients with long-term successful grafts has increased has over the last 20 years become a growing problem. Investigations into this have also been supported by the YKRF and resulted in a higher degree (a Doctorate in Medicine) for a Consultant colleague who now works in Yorkshire. Supporting medical doctors for a period of research has been an important local contribution of the YKRF. This support may allow new discoveries to be made, but also gives colleagues an opportunity to be trained in research, a training that has very big spill over benefits for patient care in those clinicians’ daily practice. The YKRF supported numerous doctors in this training, some of whom are now Consultant Renal Physicians (or equivalent) locally in Bradford, Leeds, York and Doncaster, but also much further afield in other parts of the UK and also the USA. This is an important contribution of the charity to patient care and all involved should be proud of what has been achieved.

Chas Newstead. July 2016

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A hardy trio of Yorkshire Kidney Research Fund supporters completed 24 miles and 4800 feet of climbing on the Yorkshire Three Peaks trek on 2nd July. Starting at 8.00am from Horton-in-Ribblesdale, Sandra Piercy, David Collinson and Bill Griffiths took almost exactly 11 hours to complete the round, visiting the tops of Pen-y-Ghent, Whernside and Ingleborough in appalling weather. They were supported by Pauline

Griffiths, Jean Dobbin and Mel Dobbin who served much needed food and drinks at Ribblehead and Chapel-le-Dale. Despite the continuous rain, Mel joined us for the last 14 miles. Over £2200 was raised from sponsors for Yorkshire Kidney Research Fund and despite the weather, the trio all agreed that the walk was enjoyable and well worthwhile.

Raising funds for kidney research on Yorkshire’s Three Peaks

DID YOU KNOW?

Kidney disease can affect all people from all backgrounds at all ages including children, but South Asians and Afro-Caribbeans have a 2-3 fold increased risk of getting end-stage kidney disease

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It was founded in 2000, and by the beginning of 2012, Just Giving claimed that it had provided its service for more than 9,000 UK registered charities and 1.9 million fundraising pages for users, collecting over £1 billion cumulatively. Just Giving is important for Yorkshire Kidney Research Fund as well having delivered over £12,000 in donations over the last three years. It is always interesting and inspiring to visit the Charity’s Just Giving page – where interesting and often inspiring snippets about our fundraisers are there to see. If you haven’t seen it, have a look. It’s at www.justgiving.com/ykrf and the page also has links to the individual fundraisers pages. Here you will read about lots of fund raising initiatives that the Charity’s supporters have embarked upon – some several years ago and some more recent.

The last three months have seen a number of highly successful fundraising events. For example, Leeds based Tom Agnew has suffered with a kidney issue since he was 17. This didn’t stop him

running in the ASDA foundation York 10k run last month, raising over £500 for our Charity. Liz Churchill, from Yeadon has been raising funds for the Charity by competing in five separate races that make up the Yorkshire Warrior – Yorkshire’s Ultimate Extreme Obstacle Event. The races vary from a 5km assault course to a 10km hill race. Huddersfield based Alison Atkins had a get together to celebrate her 50th birthday and used Just Giving to raise funds for the Charity. Elsewhere in this Newsletter you will be able to read about the fundraising efforts of Sandra Piercy, David Collinson and Bill Griffiths on the wet and windy Yorkshire Three Peaks in July – another effort supported by Just Giving.

Many readers of this Newsletter will know all about Just Giving - the global online social platform for giving to charity.

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Yorkshire Kidney Research Fund supporter Pauline Griffiths is celebrating 10 years after her kidney transplant at St James’ this autumn. She started celebration in style at the British Transplant Games 2016 held in Liverpool at the end of July. Taking part in the golf competition at Lee Park Golf Club, Gatacre, she came first in one of the Ladies competitions,

GOLFING WIN FOR PAULINEwinning a gold medal and the Ian Lewis-Jones Golf Trophy. (Ian – who had received a heart transplant, collapsed and died whilst preparing for the World Transplant Games in 2007 – he was an ace cricketer and 6-handicap golfer.) Pauline is already looking forward to competing to retain her title at the British Transplant Games 2017 – to be held in North Lanarkshire.

