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SEPTEMBER 2018 To find out more visit www.kidneyresearchyorkshire.org.uk

Fund News

A marathon of fundraising events!The Lomas family organised a variety of fundraising events in memory of Maggie Lomas.For the full story see page 5.

MAGGIE’S TENNER

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

• Maggie’s Tenner • Lockton Tea Room Event • Research currently funded

by Kidney Research Yorkshire

• R S Textiles

PLUS • Getting to know Stuart

Andrew MP • Just Giving fundraiser

updates • Welcome to Ben Jones

• Leaving a Legacy

IN THIS ISSUE

SAVE THE DATE:Champagne Ball 2018AT THE MARRIOTT HOTEL, LEEDS ONSATURDAY 17TH NOVEMBER, 2018.DRINKS RECEPTION 6.45pm. CHARITY AUCTION AND RAFFLE.

See page 13 for more details

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Welcome! Want to receive our newsletter by email?

Please send an email to mo@kidneyresearchyorkshire.org.uk so 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 Kidney Research Yorkshire 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 and the Humber (or elsewhere) 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.

Kidney Research YorkshireSt Peg’s Mill Thornhill Beck LaneBrighouse HD6 4AH

Telephone: 01484 400430E-mail: mo@kidneyresearchyorkshire.org.ukWeb: www.kidneyresearchyorkshire.org.ukTwitter: @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 Stuart Andrew MP Professor Alex M Davison RD, MD, FRCP Trevor Gurney FCA Danni Hewson Tim Hogarth The Hon Simon Howard Professor Graham A Leslie - Hon. DBA., CBE Matthew Lewis The Lord St Oswald Kevin Sinfield Christine Talbot

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 19.

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What do you do? I have been the Member of Parliament for Pudsey, Horsforth and Aireborough for the last 8 years and before that I was working in the voluntary sector in a variety of hospices. I am very passionate about helping others get the most out of life and so I really enjoy my job and the variety of opportunities it offers to help other people overcome the issues they face.

How did you get involved with Kidney Research YorkshireI was pleased to meet with Kidney Research Yorkshire when they invited me to hear more about the fantastic work they are doing in my constituency and across Yorkshire, and I was delighted to be asked to be a Patron!

What do you hope to bring to your role as patron? I would like to be able to help raise awareness of kidney disease and the fantastic work done by Kidney Research Yorkshire. I am pleased that I can use my platform as a Member of Parliament to discuss these issues with the Ministers in the Department of Health and Social Care and campaign for sustainable funding being provided towards renal research.

Has your life been touched by kidney disease? I am both grateful and lucky that my life has not been personally touched by kidney disease but I do appreciate the impact that serious and long-term illnesses have on both sufferers and their families following my time working in hospice care. Kidney disease is a terrible illness and charities such as Kidney Research Yorkshire are absolutely vital in helping to fund the research we need to beat it. I am hopeful that in the future, there won’t actually be anybody whose life has been touched by kidney disease.

Getting to know...Stuart Andrew MP

Welcome Ben JonesKidney Research Yorkshire is pleased to welcome Ben to our team! “My name is Ben Jones and I was diagnosed with renal failure in 2007. While it did reduce my quality of life, it also opened up a whole new world to me and really brought home the amazing work the NHS does for its patients. My diagnosis not only changed my life, but my career too. I used to work as a trade press journalist, but decided once I recovered to pursue a career writing and communicating about health, and am currently working as a communications officer for an NHS research organisation. My first transplant - a wonderful gift from my sister -

failed after seven years in 2015 but happily, I received my second one in November 2016, which is working well. I love football, films and non-fiction books. I joined this charity because I’m also passionate about an organisation which can make a real difference to patients where I live.”

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GOODBYE AND THANK YOU to HELEN ZHAO. Helen is an intern from Huddersfield University and has helped Mo out in the office for the past year. Some of the posters, leaflets, invites have been designed by Helen and she has done a great job! Good luck for the future Helen.

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It was founded in 2000, and by the beginning of 2012, Just Giving claimed that it had provided its services 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 Kidney Research Yorkshire as well having delivered over £20,000 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

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

PLEASE DONATE NOW

you haven’t seen it, have a look! It’s at www.justgiving.com/kidneyresearchyorkshire and the page also has links to the individual fundraiser’s pages.Here you will read about lots of fundraising initiatives that the Charity’s supporters have embarked upon – some several years ago and some more recent.The last six months have seen a number of highly successful fundraising events and you can read about them here…..

