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SUMMER 2018Issue 32

Clyde Network

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IN THIS ISSUEAGM Report 1-3The Great Gutsby: Feels like Fatigue 3

Alliance Workshop 4

IA Open Day 4

Cross Party Group 5Patient Involvement in Research 6Stirling Golf Fundraiser 7

CLYDE NETWORKPUB QUIZ

CLYDE NETWORK AGMTALK BY MICOL ARTOM ON FATIGUE IN IBDMicol Artom is a psychologist working on management strategies for fatigue in IBD at King’s College London. Her talk encompassed her work looking at the impact of fatigue, its variability in patients and ways in which her research may help.

Fatigue is experienced by 81% of IBD patients in a flare and, even in remission, fatigue is still experienced by 41% of patients. And yet fatigue is not addressed in clinics. One of the reasons is that it is hard to address, for patients to ask about and to assess what exactly fatigue is, as there are no simple ways to measure

this. It is different from simply being tired. Fatigue is an overall weakness or exhaustion that is hard to measure. In addition, it is part of the IBD condition that is hard to manage, where clinicians have little knowledge on how to implement strategies for improvement. They are not yet able to offer solutions to this problem and clinic consultations are also time limited, with a focus on other symptoms.

Micol devised a support package involving tasks and therapists to help manage fatigue in IBD patients, and compared this to patients given only the support information sheets

Where? The Rock, 205 Hyndland Road, Glasgow G12 9HEWhen? Wednesday 25 July, 7:30pmCost? Free (donations welcome)

We’ll be making up a couple of teams and would love members to come along to watch or join in.

Contact us on [email protected] for more information. No need to book, just turn up!

WALK IT

EDINBURGH

Some of our members

took part in the event

on 24 June

WELL DONE TO ALL!

Crohn’s and Colitis UK Clyde Network Newsletter

from Crohn’s and Colitis UK.Her findings were that those using the support manual, who followed a plan to help manage fatigue, noticed a change in fatigue levels. They generally felt better mentally, and the support system made a difference to their lives. Unfortunately, this strategy is too costly to implement across the country, so Micol’s new research is taking the best practice from the previous work and directing a new development incorporating fatigue, pain and toilet urgency management. This is the ‘IBD boost’ interactive programme that she hopes to develop and make available online.

Part of the problem with fatigue is its complexity. Different people experience it in different ways. For example it can be chronic; always there at some level, or acute; occurring suddenly and intensifying after some event, like physical exertion or after an infection. Onset variations exist where fatigue may be connected to IBD diagnosis, or may have existed before, or even only after some years post-diagnosis.

Micol stated that fatigue impacts in different ways. Here are some of the metaphors that sufferers use to describe their fatigue – ‘heavy as lead, porridge, brain fog, dream world and zombie’. Fatigue makes you feel shattered, alters your concentration and memory, and renders you unable to physically do normal things.

An IBD fatigue scale developed by Micol enables patients and clinicians to assess how fatigue affects them, and gives an indication of its severity and impact. Finding a way to assess this aspect of IBD should bring about a much-needed priority for clinicians to ask about fatigue in clinics and gather data on the demographics of fatigue, such as its effect following surgery, or socio-economic factors, gender, etc. Importantly, it allows patients to be assessed for factors that might contribute to fatigue, such as anaemia, and to ask if patients have sleeping problems or suffer from anxiety – to see if these can be treated.

By addressing fatigue, it is hoped that strategies to

support patients will be put in place. For instance, to assess psychological or behavioural factors, to help patients manage stress, give relaxation therapy, identify negative thoughts, plan activities better, etc. Micol’s research trial that supported patients to manage their fatigue did help patients, but she emphasised that as much medical intervention as possible should be carried out beforehand, so that IBD is controlled first. Fatigue can be a residual symptom after this.

Since fatigue is subjective and invisible it is hard for IBD sufferers to explain their needs or any fluctuation in tiredness. The post-talk discussion included asking how to involve employers, so that they better understand the problem and allow for their employees’ individual situations to be considered. For instance, some people find mornings difficult and flexible working arrangements might accommodate this. Fatigue is so debilitating that any approach to address this, to manage it better, to communicate what it is like, to help employers understand, or to improve services, is surely to be welcomed.

An IBD fatigue rating scale to check your own fatigue levels can be found online. See www.fatigueinibd.co.uk/questionnaire

Since her talk, Micol has gained her PhD based on this research. We congratulate Dr. Artom.

