Page 1 Crohn’s and Colitis UK Northern Ireland Group Network

September 2018 Issue 55

IN THIS ISSUE

Northern Ireland Network

2 & 3 Tributes to Peri

4 Profile of new OT member

Information for Students

5 Fundraising/Donations

6 AGM and birthday party

Accessible Toilets

7 Donations to IBD Nurses

Donation for Research

Fund

8 Contact details

AUTUMN MEETING

Since 2015 Peri has penned this front page column, so it is diffi-cult for me to find the words to express how devastated I am that she is no longer with us. It is possible that some of you may not have heard that Peri passed away at the end of Au-gust, so this will come as a great shock to you, as it did to us on the Organising Team. Who would have thought that our long, hot summer would come to an end with the un-timely death of my co-chair? What a loss, primarily to her family, but also to our charity as a whole and to the OT members in particular.

On behalf of us all, I extend our deepest sympathy to Peri’s hus-band, David; daughter, Jena; son, Steve and his wife Emma; mum, Shirley; brother, Guy and his family, as well as to the wider family circle. We must not forget Gloria (Auntie Glo), who served on the OT alongside Peri for several years. My words to pay tribute to Peri would be inadequate, so I have asked her friend and former OT member, Vivian, to write her recollections. (page 3) Dr Andrew Murdock, chair of the IBD Interest Group, wrote the following: Peri was a powerful advocate for people with IBD via the local Crohn’s and Colitis UK Network and our own Interest Group. Her voice helped steer initiatives which directly improved care for people with IBD in Northern Ire-land. Peri’s regular contribution to the Interest Group was much valued and I am sure I speak for everyone by saying she will be greatly missed. The IBD com-munity has lost a valued voice. Thomas Hough from the national office wrote: Peri has done incredible work over the last 30 years, and as one of the founding members of the network she has truly left a legacy for the great benefit of those affected by IBD in North-ern Ireland. Her passion, drive and kindness will be sorely missed.

Peri Gillespie 1962 — 2018

Date: Monday 22 October Venue: Cherry Room, The Island Civic Centre, Lisburn Time: Refreshments from 7:30 Meeting: 8:00 Speaker: Dr John Collins, MD FRCP (retired, and our newest OT member) Topic: The long and winding road — reflections on 30 years of treating patients with Crohn’s Disease and Ulcerative Colitis

In addition, Peri’s children, Jena and Steve, have kindly allowed me to print the wonderful trib-ute they paid their mother at her funeral service.

Our best tribute to Peri is to continue the work of Crohn’s and Colitis UK to which she com-mitted so much time and en-ergy. Audrey, Co-Chair with Peri for the last 18 months

Page 2 Crohn’s and Colitis UK Northern Ireland Group Network

As most of you know, Peri spent most of her adult life battling illness. She was diagnosed with Crohn’s Disease in the 80’s. This was a horrible illness, causing Peri much pain with countless operations and visits to hospital. Despite this however, Peri was never once held back. Quite the opposite in fact, as she dealt with it in a way only Peri could – by living her life to the full and seeking to understand the illness simply because she wanted to help others. I think that really shows just how wonderful an individual she was. Despite hav-ing this horrible illness, she just wanted to learn all about it and help others with the disease. Peri was a founding member of the National Association for Co-litis and Crohn's (NACC). She helped to start the organisation 30 years ago and has worked at the forefront of it ever since. She was involved in steering ini-tiatives, running helplines, as well as heading fundraising cam-paigns to raise much needed money for the charity. 30 years of voluntary dedication by Peri undoubtedly improved the care for people suffering with IBD in Northern Ireland. Peri was a regular visitor to Bel-fast City Hospital. Of course, no one likes being in hospital, least of all Peri. She was always on at the doctors to inform her of the earliest date she would be dis-charged. Particular thanks must be given to Graham Turner, Peri’s gastro-enterologist, and his team at the hospital. Peri was extremely fond of Graham and saw him not only as a doctor but as a friend and advisor.