Stewart Waite West to East coast cycle ride On a beautiful sunny morning, Saturday 29th July, me and my friend set off for a two day cycle ride, from Morecambe to Filey to raise money for Kidney Research Yorkshire. Day one saw us leave Morecambe Bay heading back through the beautiful lanes of The Yorkshire Dales, enjoying some fantastic scenery and weather.Day two saw us leaving York in very heavy rain and strong winds, with the weather only breaking when we had about two hours journey home. Day two was an absolute contrast to the previous day providing a challenging day in the saddle – but to give up was never an option. My reason for doing this ride is that, whilst in his early 20’s my partner’s son was diagnosed with a very rare kidney disorder called FSGS. As his kidneys were gradually deteriorating it was apparent that he would need to have a kidney transplant. My partner put herself forward to be considered to be a Live Donor in February 2017. Over the ensuing months and following extensive scans and tests, the operation finally was carried out in October 2017 in St James Hospital, Leeds.

Seeing the fantastic work carried out by the medical teams in both Leeds and York has inspired me to just “Do Something”.My target was £500, but have actually raised over £1300 thanks to the generosity of friends and supporters.Finally, I am very pleased to report both recipient and donor are doing really well.

Day 1 – we followed the Route of “The Way of the Roses” - Morecambe - Lancaster - Settle - Pately Bridge - Ripon - Huby

Day 2 - we followed part of “The Great Yorkshire Bike Ride” - Huby - Sheriff Hutton - Terrington - Coneysthorpe - Malton - Settrington - Wold Newton - Hunmanby – Filey.

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Maggie’s TennerIn Memory of Maggie Lomas

raise £2000 but to date have raised £7001.34! this was achieved through a variety of fundraising events with the premise of taking £10 and investing it to make more. There have been cake sales at schools, Coffee mornings, afternoon teas, Christmas stalls, a half marathon and selling recipe books which included recipes from Maggie. Maggie’s Tenner has brought people together, raised awareness of the importance of organ donation and the great work that Kidney Research Yorkshire are doing.

limited her life considerably, she could not work or go on holidays, and she caught several infections. In 1999, due to a family’s great generosity in deciding to donate the kidney of a relative who had died, she received a Kidney transplant on her 35th birthday! This enabled Maggie to have 16, happy and healthy years where she was able to work and travel. She travelled to New Zealand, Australia and USA and became a chemistry tutor- work, which she loved. She was a great personality loved by all her family and her numerous good friends, sadly she died in March 2016 after catching fungal pneumonia. Due to the generosity of strangers, Maggie enjoyed many years of normal living. Maggie’s friends and family wanted to raise money in her memory for Kidney Research Yorkshire; this would, hopefully, enable others to be given the chance that Maggie had. Initially the family wanted to

Maggie Lomas was the eldest of four children. She was a science teacher and mostly taught chemistry to GCSE and A level pupils, she taught in Shropshire, Poole, Macclesfield and Leeds. In 1996 Maggie was diagnosed with Kidney failure. She received great care from St James Hospital in Leeds but after several months had to have dialysis three times each week. Although life saving, the treatments

Afternoon tea in Cheshire, raised over £500

Nicola had a Christmas stall and raised over £170

A coffee morning in Sheffield raised over £500

In Wigan, Emily sold cakes at school and raised over £160

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Richard & Jill Lomas – Monsal Trail Half Marathon 24th March

Before the marathon After the marathon

“We ran the half marathon to raise some money for Kidney Research Yorkshire in my sister, Maggie’s memory. Our training was going well until Jill sprained her ankle playing netball and was advised not to run. She was really worried about not being able to do the half-marathon, but had a scan and was advised that if she strapped her ankle up, she wouldn’t cause any further damage. The weather on the day was perfect for running, cool and no wind. The course is about as flat as you can get near Sheffield as it is on the Monsal Trail, a disused railway line and we were raring to go. So many supportive people sponsored us, our total was up to about £1250 which was amazing. The race was limited to 350 people as the trail stays open to the public, so we had to negotiate families out walking or cycling, dogs etc, but it was a very friendly race. Well, we completed it. I limped over the line as my calf went just after 8 miles, but I managed to get running again, with a bit of walking and limping. Job done! Very happy!”

Ian and Pam Firth of Kidney Research Yorkshire receiving cheque from Peter Lomas and family. On Saturday 7th April family and friends of Maggie Lomas presented a cheque to Kidney Research Yorkshire for the fundraising they have done for Maggie’s Tenner.