Constructing Excellence Yorkshire & Humber (CEYH) invited The Yorkshire Kidney Research Fund to its awards dinner 1st July 2016 to be their charity partner.

Awards dinner 2016

Julian Wiley receiving the cheque from CEYH

Proceeds from the collection and raffle on the evening was also given to The Yorkshire Kidney Research Fund.

Dr Andrew Mooney

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I was diagnosed with chronic end stage renal disease in September 1993. I presented with 10% renal function which then deteriorated to the extent that I began peritoneal dialysis at Christmas of that year.Diagnosis was a huge blow to me and my husband as I had been seen by a Renal Consultant a few years previously and following a scan, was told to ‘go away and forget about the family history of kidney failure as I was the lucky one’. I went away and embarked on a five year intensive study, resulting in a B.Sc (Hons) Degree in Health Care Studies, simultaneous with working full time as a Health Visitor. When my studies finished in June 1993, I put my increasing tiredness down to the constant studies alongside working full time. I went to the GP and after blood tests and urine test, I was given an appointment at St James’ Hospital Renal clinic with Dr Davidson (now Professor Davidson) the following day!Four years of peritoneal dialysis followed during which time I had to resign from my much-loved job following a fall in snow which resulted in a huge abdominal hernia. Haemodialysis followed eventually and in 2000 there being no sign of a cadaver transplant, John, my exceptionally kind and loving husband, was undergoing the usual tests in order to become my live donor. During this time, John lost an amazing 23kgs in preparation for the operation! He liked the idea that it would be me who got his kidney and of course he just wanted us to get on with a more comfortable retirement. But then we received a call to see Dr Chas Newstead at his office. It appeared that

retrospective blood tests had shown that I had too many antibodies to John and any transplant between us would fail. What a blow! The only viable option we were given was to undergo a pre-treatment to remove antibodies which had been tried with some success at The Johns Hopkins Hospital in the U.S.A. Of course this led to a long discussion and eventually a protocol was drawn up and given to me to begin three weeks prior to the chosen date for the transplant. I began taking anti-rejection drugs daily from September 11 and at the same time I underwent four hour sessions of Plasmapheresis (blood washing) in the morning followed by a four hour infusion of gamma globulin in the afternoon. This continued Monday, Wednesday and Friday during the first two weeks and on week three Monday and Wednesday. The operation was scheduled for Friday of that week. This was interspersed with my usual dialysis on Tuesday, Thursday and Sunday. The antibodies were removed and the transplant between John and me was a success. I stayed in hospital for three weeks post operatively and had just one plasmapheresis during that time. I am grateful to the wonderful expertise of Dr Newstead and Sister Andrea Rhodes who cared for me so well during this exciting time. And now… well I am enjoying retirement with my lovely husband and thanks to him, we have now been married for 53 years!

A ‘very special’ kidney transplantSeptember 11th 2001 was a memorable day, for as well as the destruction of New York’s Twin Towers, it was the day I began preparing for my ‘special’ kidney transplant.

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Independent Renal Services in Doncaster were established between 2004 and 2007. This was extended with further dialysis units at Bassetlaw Hospital, Worksop in 2009 and Montagu Hospital Mexborough in 2010 under the ISTC E16 Renal Scheme. Doncaster and Bassetlaw Kidney Association (DaBKA) formed in 2007 and became a registered charity in April 2008. It is run on an entirely voluntary basis and offers both practical and emotional support to kidney patients and their families from pre-dialysis to post transplant. On a practical level DaBKA operates a small grant scheme for patients providing funding for a wide variety of items from essential household goods to supermarket shopping vouchers. DaBKA has provided over 300 local patients with a free Blood Pressure Monitor. Checking blood pressure regularly can help monitor kidney problems and provide early warnings if readings are different from normal. We also supply free medical alert wristbands for local patients; these can prove particularly important in an emergency medical situation by helping medical personnel give more appropriate treatment and may help prevent potential damage to fistulas.