closely followed by Steve on 23rd March the following year. Peri was not your average “earth mother” and didn’t care who knew it! She detested house work and would rather go shop-ping. If you didn’t go out to play on a sunny day, the back door got locked so you were stuck outside, and if you misbehaved there was a chance you’d get whacked with whatever came to hand first, including the remote control and various slippers! (that usually happened to Steve, thankfully!) Despite this, Peri was the best Mum anyone could ask for. She was always there with advice or a hug. She was my best friend and we spoke every day even if it was just about nonsense. Peri was so proud when I passed out and began the career I love. One of Peri’s other proudest moments was this year when her wee son Steve married the lovely Emma. Now there was someone else to cater for Steve’s random eating habits! Peri had one major addiction - shopping! From a very young age she would go into Belfast every Saturday with her Mum Shirley and her beloved Auntie Glo. Not even the troubles in this very country would stop her going into Belfast. They would be hi-jacking cars and buses, but that didn’t deter wee Peri. She shopped all over the world, and if you needed anything, no mat-ter how obscure, she would know which shop to buy it in. Rain or shine Peri and Auntie Glo continued to shop shop shop on an almost daily basis, al-though princess Peri was much too grand to carry an umbrella - that was Glo’s job!

Tribute from Peri’s chil-dren, Jena and Steve

Peri Shirley Gillespie

Peri Shirley Gillespie was born on 22nd April 1962, Easter Sun-day. She was the 2nd child of Shirley, and the late David McConnell. Peri’s older brother Steve sadly died as a baby, but she grew up with her younger brother Guy living a happy child-hood in Glengormley. Peri and Guy were close as children ex-cept when he tortured Peri and chased her with dreaded ba-nanas which she absolutely de-tested. Thankfully, Peri survived to tell the tale when her Dad left her unattended and she fell out of her pram as a toddler, breaking her nose in the proc-ess. Poor Peri was the butt of many crooked nose jokes from then on! In 1977, Peri met the love of her life, David at the local church youth club where she was serv-ing soft drinks from the tuck shop. They married on 21st Au-gust 1982. From that day on Dad was always by Peri’s side. She always came first, and Dad sup-ported her lovingly from the day they met. On 16th January 1986 Peri became a mother for the first time when Jena was born,

Page 3 Crohn’s and Colitis UK Northern Ireland Group Network

Despite Peri’s illness being par-ticularly complicated, Graham and the team did everything in their power to help Peri manage it, so she could continue her life as she wanted to. We as a fam-ily are eternally grateful to them for the time they spent with her right up until the end of her wonderful life. Wee Peri never let her illness hold her back. She was deter-mined to live life to the full no matter how ill she might be and had a wide and varied range of hobbies and interests, most of which she shared with her be-loved David. Peri and David vis-ited over 40 countries together. Peri thought nothing of hopping onto the back of a high-powered motorcycle with my Dad and disappearing for weeks to far-flung locations, often with the bike packed with her copious medicines and fluids, leaving very little room for dad’s be-

longings Her sense of adven-ture continued when her and my Dad bought a boat (by this stage Jena and I had very little inter-est in such a pursuit). They would sail all over Ireland sim-ply living the dream. Peri found another excuse to travel when she decided to sup-port Ulster Rugby. She travelled along with Dad to the mainland, France and Italy Standing Up for the Ulstermen. Just last year they travelled all the way to South Africa for a match! Peri was what you might describe as a “fair weather fan” because she rarely attended Ravenhill. It was just too cold. Peri was rarely at home and filled her days as Rainbow leader, British Legion Rose and

even tried her hand at amateur radio. One of Peri’s more un-usual hobbies was shooting! Once a week she would don her fur coat and head down to the range with Dad and fire her pis-tols. Turns out Peri was an ex-cellent shot. She even had bul-lets that matched her nail pol-ish! Peri loved life. Every day she got up, dressed in something purple, applied her lippy and faced whatever life was going to throw at her with bravery, cour-age and kindness. She never complained, instead spending her life worrying about and looking after others. Even in her final days on this earth, she was alert and always asking about other people. We would like to thank everyone for their support over the past days and weeks. Thanks to the legion riders and roses who brought Peri here today and to all our colleagues, friends, fam-ily and especially the doctors and nurses who looked after Peri throughout her life. You all helped contribute to this lovely woman’s wonderful time on this earth. Our wee Peri epitomised what it means to live every day – and we mean truly LIVE. For every-one here, continue to Just be happy as that’s all Peri ever wanted. Thank you.