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THE GREAT GUTSBY 9: FEELS LIKE FATIGUEFatigue is seemingly at the base of all chronic conditions. There is no rest. Exhaustion creeps through you in everything you do. You want to sleep for a thousand years. Maybe then you’d wake up refreshed, if you can get to sleep at all, that is.

Every day you operate at a fraction of your best. Productivity is low; do one constructive thing then rest. You are simply functioning, but not to the level or standard you desire. You can appear normal, but the fatigue is lurking under the surface; the ultimate

invisible disability. You sleep more than a normal person, stop and rest more often, recharge those batteries if and when you can. It is worse than simply tiredness and remains when you are awake.

Fatigue is a constant. I was going to say it is variable, and certainly, on some days you can do more than on others. But doing more always comes with a price to pay. You are never rid of the fatigue. It is attached to IBD like an unwanted parasite sucking the life out of you. It makes you waddle, not walk unconsciously,

as though you’ve climbed too many mountains and your muscles ache. It turns your brain to treacle, so thoughts cannot form or compute, where neuronal signals fail to connect.

Nobody knows how this unseen creature became attached to you, or how to get rid of it. Maybe it is telling you, ‘Slow down. You are chronically inflamed so stop antagonising your poor body’. Maybe you have to work carefully around it. Maybe if IBD was cured it would go away.

CLYDE NETWORK AGM REPORTLAUGHTER YOGA WITH JO BLUETTIf you’ve been to one of Jo’s sessions on Laughter Yoga you will know that it is a ‘fun workout’. She began by saying that we may be conditioned to think that laughter only comes if we find something funny. However, you can pretend to laugh too. She then demonstrated this - and showed that it is contagious.

Laughing helps change areas of the brain and releases endorphins; chemicals with natural anti-depressant, painkilling and anti-inflammatory properties. In a way, you can think of laughing as a daily medicine, involving deep breathing, diaphragm muscles and additional oxygen, thus releasing stresses. Jo went on

to say that regular, sustainable periods of laughter per day (for a minimum 10 minutes) bring the greatest benefits. Not only are endorphins released, but blood and lymphatic flow are boosted (the latter in a system that carries immune cells around the body).

The workout itself involves a warm up to loosen up, and lots of activities and actions whilst chanting ‘ho’ or ‘ha’ or ‘he’, stretches, pretend actions and exclamatory comments like ‘I’m alive’. All this is designed to create an enthusiasm for laughter. While it is tiring to laugh continually, Jo suggested training to build up to laughing for 10 minutes at a time, chuckling

to yourself or with others. She also said that practising laughter medicine has reduced her own need for pain relief.

For IBD sufferers it is a good workout when you have limited energy resources as it lets you exercise within your limits. Laughter Yoga can be an individual exercise; something that brings aerobic benefits, which you can do sitting down. Attending Laughter Yoga sessions is a social event bringing people together, so that they also benefit by combating loneliness, whilst 'catching the laughing bug’ from each other. Come along the next time Jo holds a session and give it a try. Or you can find her at www.laughterforhealth.co.uk


ALLIANCE'S SELF MANAGEMENT WORKSHOP by Edmund Murray

I was invited along as a patient expert in April to a Guided Self-Management Workshop, organised as part of the Scottish Government's Modern Outpatient Programme. In attendance were several other IBD patient experts and representatives from various IBD services from all over Scotland, Crohn's and Colitis UK Head Office and The Health and Social Care ALLIANCE.

The day began with Dr. Ian Arnott from Western General Hospital in Edinburgh explaining how the Modern Outpatient Programme will bring about greater collaboration between Primary and Secondary Care and make everyone's patient experience in future a more efficient one. Next, Nancy Greig from Crohn's and Colitis UK took us through the plan for the remainder of the day and the hoped-for outcomes from the workshop.

Firstly, four groups were created and the patient

experts took their respective groups through their own self-management strategies and how they keep themselves as well as possible. This, hopefully, gave the non-patients attending a better understanding of the issues that we sufferers experience daily. All the patient experts had very different stories to tell about our IBD journeys and experiences of the healthcare system, thereby giving an indication of how treatment options and self-management can impact upon our well-being.

After that, the groups reconvened into two larger groups, each looking at two separate areas: the group I was in considered how to improve IBD service design and implement personal care plans while the other group looked at an IBD flare card, an idea created by the team at the Royal Alexandra Hospital in Paisley. The flare card is a pocket-sized fold-up reference

guide, carried by IBD patients to give them readily available advice during a flare to help them back into remission. It has been a great success with IBD patients at the RAH and, following feedback from this session, may potentially be rolled out across all IBD services in Scotland and even the entire UK. My group looked at the best way to structure an IBD service and implement personal care plans within these services to give a better and more efficient service for IBD patients in future.