DaBKA has also purchased a wide range of medical and non-medical equipment for the units to help improve the medical care and general hospital experience for patients. The most recent purchase being a Far Infrared Therapy Unit used to help the healing and development of fistulas. With regards to emotional support, patients sometimes find it helpful to have a friendly chat with someone who has positive experience of living with kidney disease. We can also put patients in touch with other organisations offering a more specialised information or advice service. We have funded and organised many social events over the years including day trips, quiz nights and annual Christmas Party. We are particularly excited about this year’s party as we are holding it in the Vulcan Hanger at Robin Hood Airport. DaBKA aims to increase public awareness of Kidney Disease and promote organ donation. Our Summer Gala is not only an excellent platform to further these aims but it’s also a great day out. The 2016 Gala has been our most successful yet both with regards to money raised but also Organ Donation Nurse Jo Cheetham registered 96 people up to the Organ Donation Register!Although the Gala is our main fundraising event we also hold other events throughout the year such as our Charity Auction in November. Funds are also raised by holding raffles, sponsored events, sale of promotional goods and general donations.

Doncaster and Bassetlaw Kidney Association

Contact Details:Telephone: 07444 281 141Email: admin@dabka.org.ukWeb: www.dabka.org.uk

Sean Starbuck, DaBKA Chair.

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Our annual Champagne Ball is one of our biggest fundraisers of the year and will take place at the Marriott Hotel, Leeds, on Saturday November 26th. Begin the festive season in style and help the Yorkshire Kidney Research Fund to raise vital funds for life-saving medical research.

YKRF CHAMPAGNE BALL 2016

Our guests will:• Enjoy an evening in the company of the Patrons, Trustees,

Research staff and supporters of the Yorkshire Kidney Research Fund

• Indulge in a gourmet three-course dinner• Experience an exciting line up of entertainment including live

music and DJ as well as celebrity hostsWith stunning prizes, auction, dancing and a few surprises along the way!

Find out more about our Champagne Ball... Individual tickets are £49.50. Last year’s ball was a sell out and this year we are limited to 250 tickets only!

Danni Hewson, our auctioneer

When? - Saturday November 26th, 2016Where? - Marriott Hotel, Trevelyan Square,

Leeds LS1 6ETHow much? - Individual tickets £49.50 Table of

10 £450How do I get tickets? - To secure your place or for more

information, please email Mo Ashbridge at mo@ykrf.co.uk or call 01484 400430

This Christmas / Autumn, Yorkshire Kidney Research Fund are planning to launch an opportunity for its supporters to take part in a Christmas Raffle to raise funds for the Charity. And also give everybody an opportunity to win some attractive cash prizes for Christmas. The tickets will have a top prize to the value of £250, with second and third prizes available as well. We are planning to send raffle tickets to all our Newsletter recipients. Look out for Yorkshire Kidney Research raffle tickets in your letter box in October.

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I first became involved with CKD when Anthony was twenty one, and went to have his wisdom teeth extracted. It was this normal procedure which threw up that he had Polycystic kidney disease. Pre-op tests showed an abnormally high bp, 195/95, so he was sent for an urgent scan. We too had to be tested, as it is usually hereditary. We were all negative. There aren`t really any symptoms with hypertension, therefore we had no idea anything was wrong. Monitoring is really important, so regular blood and bp tests are essential. The blood tests were a major problem for Anthony. As Anthony has severe learning problems, when he was thirteen he was sent for a blood test to try to determine the reason for this. They were looking for fragile x syndrome. The nurse who attempted to take his bloods was really horrible to Anthony. She never explained what she was going to do and just grabbed his arm. She shouted, “Keep still you stupid boy, how can I take blood if you’re going to move your arm?” She finally got two porters to hold him down. It was awful. Anthony was only thirteen but he was strong, and finally pushed the two men off. He then ran out of the hospital. As he grew up, he was eventually referred to St James`s. The staff there were amazing, and so good with Anthony. The traumatic experience he suffered at thirteen has never left him. I have spent five years of coming to Jimmies with Anthony for needle desensitisation. I took him once sometimes twice a week, without success. Eventually he had to go on the transplant register, as his kidney function had dropped to 8%. I asked Anthony`s consultant how long Anthony would have to wait for a kidney.