Peter Lomas, Pam Firth, Helen Shearer, Emily Shearer, Richard Lomas, Ann Lomas and Ian Firth, a trustee of Kidney Research Yorkshire, with his wife Pam, accepting a cheque of £ 7,001.34 on behalf of the Fund.

On Saturday 7th April family and friends of Maggie Lomas presented a cheque to Kidney Research Yorkshire for the fundraising they have done for Maggie’s Tenner.

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Gareth Andrews - Coast to Coast

Over the May Bank Holiday weekend I cycled the 215 miles Coast-to-Coast from Southport to Hornsea in aid of Kidney Research Yorkshire. Looking for a fresh challenge to keep me movated on my bike, and inspired by a colleague who has undergone treatment for IGA Nephropathy (often known as Berger’s Disease), I began training from the start of the year; cycling through freezing cold and snow to prepare myself for the three day trip. I have cycled on-and-off over the years; back in 2012 I completed the 120 mile Liverpool to Leeds Canal route by bike; however training has slipped off in recent years and I was looking for some motivaton to get me back on my bike. Due to health issues, the Coast-to-Coast Cycle has been my biggest challenge to date, and I am delighted to have completed it. I cycled with a friend who had experience of the route, and kept encouraging me over the weekend, spurring me on! We set off from Southport at 6am on the Saturday morning, and covered around 80 miles on the first day, arriving in time to watch Liverpool in the Champion’s League Final in Hadfield! Shame about the result! Somewhat downhearted after a Liverpool defeat, we set off on the Sunday at 7.30, and this was the hardest part of ride; having to carry my bike up the steps and over the Woodhead Pass. Fortunately the hill back down the other side was something of a relief. After completing around 70 miles on the second day, we

stopped in Selby for some well-earned rest. Monday was the last trip of the cycle, and fortunately (for my sore bum and aching legs) the flastest part of the route. After another 8 hours of cycling we were relieved to arrive in Hornsea and treated ourselves to fish and chips - well deserved I think! Though it’s not something I plan to repeat in a hurry, I feel very proud to have completed this challenge, and raised money - and awareness - for such an important cause. Gareth raised £775 in fundraising and the company he works for, N Power sent Kidney Research Yorkshire a further £500!

Ben Jones - Sponsored Walk “In 2007, I nearly died after a diagnosis of renal failure. As someone who also works for an NHS research organisation, I know that people only get better, and live longer, thanks to research. The sponsored walk I did on June 2 was to raise money for this important local charity – Kidney Research Yorkshire. Having battled kidney disease for more than 10 years, I know how valuable any breakthrough in the fight against it can be”.Ben raised over £700 for Kidney Research Yorkshire – Thank you, Ben.

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OTHER FUNDRAISING EVENTS THROUGHOUT YORKSHIRE AND THE HUMBER.

Lockton Afternoon Tea Event - Friday 22 June 2018 By Hilary Marryat The North Yorkshire Moors village of Lockton on a beautiful summer’s afternoon. Nothing could be more quintessentially English than afternoon tea at this pretty stone tearoom & gallery. Welcoming the guests was owner Janilaine while husband and chef Kevin worked on the creative treats from his patissière’s kitchen. Around twenty five of us sat together in friendly groups. Tables laid with bone china cups and a vintage style tea service. First surprise of the afternoon for one lucky person was a bottle of Prosecco for the prize-winning entrance ticket. Surprises continued throughout the afternoon with more unexpected treats and laughter.And then our best surprise of the afternoon - arrival of the Afternoon Tea. An elegant three-tiered cake stand delivered to every table. Local artists displaying their work in Lockton Tearooms and Gallery had kindly donated original pieces.

The silent auction continues over the summer with some of the proceeds supporting Kidney Research Yorkshire. Finally, finishing his year of travels today was the gorgeous Steiff Teddy Bear. Kindly donated and secretly named by antiques expert Tim Hogarth, he has appeared at all the charity’s events since November 2017. Over 400 people entered the competition to guess the Teddy’s name and there was a last chance today before the name was revealed from the sealed envelope. Well…a guess may have been simple enough but announcing the name wasn’t a piece of cake. Excitement grew as the envelope was opened. Finding out that none of the hundreds of entries had been correct with ‘Murray’ another envelope contained his second name. ‘Sherman’ also remained a mystery to all those who had tried a guess. Finally, his name was chosen from all the entries in a hat. The favourite name was announced as ‘Henry’! This was my first event with Kidney Research Yorkshire and I was made very welcome. Many of the people I met described life-transforming kidney transplants or had undergone complex dialysis. Indeed, a privilege that we have a Yorkshire charity to support the continuation of this amazing work in kidney research. I was delighted to be part of the day.