I first met Peri over 30 years ago when I attended a Crohn’s and Colitis group meeting shortly after being diagnosed with Crohn’s Disease in 1987. The group was just being formed then and I soon took up the post of Secretary with Peri acting as Treasurer. Derek Rod-gers was our Chairperson. Some of those who started the group are still on the OT today. Peri and I recognised each other from Glengormley, where we both lived, and quickly became very close friends. We met regularly at meetings and be-came more and more involved as time went by and the group membership got larger. We were both raising young families but enjoyed spending our free time helping others with IBD, arranging support in whatever way we could. Each Spring, we travelled to London together to the NACC AGM and to attend training days to be-come volunteers on the new telephone support helpline. Peri knew her way around London well and we al-ways found time to do a bit of shopping while there. Our local members were amaz-ing at fundraising and we were often out in the evenings col-lecting cheques from many var-ied events all over Northern Ire-land. I remember us laughing as we often got lost trying to find some of the venues if they were in areas we were unfamiliar with. This was in the days of our ‘Troubles’ when there were no Satellite Navigation systems or mobile phones. Continued on page 4

Tribute from Vivian Apsley

Please note that the office of

Crohn’s and Colitis UK has relo-

cated to Hatfield, Herts, but

contact details are unchanged.

Page 4 Crohn’s and Colitis UK Northern Ireland Group Network

Profile of our newest OT mem-

ber, Dr John Collins

Dr John Collins graduated in Medicine from Queen’s Univer-sity in 1976 and trained in gen-eral medicine and gastroenterol-ogy in the Royal Air Force, the Northern Ireland teaching hospi-tals and The Medical College of Wisconsin, USA. He was ap-pointed as a Consultant Gastro-enterologist to the Royal Victo-ria Hospital in 1990. With his medical and surgical colleagues, he helped to improve services to patients with GI disorders and modernise the training of junior doctors. He was actively in-volved in research and has been author or co-author on 74 publi-cations and 3 text books. He was President of the Irish Soci-ety of Gastroenterology 1999-2002 and Secretary of the Royal College of Physicians of Edin-

Dr Collins will be the guest speaker at our October meeting. We look forward to hearing about developments in the treatment of IBD, as he brings a wealth of experience of treating countless Northern Ireland pa-tients over three decades.

Continued from page 3 We would get anxious as we found ourselves lost on dark nar-row roads or nearing areas of Northern Ireland best avoided. One time the soldiers on patrol stopped us, asking us where we were going. They searched our car, then us, and - after determining we were not a threat - finally gave us direc-tions to our destination. We’d always find a warm welcome waiting for us at the events we visited. The money raised over the years has been magnificent. Peri loved many things: she loved her husband, David, and her children, Steve and Jena. She shared many inter-ests with David and would be off on the back of his motorbike going all sorts of places with him. She loved following Ulster Rugby, even travelling as far as South Africa to support them last year. She loved cats, living with 2 or 3 feline companions at a time. She loved jewellery and had many different colours of watches to match whatever out-fit she was wearing. She loved shopping and could do so all day long - I don’t know how she got the energy, but she did. Peri loved the colour purple, she loved lipstick, she loved Cliff Richard, and went with her aunt to many of his concerts. She rarely sat in the house, always out doing something some-where. She loved travelling and got away to many countries with David, mostly on the back of the motorbike, despite having to carry all her medicines and feeding equipment, etc. I am so glad she filled her short life with all the things she did do. Her illness never held her back. She was an inspiration to us all.I will miss Peri: she made me laugh, she wrote long emails which I

Attention Students!

Are you starting university or college this year and wondering how you will cope if you have Crohn’s Disease or Ulcerative Colitis? Check out the Crohn’s and Coli-tis UK website.

Students with IBD: a guide for students

Students with IBD: a guide for universities and colleges

You could also qualify for a grant to cover education costs. These are payments of up to £1000 that you can use for specific needs.

loved to read, she was gener-ous, she was kind, she was thoughtful and she will leave a huge gap in my life. I always admired her courage in coping with her illness. She never com-plained. She just got on with her life and lived it to the full. Rest in Peace, Peri.

burgh 2004-2009. He has a long interest in treating patients with inflammatory bowel dis-ease and was on the national Advisory board for mesalazine and infliximab for many years. He promoted the use of biologi-cal drugs in Crohn’s Disease and the training of IBD specialist nurses. He was an Associate Postgraduate Dean 2008-2016, responsible for the support and career guidance of junior doc-tors. Since his retirement he has been involved in voluntary work in several charities and he is de-lighted to be involved in Crohn’s and Colitis UK.

Page 5 Crohn’s and Colitis UK Northern Ireland Group Network

FUNDRAISING & DONATIONS

Breege Clarke recently ran the Dublin Mini-Marathon, raising a magnificent £1,197.37.