I was shocked to find waiting time for a cadaver kidney is three and a half years. I asked if I could donate one of mine. Being seventy two at the time, I expected him to say I was too old, but I was amazed when he said,” Yes, shall I put the wheels in motion?”We were a perfect match, and after ten months of tests the transplant went ahead. It was for me no problem at all. I was home in three days, Anthony in five. There have been no rejection episodes, and Anthony is on six monthly clinics, I am yearly. I think it was Dr Baker who said, “It`s just as though the kidney

has always lived there.” Since the transplant, which was three and a half years ago, Anthony has been full of life again. I was back in my gym after six weeks. After twelve weeks I was back in Step, Body Attack, Zumba and Body Pump classes. I have also organised and taken part in several two hour Zumbathons and on 2nd July 2016 took part in The Yorkshire Three Peaks Challenge, all for YKRF. Although I was unable to complete the whole 25 mile walk. A 10,000 ft skydive, and The Water Bucket Challenge for Pancreatic Cancer Research. A Zipwire Challenge for Mental Health, and prior to this, I did a 32 mile roller coaster ride for National Children`s Homes, which is now Action For Children. I’ve also done other stuff for Wakefield Hospice, but my main charity is YKRF.

Being a living donor is so easy, and does not make you an invalid, as you can see from my escapades. I have just completed my autobiography, which covers my life from my earliest memories at three, up to the present, heading towards seventy seven. All sales profits if published will go to YKRF.

David Collinson: fundraiser

Anthony

DID YOU KNOW?

Not only can you live a normal life with one kidney, you can actually lose 90% of your kidney function without having any symptoms - the commonest level at which people feel unwell is when the function falls to 8% of normal

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Mary Strang Legacy ...update A £300,000 legacy left to the Yorkshire Kidney Research Fund is helping youngsters coping with debilitating kidney diseases. Almost £300,000 was left in the Will of Mary Louise Strang in 2008. Mrs Strang, from Bailiff Bridge near Brighouse, had bequeathed the money to help treat babies and toddlers with kidney disease who were being treated in Leeds. This Legacy is being used to fund three valuable staff members to help children and their families. A part-time Clinical Psychologist has been funded for seven years and a part-time Clinical Nurse Specialist for six, with the addition in 2014 of a Paediatric Renal Nurse Educator, Richard Carless. Richard specialises in Renal nursing and educates and trains nurses in the specific skills needed for this field ensuring the children receive the highest expertise in nursing. Clinical Psychologist Simone Friedel, supports children, parents and siblings going through dialysis and with issues around transplants. The Yorkshire Kidney Research Fund asked Simone for an update on her work during the last 3 years. “The main areas of my job centre around managing the psychological “side-effects” of a chronic or acute medical condition and its management. Renal diagnoses often entail a long-term or chronic course thus requiring families to adjust to the reality of the diagnosis and learn the skills necessary to carry out various forms of treatment at home. For the children and young people themselves they are often faced with various, repetitive, invasive tests that most are naturally frightened off - nobody like needles or blood tests!! My job is broadly to a) help children/young people (YPs) to adjust to the reality of their diagnosis, b) help them learn and develop coping strategies to deal with tests and their treatment, c) help them develop resilience to deal with the significant demands arising from their condition and its treatment, including issues around adherence. (Adherence is the degree to which patients take their medicine as directed). I’m trained in different therapeutic techniques, including CBT, and over the last 3 years I have received further training in ACT (acceptance and commitment therapy) and compassion-focussed therapy- this gives me a tool kit to help tackle specific problems, ranging from procedural distress (needle phobia) to low mood, anxiety problems, adjustment issues, adherence problems to name a few. I really enjoy my job - as you can see it’s so varied and gives lots of opportunities for developing things further. I’m lucky to be part of a lovely team who value my work and work collaboratively. Finally, while I often see people who are deeply affected by the impact of their child’s renal condition, and it can be hard to see it -after all I’m a parent myself, I feel it is a privilege to walk their journey with them - often from the child’s diagnosis to the point where their condition is manageable/ in remission / post-transplant and seeing how young people can flourish despite the demands on them is very rewarding. I’ve had some really lovely feedback from families and it is nice to know that my work is valued. If I had one thing to wish for - it would be to have more time to do more”. Sophie Yates, Clinical Nurse Specialist helps families whose child is on peritoneal dialysis overnight at home, by visiting them at home and providing them with support.