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STAFF FROM BEAVERBROOKS HELP COLLEAGUE ASH AND HIS WIFE ELKIE By Ash Ingham

In January this year my wife Elkie was diagnosed with end- stage renal failure. She had been suffering from occasional migraines in the months leading up to the diagnosis, other than this she was like any other healthy 28-year-old. Although it came as a shock, many of Elkie’s relatives have suffered with this condition previously. When she was a child, her father had been diagnosed with renal failure in his late twenties. After receiving his kidney transplant he developed non-Hodgkin’s lymphoma and after trying stem cell treatment and chemo-therapy sadly he was unable to beat the cancer. Her Grandfather and Uncle were also diagnosed with renal failure. Her Uncle received his transplant 9 years ago, this was successful and allowed him to resume his life as it was before. Her Grandfather however also developed cancer and died. On Diagnosis we discovered that Elkie’s kidneys were functioning at below 5%. Dr San Balasubramanian a Renal Consultant at York District Hospital suggested Peritoneal Dialysis until a donor kidney became available. This would enable dialysis at home through the night meaning that she could still complete her midwifery degree. Elkie is a final year student at Hull University and is eager to graduate this year. It would also cause less disturbance to our routine at home for our children, Bradley (8), Bobby (7) and Ruby (4). The surgery to fit the peritoneal catheter went well and although recovery was painful by mid-February she was ready to start dialysis. The PD nurses showed us how to set up the machine safely and how the therapy worked. This hasn’t been without its challenges; more than once I’ve woken up in the night with the patient line wrapped around arms, legs and even my neck! Elkie has

also being finding it difficult to sleep due to developing the mysterious restless legs syndrome. Fortunately, whilst we were adjusting to these changes at home, Beaverbrooks, the company I work for were extremely supportive. They gave me time off to care for Elkie whilst she recovered from the surgery. Beaverbrooks also allowed me to change my working hours so that I could be more available at home for our children. I was first introduced to Kidney Research Yorkshire through Julie, my manager. Every year Beaverbrooks give their employees an amount of money for us as a team to donate to a local charity. After reading about the research that that is supported and funded by KRY Julie, myself and the rest of the team at our store in the White Rose Centre decided that we would like to contribute towards this. Kidney Research is incredibly important to me as although Elkie has had numerous tests, scans and biopsies, nobody was able to find the cause of the renal failure. It is also worrying when you take into account the family history that we may have to go through this again with our children someday. Elkie’s mum is currently being tested for suitability as candidate for a kidney transplant.

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In the past six months Brighouse Town AFC, via secretary David Parker and co-commercial manager David Rowland, have linked up with Kidney Research Yorkshire in a bid to boost more funds on an annual basis. Both have strong links with renal units and kidney research, David Parker via his wife Elizabeth who in 2002 had a transplant after 14 months on dialysis and David Rowland through his former company. Dave Rowland, a retired Technical Sales Director of Firth Powerfix Ltd along with Managing Director Mr Ian Firth, have been involved over two decades with the Fund. Mr Firth is a former chairman of the Fund, and along with Mr Rowland, have raised substantial amounts at various events including recently in conjunction with Brighouse Town AFC, members of the semi-professional Evo Stik Northern Premier League. Elizabeth was first diagnosed with a renal problem back in 1996 after a holiday In the past six months Brighouse Town AFC, via secretary David Parker and co-commercial manager David Rowland ,have linked up with Kidney Research Yorkshire in a bid to boost more funds on an annual basis. Both have strong links with renal units and kidney research, David Parker via his wife Elizabeth who in 2002 had a transplant after 14 months on dialysis and David Rowland through his former company. Dave Rowland, a retired Technical Sales Director of Firth Powerfix Ltd along with Managing Director Mr Ian Firth, have been involved over two decades with the Fund. Mr Firth is a former chairman of the Fund, and along with Mr Rowland, have raised substantial amounts at various events including recently in conjunction with Brighouse Town AFC, members of the semi-professional Evo Stik Northern Premier League. Elizabeth was first diagnosed with a renal problem back in 1996 after a holiday in Majorca where she suffered extreme