Following these discussions, each group presented their findings and described what they had learned from the day. The detailed ideas were documented throughout the day and will be reviewed by the Scottish Government to study what was discussed and hopefully implemented in future. There will be follow up discussions as things progress so I hope to keep everyone updated as they arise.

Take action for better signage on accessible toilets at travel companies across the UK!

Travel with IBD mobilised the travel industry to install new accessible toilet signage, raising awareness that not every disability is visible, and making a real difference to people living with Crohn's and Colitis.

Due to the huge support we received from the incredible Crohn’s and Colitis community, four of the major

supermarkets have now installed the not every disability is visible signage on accessible toilets across their network nationwide.

We would now like to see this change happen again in all UK airports, rail stations and service stations - visit crohnsandcolitis.org.uk for more information and to take part in the campaign!

The Travel with IBD campaign has won the 2018 Communique 'Excellence in Healthcare Collaboration and Partnerships' award.


IA OPEN DAY

West and Central Scotland Ileostomy Association held an Open Day in Stirling’s Albert Halls on 28th April. Crohn’s and Colitis UK Clyde Network, among others, took an information stand to the event.

There were talks and participatory sessions with Martin Stepek on Mindfulness and Jo Bluett on Laughter Therapy. Dr Ruth McKee, consultant surgeon at Glasgow Royal Infirmary (and President of WCSIA) and stoma nurses were on hand to discuss problems and the stoma company reps manned information stalls.

Tea, coffee and lunch were provided and, despite a lower-than-hoped-for attendance, the day was very successful, with many attendees thanking the volunteers for their help and information.A JOINT AWAY DAY TO THE BO’NESS

AND KINNEIL RAILWAY AND THE KELPIESWest and Central Scotland Ileostomy Association is organising a joint away day with the Clyde Network, which will take place on the 30th September 2018. The group will visit the Bo’ness and Kinneil Railway for an afternoon tea and the Kelpies in Falkirk.

The arrangements are to meet at the Bo’ness and Kinneil Steam Railway (Bo’ness Station, Union St, Bo’ness, EH51 9AQ) at 1.30pm for 2pm start.

There are only a limited number of spaces available so if you're interested please register your interest as soon as possible - contact the IA's Jacqui O'Donnell on [email protected] or 07572 542476.

CROSS PARTY GROUP REPORTThe latest Cross Party Group on IBD took place on Wednesday 23rd May, with a focus on the role of IBD Nurses.

Firstly, three patients, two adults and one paediatric, described their care and the role of IBD Nurses. Each gave very full and frank descriptions of their care and it was clear that they had experienced a far-from-uniform service. Some experiences left room for improvement while others showed how good an IBD service can be, but what was made clear by all three was that IBD Nurses played a vital part in their care and are an essential part of the whole process.

Next, Isobel Mason, the charity's Service Development Lead for IBD Nurses, spoke about IBD Nurse numbers throughout the UK and how the charity supports efforts to increase those numbers for the future. Given

ever-increasing pressures on the NHS this is obviously not a simple task and it will take time and much collaboration between the NHS and Government to find the resources required to make IBD services as efficient and uniform nationally as possible.

Finally we heard from some front-line NHS staff. Dr. Graham Naismith from the RAH spoke about the consultants’ view of IBD Nurses. He depends heavily on IBD Nurses managing the ever-increasing workload in his department and described a departmental caseload increase of 108% in the last decade. Finally, Allan Boal from the RAH and Vicki Garrick from Glasgow Royal Children's Hospital spoke about the RCN's Scottish IBD Nurses’ Network and how it helps the 61 IBD Nurses in Scotland share best practice and experiences to help improve the standard of care that IBD sufferers receive in Scotland.


PATIENT INVOLVEMENT IN RESEARCH DAY by Edmund Murray

I was invited to London in May by Crohn’s and Colitis UK to attend the inaugural IBD Patient Involvement in Research Day, held at University College London. A number of organisations took part, raising awareness of the variety of research on IBD taking place and the importance of patient involvement in this research. Along with prominent figures from within the IBD research sphere there were patient representatives from all over the UK. Firstly, Ailsa Hart, Professor of Gastroenterology at St. Mark's Hospital and Christine Norton, Professor of Nursing at King's College, explained the role of patient involvement in research. This ensures that the right research reaches the right people who ask the right questions. Asking the right questions leads to the inception of research followed by the delivery and dissemination of that research.