Sophie gave us this update:- “I continue in my role primarily training and supporting children and their families on Peritoneal Dialysis. I also help support some of our chronic patients who are not yet at the point of dialysis but may have multiple needs and require support. The main objective of my role is to keep the children and families at home as much as possible, and reduce the amount of time visiting hospital. As part of my role I organised two nights away for some of our haemodialysis families and also some of the teenagers (without parents) to Drayton manor, this was great for our patients and families to meet each other and get a better understanding of the different types of dialysis and transplants. It also allowed some of our families who may not normally get an opportunity such as this to have a weekend away”.Dr Maggie Fitzpatrick gave us this report on Aamina Aamina is generally doing very well. She had a deceased donor renal transplant in August 2013 having been on peritoneal dialysis for some time before that which was obviously quite a challenge for her and her family. The transplant is now functioning well following a few complications in the early post transplant period. She will be 7 in September and is attending school regularly, has a good appetite and is now thriving which is great news. She has unfortunately has some problems recently with urinary tract infections which we are managing but the transplant is still working well for her. She does need to take a number of medications to prevent rejection, needs to maintain a good fluid intake and is also on a small dose of a prophylactic antibiotic to help prevent urine infections.

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Leeds Institute for kidney & transplant research The Leeds Renal team have begun work on a venture to stimulate and grow research in kidney medicine in Leeds. A number of the consultants, scientists, and allied health professionals felt that the research programme in Leeds could become ‘greater than the sum of its parts’ by seeking to join together in collaboration. Dr. Matthew Welberry Smith has set up, and now chairs, the Leeds Renal Research Steering Group, which met for the first time in May this year. The group hopes to bring together funding to more firmly embed research in the department, possibly through the creation of a research institute. Dr Welberry Smith said ‘Kidney research in Leeds has a fantastic track record, covering diverse topics including transplantation, chronic kidney disease, acute kidney injury, body composition monitoring, and proteomics - to

mention but a few of the areas where our department, in collaboration with the University of Leeds, as well as other national and international partners, has made a real impact on clinical practise. We’re extremely grateful to all the patients who have got involved in research over the years, allowing us to take these things forward, as well as to the Yorkshire Kidney Research Fund, who have supported much of the work. We want to see kidney research here go from strength to strength, starting by bringing all the different strands of our work together. With three Honorary Clinical Associate Professors in our department already, and numerous other strong University links, we are in an excellent position to expand our research activity.’ The Renal Research Steering Group intends to meet 2-3 times per year, and is in the process of drawing up the overall research strategy for the future”

Dr Welberry Smith

DID YOU KNOW?

Each kidney contains between half a million and a million filtering units, or glomeruli, which filter the blood 24 hours a day 7 days a week.