headaches. The now retired Dr Brook of Longroyde Surgery, Rastrick, sent her for checks to Calderdale Hospital, Halifax and it was not long before she was under the care of the also retired Dr Brownjohn of Leeds General Infirmary. After medication and monthly check ups as she was often breathless and feeling very tied, she was given the news that both her kidneys were “dead” and she would have to go on to dialysis in Leeds three days a week. After several months she was shown how to use the dialysis machine and began her own `regime’ at home with boxes of fluids delivered to the house on a regular basis and she even took the machine in the pilot’s cockpit on another holiday to Majorca where Palma Hopsital had delived fluids to the hotel for her to use.Upon return from this holiday husband david began tests to see if he could donate a kidney and all was going well at Leeds General until he was transferred on January 3rd, 2002 to St James’ Hospital. On a morning of tests there it was discovered he had type 2 diabetes although very low on the scale but it is was enough for the doctor in charge to say he could not continue as a result. It was a `long journey’ home to Brighouse and he was devastated. St James’ put Elizabeth on the transplant list and also placed a bleeper in her handbag and told her to make sure she kept it charged and with her at all times. She was actually sat in the hairdressers when it went off in July of 2002 and she rang into the hospital to be told to pack a suitcase and get herself checked in as they had found a suitable organ for a possible match. She drove straight to the Brighouse Echo, where `hubby’ was working, and told him the news. He was in totally shock and Elizabeth was far more calm and taking it in her stride. They nipped up home to Rastrick and collected all she needed and couldn’t wait to get to `Jimmy’s’. They were met by the surgeon and his team and work began to prepare from there. It was right on the weekend that David was also beginning a three week post as a Unit Manager for BBC TV Sport with some 50 staff working with him at the MEN Arena, Manchester for the 2002 Commonwealth Games covering Boxing and Netball. Elizabeth underwent her transplant operation on the Saturday and come Sunday with both daughters, Charlotte and Emily with her, she was in the High

Dependancy ward and things were not looking good as the kidney was weeping blood. David was told by his director to quit for the day and get over to Leeds and just when he was about to downtools Charlotte phoned to say the surgeon was happy he had sorted the problem and there was some light at the end of the tunnel. David stayed in Manchester, finished his shift at 11pm, shot off to his hotel and set the alarm for 5.30am to get off to Leeds before having to be back in Manchester and ready for broadcasting at 11am. He was delighted he would be let in to see her and was shocked to see her so `piped-up’ but said to be slowly progressing. Then for a whole week he did the 11pm finish and 5.30am rise to get over to Leeds to see her until they took her down to an ordinary ward. Elizabeth and David will be enternally grateful to all concerned at Leeds General and St James’ for what they have done and continue to do with the three monthly check ups, the correct medication and the most pleasant way the staff go about things at St James’s. Elizabeth dilligently takes her tablets morning and night and the kidney, knicknamed `Sidney the Kidney’ by their daughters and grandchildren, continues to perform at just over 50% and allows her to lead a normal life. There are times when she does catch an infection that she is knocked down harder than most but she has the will and strength to fight back. On the fundraising side Elizabeth’s late mother Mary organised a fundraiser at Sunnybank Gardens, Brighouse amongst the residents and they were all delighted to have done their little bit.

By Dave Parker

BRIGHOUSE TOWN AFC

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Bangers, burgers and buns A fund raising BBQ

By Caroline Chapman

A fine evening, with no signs of the predicted sea fret, saw Rotarians, from the two Scarborough clubs, Inner Wheel members and friends join Caroline (Chapman) to have fun and raise funds for Kidney Research Yorkshire. The idyllic setting of The Stained Glass Centre, Killerby near Scarborough, curtesy of Simon and Val Green, provided the perfect venue and backdrop for the BBQ. Friends rallied to do the cooking, provide the tasty salads and the good array of raffle prizes. It was a really enjoyable evening, not only raising funds but awareness of kidney issues. Back in 1971, following the sudden death of a member’s son from kidney failure, the Rotary Club of Scarborough raised enough money to purchase a property overlooking Peasholm Park to provide a holiday home for families who had a member requiring dialysis. The ‘Kidney Home’ was officially opened on 25th June 1972, with one bedroom converted so that treatment could be provided and families could enjoy time away together. Leeds Kidney Research Fund and St James Hospital provided all the back

for the use of the house by dialysis patients reduced and the decision was made by Leeds to give up the use of the facility, however the property is still owned by the Club and used by other charitable organisations. A number of those at the BBQ had themselves been amongst the band of supporters of the facility all those years ago. The final sum raised at this event was an amazing £850. A big, big thank you goes to everyone for their generosity.