Justyn Galloway hosted a golf day at his club, raising £1,620, with some generous individual donations. These included £120 from Mr Ray O’Hara, Director of Ray Gra-ham’s Building Supplies, New-townards; £200 from Mr James Turner, Di-rector at O’Reilly Stewart Solici-tors, Belfast; and £500 from Mr Brian McFarland, Managing Director of McFarland Associates Ltd, Belfast.

GOLF DAY at Clandeboye Golf Club

Colin McClinton continues to give his customers an opportu-nity to donate to us through the collecting box on the counter of his fish and chip shop in Lam-beg, with two recent donations of £65 and £50 respectively.

Andrew Watson and his col-

leagues in EY Absolute (Ernst

and Young) held a sweepstake

during the World Cup, which

raised £80 for us.

Hazel McIlveen ran the London

Landmarks Half Marathon, do-

nating £150 to our Network.

Mrs FV Russell: £50

71 Engineers Regiment: £200

Michael Bowes £161 (collecting

box)

We are grateful to so many of you who have generously given of your time and energy to raise funds for us. Thank you sin-cerely from the Organising Team. On page 7 you can read how some of this money is spent in Northern Ireland for the benefit of patients. We also organise Family Days for our young members and their parents and siblings, and we hope to host one before the end of the year.

Bequest from the estate of

Louise Hutchinson

Louise Hutchinson had been a member of Crohn’s and Colitis UK (formerly The National Asso-ciation for Colitis and Crohn’s Disease). Sadly, Louise lost her life at a young age, but, such was Louise’s character, that she made provision in her will for a number of charities to benefit after her death. We are indebted to Louise’s par-ents, Tom and Marion, the Trus-tees and Executors of her will, for ensuring that Louise’s wishes were discharged.

Louise specified that her be-

quest of £6,635.16 should be

used for the benefit of IBD suf-

ferers in Northern Ireland.

Page 6 Crohn’s and Colitis UK Northern Ireland Group Network

30th BIRTHDAY PARTY

The new signage continues to be rolled out across Northern Ire-land. Valerie and Peri are seen here in Translink Bus and Train Station, Belfast, at the launch of their signage, and below, at Belfast International Airport.

Our AGM and 30th birthday party was held in the Dunsilly Hotel in June.

Peri presented the annual ac-counts, and Audrey gave the an-nual report, after which Dr Turner carried out the election of OT members. We were pleased to welcome our Medical Advisor, Dr Graham Turner, and IBD nurse specialist, Evelyn Warwick. Graham and Evelyn answered a number of wide-ranging questions which had been submitted by mem-bers. To celebrate our birthday we had a delicious cake, washed down with Shloer, and one of our young members, Erin Scott, provided cup cakes, beautifully decorated.

Our founding chairman, Derek Rodgers, and his wife, Kathleen, joined us, as did Vivian Apsley and Janet Lunn, who were also founding members.

Vivian found this grainy photo of the committee (as the OT was called then) but what year was it? Certainly in the 90s. Front row: Una Smart, Peri Gil-lespie, Audrey Derby, Gillian Rodgers, Michael Harrison. Back row: Derek Corbett, Vivian Apsley, Colin Russell (surgeon and our medical Advisor), Derek Rodgers

As an aside, see Erin’s justgiving page. By the time you read this newsletter, Erin’s fiancé, Mi-chael, will have run the Belfast Half-Marathon, but her justgiv-ing page will still be open. You can read Erin’s IBD story there.

Ards and North Down Council have included Braille in their signage.

Page 7 Crohn’s and Colitis UK Northern Ireland Group Network

We are now in a position to do that, and at our recent OT meeting it was agreed that £20,000 should be earmarked for research.

PATIENT COMFORT When the IBD Nurse specialists were first appointed we gave each of them £1,660 as a start-up donation to purchase items such as a laptop and business cards, which their Trust could not provide. Recently we were able to pledge £2,000 to each of the nurses primarily to purchase items for patient comfort and/or assist them in their care of patients, though not all Trust IBD nurses have taken up the offer yet. Some of the items that were suggested to be beneficial were surface pro laptops, reclining chairs for patients receiving bio-logic infusions, televisions for waiting rooms, a bookcase for a library in the clinic, torso and head model to educate patients, and a dedicated fridge for IBD patients in the infusion suite. IBD nurse Noreen Kennedy and Gastroenterology Pharmacist Alan Wilson in the Belfast Trust expressed their thanks and sent the following contributions.

Noreen said: Shortly following taking up my post as an IBD Nurse I was given a Surface Pro from CCUK NI. This has been an invaluable piece of equipment and has aided both my learning and abil-ity to deliver teaching sessions as part of my role. I am about to undertake a dis-tance learning IBD module at Salford University for the next year and know that this equip-ment will be invaluable. Can I say a massive thanks to Crohn’s and Colitis UK NI.