WHAT DOES WKD MEAN? For many people WKD is a brand of alcopop. It is sold and heavily marketed in the United Kingdom and Ireland with the slogan ‘Have you got a WKD side?’ (Have you got a wicked side?). But for us, WKD is World Kidney Day, an annual

global awareness and education event, held on the second Thursday in March. Thursday 9th March 2017. Yorkshire Kidney Research Fund have various plans to celebrate World Kidney Day 2017. But we would also encourage everyone to get behind the campaign and try to organise an activity or event to draw public attention to the importance of kidney health - what can be done to protect kidneys before disease strikes, and to assist patients who already have chronic kidney disease. Please get in touch with us at mo@ykrf.co.uk 01484 400430 and let us know what you have planned!!

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Please consider leaving a gift in your will for the Yorkshire Kidney Research Fund. Leaving a gift to charity is a fantastic way for your generosity to last beyond your own lifetime. Many people choose to remember the work of the YKRF in their will, helping to ensure that the work of the charity can continue after their death. We simply couldn’t do what we do without people remembering us and many of the hugely important projects that are undertaken by the research teams we support just wouldn’t happen without this vital source of income.Gifts in wills can be large or small – you don’t have to be rich and famous to make a contribution that will make a difference and leaving a legacy to a charity may well make the burden of inheritance tax lighter. If you would like to leave a legacy, please don’t hesitate to contact us for further information:

Leaving a Legacy... will you make a difference?

$GIFTAID YOUR DONATION AND MAKE IT GO EVEN FURTHERIf you are a UK taxpayer, please take a minute to complete this Gift Aid form and you can help us even more as we can then claim back 25p of every £1 of your donation. Please complete all sections of this form, detach and send back to us with your donation and help us to make the most of every penny we receive.

I am a UK taxpayer and wish my donation to qualify for Gift Aid

Please contact me to arrange a regular donation to the YKRF

Receipt No. (Office use only):

Please send me more information on how to volunteer

Please include me on your mailing list to receive Charity news, newsletters etc

Mr/Mrs/Miss/Ms/Title ......................................................

Full name .......................................................................

Donation amount (£).......................................................

Signature .......................................................................

Date ..............................................................................

Address ..........................................................................

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Mobile ...........................................................................

Please make cheques payable to: The Yorkshire Kidney Research Fund. Please return completed form to:

The Yorkshire Kidney Research FundSt Peg’s Mill, Thornhill Beck LaneBrighouse HD6 4AHPlease include this form with your donation

Mo Ashbridge, Charity AdministratorThe Yorkshire Kidney Research Fund

St Peg’s Mill, Thornhill Beck Lane, Brighouse HD6 4AHTel: 01484 400430 email: mo@ykrf.co.uk

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We are an enthusiastic and highly motivated voluntary Committee who meet once a month. If you’d like to get involved with fundraising, helping at our events or even joining the Committee, please get in touch as we’d love to hear from you.

The Yorkshire Kidney Research FundSt Peg’s Mill, Thornhill Beck Lane

Brighouse HD64AH

Tel: 01484 400430 Email: mo@ykrf.co.ukwww.ykrf.co.uk

Registered with the Charity Commission No. 1106412Registered in England & Wales No, 5205363

Yorkshire Kidney Research Fund is a registered charity on Ebay as well as being registered with both BT MyDonate as well as JustGiving so that you can make online donations easily. mydonate.bt.com/charities/yorkshirekidneyresearchfundwww.justgiving.com/ykrf/donate

If you’d like a regular copy

of Fund News, please email us on:

mo@ykrf.co.uk and we’ll add you to our mailing list

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This Christmas / Autumn, Yorkshire Kidney Research Fund are planning to launch an opportunity for its supporters to take part in a Christmas Raffle to raise funds for the Charity. And also give everybody an opportunity to win some attractive cash prizes for Christmas. The tickets will have a top prize to the value of £250, with second and third prizes available as well. We are planning to send raffle tickets to all our Newsletter recipients. Look out for Yorkshire Kidney Research raffle tickets in your letter box in October.