up. This was a very progressive idea back then, in fact the first such facility in the country. Caroline took over the task of organising the ‘meeters and greeters’ rota to welcome guests as well as overseeing the housekeeping etc. New curtains, bedding, utensils etc. etc. were provided. Little did she realise that many years down the line she would develop nephrotic syndrome and CKD with the prognosis that she will require dialysis in the not too distant future. During the 1990’s the demand

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WAYS YOU CAN FUNDRAISE FOR

KIDNEY RESEARCH YORKSHIRE.A big thank you to all those that have organised

fundraising events for us and those that have joined in with organised events and raised money

through JustGiving.“But I don’t have time or the resources to organise a fundraising event”,

I can hear you cry. Don’t worry, take a look at our NEW improved website www.kidneyresearchyorkshire.org.uk

under GETTING INVOLVED and then FUNDRAISING ACTIVITIES – here you will see a list of organised events in your area which you can take part in.

If you work, ask your employer if they give to charity – like Ash’s employer Beaverbrooks (page 9 story) or your employer may match any money you raise

like Gareth’s employer N Power. (page 7)Make a Will Week is 10-16 September (page 17), you can remember Kidney Research Yorkshire by leaving a legacy, safe in the knowledge that this will

help fund vital research.You can attend our Charity Ball Saturday 17th November at the Marriott Hotel,

Leeds. (page 13)

Or you can simply donate to us, via BT MY DONATE on our website or Facebook page or send us a cheque!

Any way you choose to support Kidney Research Yorkshire – We are extremely grateful and thank you for your continued support.

Our annual Champagne Ball is one of our biggest fundraisers of the year and last year we made over £24,000 for life saving medical research. This year we are holding our ball back at The Marriott Hotel, Leeds, where you will receive a warm welcome. Why don’t

you and your friends join us, or come with your work colleagues for your Christmas party? Any way you decide to join us, you will enjoy the evening as well as helping us to fund vital research into kidney disease. We look forward to seeing you there!

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YORK NEW HAEMODIALYSIS STARTER PATHWAY

Dr Paul Laboi of York Hospital has given us an update of his current research. He told us:-“Patients find the journey through advanced/predialysis CKD filled with uncertainty and have an overarching belief that avoiding dialysis initiation is a good result. Hence standard preparation for dialysis, which can vary between dialysis units, might not be in time-sync with patients time for information need.In York, we have a very good predialysis service which includes clinic visits, home visits, predialysis group education, dialysis start program etc. But we still have 25-30% of patients who might have not engaged with predialysis team. In addition, there is also another group who have had education a while back with no further ‘refresher’ sessions. We think these patients might not be

aware of choices that they might be able to make because of lack of relevant & timely education. We plan to extend our predialysis education by utilising the first six dialysis sessions experienced by all our new haemodialysis patients. Patients will have a one to one session with their nurse, during which time, they can choose any topic on the New Starter Checklist & ask for more information. Liverpool Renal Unit had done a similar program and found that they had improved care delivered to their patients. We intend to build and extend on their learning.New Starter Checklist has got about 40 topics under three headings – dialysis interventions, health & wellbeing and taking control. Patients can choose any topic for discussion. We believe sharing information important to our patients might reduce anxiety and help build confidence in their ability to take control in their care. This structured pathway may allow patients to make better informed choices on dialysis.We are grateful to Kidney Research Yorkshire for supporting our work”.