First of all, many thanks to Crohn’s and Colitis UK NI for the portable device.

We had a tremendous response for our patients moving to biosimilar biologic agents in Bel-fast and that meant we were able to increase the number of dedicated staff that work with IBD patients. There was, how-ever, a lack of physical office space available. Using these de-vices means that we can be con-nected to the other team mem-bers, regardless of our physical location. We now have access to patient records and bloods remotely and are able to discuss solutions with patients’ consultants with-out the necessity of having a physical base.

This connectivity will help us all in the IBD team drive the ser-vice forward by increasing our speed and quality of communi-cation. Alan Wilson

Donation to Crohn’s and

Colitis UK Research Fund

Before Peri passed away she said that we had enough funds to be able to make a generous donation to our national office, but because Patricia hadn’t taken up her role as new treas-urer, we hadn't got around to making the transaction.

We cannot fund research di-rectly in Northern Ireland, as our pool of money would not be sufficient, and, more impor-tantly, those wishing to under-take research are required to submit their proposals to Crohn’s and Colitis UK. You can read more about cur-rent research projects on the Crohn’s and Colitis UK website.

For more information on this event, or to register, please e-mail anne.demick@iasupport.org or phone 077 8539 3516 by 5th October.

Ileostomy Association event

Page 8 Crohn’s and Colitis UK Northern Ireland Group Network

CONTACT US Northern Ireland Network

Chairperson: Audrey Derby

Website: www.crohnsandcolitis.org.uk/ni

Email: ni@networks.crohnsandcolitis.org.uk

Crohn’s and Colitis UK

First Floor, Helios Court, 1 Bishop Square, Hatfield

Business Park, Hatfield, Herts, AL10 9NE

enquiries@crohnsandcolitis.org.uk

www.crohnsandcolitis.org.uk

Charity registered in England Number 1117148 Charity registered in Scotland Number SC038632 A company limited by guarantee in England: company number 5973370

HELPLINE

Our helpline is a confidential service providing information and support to anyone affected by Crohn’s Disease, Ulcerative Colitis and other forms of Inflammatory Bowel Disease (IBD).

Our team can: help you understand more about IBD, diagnosis and

treatment options provide information to help you to live well with your

condition help you understand and access disability benefits be there to listen if you need someone to talk to put you in touch with a trained support volunteer who

has a personal experience of IBD

Contact us by:

Telephone: 0300 222 5700*

Monday, Tuesday, Wednesday and Friday - 9 am to 5 pm

Thursday - 9 am to 1 pm

Email: info@crohnsandcolitis.org.uk

Web Chat (Live Online): see our website for details

* Calls to this number are charged at a standard landline rate or may be free if you have an inclusive minutes’ package. Calls may be recorded for monitoring and evaluation purposes.

The Northern Ireland Network has made every reasonable effort to ensure the content of this newsletter is accurate, but accepts no responsibility for any errors or omissions. The views of the contributors do not necessarily reflect the views or policies of Crohn’s and Colitis UK and no reference in this newsletter to any product or service is intended as a recommendation.

GROUP ORGANISING TEAM MEMBERS

Treasurer: Patricia Henderson

Social Media: Ruth Kyle, Zoe McAteer

Valerie Boyd Steven Kennedy

Kim Montgomery Rosemary Patterson

Brian Ritchie Una Smart

John Collins, MD FRCP

Medical Advisor: Dr G Turner MD FRCP

/CrohnsColitisNI @CrohnsColitisNI

IBD NURSE SPECIALISTS

Mary Kane, Northern Trust (Causeway)

Jacqueline Kearns, Northern Trust (Antrim)

Evelyn Warwick, Belfast Trust

Noreen Kennedy, Belfast Trust

Caroline Collins, Belfast Trust

Ruth Hall, Southern Trust (Craigavon)

Stephanie Dunn, Western Trust (Altnagelvin)

Gayle Martin, South Eastern Trust (Dundonald)

Tracy Close, paediatric nurse specialist, Belfast

Trust (Royal Belfast Hospital for Sick Children)

Newsletter printed by

ILEOSTOMY & INTERNAL POUCH SUPPORT GROUP

e-mail: info@iasupport.org www.iasupport.org

Welcome to all new members. We do not receive

membership updates, so we are unable to send

new members a ‘welcome’ e-mail.