Research currently being funded by Kidney

Research Yorkshire

In September 2017 a team of researchers led by Dr Anna Winterbottom (Research Psychologist; Leeds Teaching Hospitals Trust) were awarded £120,712 to develop a decision aid to help patients choose between conservative management and dialysis treatments. The decision aid will help kidney doctors and nurses talk to their patients about this difficult decision and it will help patients’ think about how they want to manage their kidney disease as their kidneys begin to fail, in a way that best suits their health and lifestyle. Since commencing the project the team have been gathering data to ensure that the content of the decision aid is accurate and relevant and therefore suitable for use in clinical practice. Completed and ongoing studies include: 1) an audit of the provision of information and quality of written information about conservative management provided by UK renal units; 2) a quality assessment of currently available decision aids focussing on dialysis and/or conservative management treatments for kidney disease; 3) a review of clinical guidelines, and 4) interviews with staff and patients at St James University Hospital, Sheffield Northern General and St Luke’s Hospital, Bradford. 1) An audit of conservative management leaflets provided by UKrenal unitsSo that we may understand how information about conservative management is communicated to patients we sent a questionnaire to all UK renal units (n=72) and 3 leading UK kidney charities (n=3). 54 units (75%) responded. Conservative management is discussed by nephrologists (98%) or nurses (100%) during consultations with patients and supplemented by: leaflets (96%) and/or DVDs (28%), nurse-led home visits (62%), workshops (29%) and/or meetings with other patients choosing conservative management (12%).

Copies of written patient information leaflets were also requested. Nineteen units (36%) provided copies of leaflets about conservative management, and we conducted a quality assessment of 18 different leaflets to look at the strengths and weaknesses in their design. The layout of the leaflets was good, but they were rated as ‘fairly difficult to read’. The leaflets were able to inform people about the treatment options but they did not present the information in a way that could help patients make informed treatment decisions. The findings of this study will help us think about ways in which we present information in our decision aid to help staff and patients consider this important treatment choice. A journal article providing an overview of the project studies is due to be published in the Journal of Kidney Care in June 2018 and the most recent findings have been presented at the Dialysis Research Day, Sheffield (May 2018) and at UK Kidney Week, Harrogate (June 2018). We are always looking for patients to take part in our research and/or if you would like more information about this project, please contact Dr Anna Winterbottom (anna@winterbottom.co.uk). Other team members include: Professor Hilary L Bekker (Chair in Medical Decision Making, University of Leeds); Dr Andrew Mooney (Consultant Renal Physician, St James University Hospital); Dr Lynne Russon (Consultant Palliative Care Physician; Wheatfield’s Hospice, Leeds); Vicki Hipkiss (Senior Nurse Specialist, St Luke’s Hospital, Bradford); Richard Williams (patient representative); Dr Lucy Ziegler (Academic Fellow, University of Leeds).

By Dr Anna Winterbottom

Developing a decision aid to support staff and patients making the conservative management vs dialysis choice: project update

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When, where and how did the digital revolution kick-off for renal medicine? The introduction of computers into the speciality of kidney disease occurred nearly forty years ago and was developed with enthusiasm throughout the 1980s. The history of the enthusiasts was recently explored at a meeting of retired medical and technical experts. They had used the British Renal Computing Group (1982-8) as a focus for exchange of information and database development. The meeting was supported by Kidney Research Yorkshire, drawing on funds accumulated from past, nationally successful, local IT applications. The typescript of proceedings will be posted on the Renal Association website (www.renal.org). As a kind of introduction, a poster was presented at the recent UK Kidney Week conference at Harrogate (see photograph). Yorkshire was prominent in the very early development of computing to support kidney patient management, first in Hull then Leeds. The minicomputers of the 1980s were used to make complicated calculations, to store patient or unit details and to transfer such data when patients changed unit (say to be transplanted) or to the EDTA (now EDTA/ERA) Registry for study. Rather than cities in the UK, most of the activity came from regional kidney units, as they grew rapidly larger in giving access to maintenance dialysis and transplantation from the late 1960s onwards. Since laboratory results and treatment details were always the numbers of a series, the computer databases were very suitable for presenting them as graphs for study of each patient as treatment unfolded. Several practical advances were made in this period of exploration, some of which are only now finding a place in the speciality. There was international interest and for a short while, in the mid-1980s, UK kidney unit computing was the most developed in Europe.

Kidney Research Yorkshire asked Dr Eric Wills of the British Renal Group the question:-

The suitability of computing in renal medicine has been evidenced by the development of the UK Renal Registry and Renal Patient View, both reflecting the modern approach to managing kidney patients using evidence and the potential for self-monitoring. Just as cyclosporine, for example, transformed the results of kidney transplantation, so renal clinical computing created, in

retrospect, a more controlled platform and ‘climate’ for patient management. In the event the meeting demonstrated the value of hindsight in understanding the background and consequences of what was naïve IT in a fruitful clinical setting.

Es Will, Retired (2007) Renal Physician, SJUH

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RS Textile Collection LLP

working with Kidney Research Yorkshire

In January of this year, Kidney Research Yorkshire began working in partnership with a Yorkshire based textile recycling organisation – R S Textile Collection LLP. They are passionate about the recycling business and aim to provide a ‘second-to-none’ efficient service to all, including helping our charity raise valuable funds for research into kidney disease. R S Textile Collections have placed the first Kidney Research Yorkshire collection bin at Ousefleet village hall at the beginning of July. The aim is to place textile collection bins at various sites throughout Yorkshire and the Humber showing our beautiful coloured logo.

Every year, more and more people like to leave a gift to charity in their Will.Most of our funds come from the generosity of people like you; but it’s a little known fact that gifts in Wills are actually our most vital source of income. Charitable legacies are the foundation for causes like ours and are vital in continuing our work. Even a small amount can make a big difference.Remember A Charity in your Will Week, from 10-16 September 2018.

Writing a Will is one of the most important things you will ever do. After you’ve taken care of your loved ones, you too can pass something special on by including a charity you care about.Taking care of your loved ones and favourite charities is easier than you think.

Visit www.rememberacharity.org.uk for more information

Leave a gift to charity in your will

WE NEED YOUR HELP Whilst you are on your travels, you may have seen other collection bins for different charities. If you see a site that has no collection bin on it, or you think a collection bin would be well placed at a shopping location, please contact us and let us know. We will then try to get in touch with the owner to see if they will place a bin there for us. Thank you for your help.

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The legacy for £70.000 has come from the Will of Mrs Dilys Palmer, Leeds, who died 14th October 2017 following a stroke in 2011, six and a half years ago. The stroke left Dilys totally immobile, unable to read or enjoy the things we all take for granted. She never complained. Her husband Kenneth, who died on 5th November 2003 suffered from failing kidneys, and for the last few years of his life was on regular dialysis. The facilities made available for his treatment – the regular and automatic supply of his prescription - arriving in boxes wherever they were in the country, on holiday or at home, made a difficult illness bearable. Both Dilys and Kenneth were very aware of the need for further research into kidney function and disease, to bring possible solutions to those who suffered in this way. Kenneth ensured a contribution to the work by leaving a clear mandate in his will for money to go to the Yorkshire Kidney Research Fund. This mandate was followed faithfully by Dilys, when she reviewed her own will at the very beginning of her own illness. We held Powers of Attorney for Dilys, and when she died we became Executors and were responsible for the distribution of the legacies in the Will. We suddenly found that the Yorkshire Kidney Research Fund did not exist! We looked further and found Kidney Research Yorkshire, a charity operating from Brighouse. As we live in Halifax it seemed worth a trip out to check the possible home of the legacy. We were delighted, and relieved, to find that the two names indicated a progression. The people who had headed up Yorkshire Kidney Research Fund are the same as the ones now involved in

leading Kidney Research Yorkshire. After a pleasant reception at Pegs Mill, a good chat and a welcome cup of tea with Julian Wiley, we were very happy to send the money the following day. We can say with conviction that it would be Dilys and Kenneth’s prayer that the money will enable meaningful research funding and positive developments in the coming years.

Dilys and Kenneth were lovely friends, with strong leadership roles in the local Methodist Church in Methley. They were hardworking, loving people and they are sorely missed.

LEGACY LEFT TO KIDNEY RESEARCH YORKSHIRE

By Ian and Chris Whitehill, Halifax

Kidney Research Yorkshire cannot recommend specific solicitors. If you don’t have a solicitor yet, you can visit the Remember A Charity website to find a solicitor in your local area, who will be able to advise you on leaving gifts to charities when making a Will: In addition, four solicitors in the region around our Brighouse office have agreed with us that they are willing to help anyone wishing to leave a legacy to Charity.

Applebys Solicitors, Bradford, BD2 3JR call Andrew Lane on 0800 169 1325Pudsey Legal, Pudsey, LS28 7HQ - Tel 0113 254 9733Schofield Sweeney, Bradford, BD1 4DY / Huddersfield HD1 2HG call Sarah Hodkinson on01274 377284MKB Solicitors, Barnsley, S70 2LP call Steven Dawson on 01226 210000

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Please consider leaving a gift in your will for the Kidney Research Yorkshire. 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 Kidney Research Yorkshire 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

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

Kidney Research YorkshireSt Peg’s Mill Thornhill Beck LaneBrighouse HD6 4AHPlease include this form with your donation

Mo Ashbridge, Charity AdministratorKidney Research Yorkshire

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

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