The group then split into two streams: one for Crohn's Disease and one for Ulcerative Colitis. Being an UC sufferer I attended the UC stream. My group’s initial talk was by Gordon Moran from the University of Nottingham, who spoke about various non-invasive approaches to identifying the causes of fatigue in IBD patients. Next, Christine Norton spoke about the IBD Boost project which

Micol Artom covered at the Clyde Network's recent AGM (read the report from the meeting on pages 1 and 2).

After lunch and networking with other attendees, Omar Faiz, Clinical Director of St. Mark's Hospital spoke about the differences between the rates of reconstructive (usually j-pouch) surgery in England and Sweden. In England 33% of those who have reconstructive surgery for UC opt for no permanent stoma but in Sweden this is 44%. The reason for this difference is apparently down to the amount of information provided to patients before surgery which allows them to make a correct personal decision.

The next talk was on the PREdiCCt (The Prognostic Effect of Environmental Factors in Crohn's and Colitis) study run by the University of Edinburgh. This is the first study of its kind, specifically directed towards understanding how environmental factors and the gut micro-organisms influence IBD flares and recovery. The PREdiCCt study hopes to recruit 1500 people in remission from Crohn’s Disease or Ulcerative Colitis from 28 inflammatory bowel disease clinics across the UK.

After coffee break, the final session covered two very different topics. Firstly, Tariq Iqbal, Consultant

Gastroenterologist at University Hospital Birmingham, talked about the STOP-COLITIS clinical trial: assessing the feasibility of faecal transplants as a possible treatment for UC sufferers. While not the most glamorous subject I did learn that there are up to 2kg worth of bacteria within the gut which could circle the earth two and a half times if laid end to end. If these bacteria are not in balance, this can cause an increase in IBD. The final talk, by Professor Andrew Hart from the University of East Anglia was on his ‘proof of concept’ study into whether excess sulphur in the diet impairs the response to drug treatments for UC.

The Crohn's group covered a similarly wide variety of topics from fertility to dietary management apps and issues with Anal Fistulae.

It is hoped that this will become an annual event, held on/near World IBD Day on the 19th of May. Speaking to David Barker and Helen Terry, [the charity's Chief Executive and Director of Policy and Research respectively], afterwards, I found them impressed by both the breadth and quality of research within the IBD sphere. I certainly learnt much more about IBD, and UC in particular, and was heartened to see so much happening to help improve the lives of sufferers.

FIND OUT MORE ABOUT IBD RESEARCHwww.crohnsandcolitis.org.uk/research£5.2 million has been awarded to over 80 groundbreaking research projects since 2008


STIRLING FAMILY FUNDRAISER FOR CROHN’S AND COLITIS UK & CICRA (Crohn's in Childhood Research Association)by the Oates family

In memory of our beloved son and brother, Brian Oates, the Oates family organised a range of activities to raise funds for Crohn’s and Colitis UK. Brian died from cancer aged 54 on 3rd May 2017. He left behind a daughter Ciara, two granddaughters, his partner Moyra, his parents John and Catherine, siblings Catriona, Desmond and David and countless friends and extended family.

From his late thirties Brian suffered quite severely from Crohn’s disease which changed his life significantly. Very little of the condition was known to his family at the time of his diagnosis and Brian bravely fought and managed his condition, often keeping his suffering and discomfort hidden from his loved ones. The Brian Oates Memorial Golf tournament took place on Sunday May 13th

with over 60 golfers enjoying a stunning day on Stirling Golf Course.

Some exceptional prizes were awarded and won at an auction, raffle, and silent auction that took place in the evening. Brian’s father John sings in the local Torbrex community choir, which also raised £500 through a charity concert which took place on May 11th. Brian’s sister Catriona ran in the Stirling half marathon in April and raised £1989 to add to the total.Brian’s brother David and sister in law Sacha set up an online donation account which raised £1570, adding to the total. Other efforts included diverse events such as a fashion-styling evening and a tablet sale!

All in all, the family is delighted that a total of £14000 was raised for two charities; Crohn’s and

Colitis UK and CICRA, to help support sufferers and work towards a cure for this crippling disease. The money was handed over on June 22nd at Stirling Golf Club to representatives of Crohn’s charities (Crohn’s and Colitis UK and CICRA), with Catherine and John Oates, Brian’s parents, present, as well as Kenny Monaghan, club professional at Stirling Golf Club; Brian’s sister, Catriona; sister in-law Tracey and brother David. The family would like to extend their heartfelt thanks to all who have so generously donated to this cause, and supported us over the last difficult year. We would also like to sincerely thank the staff at Stirling Golf Club for their generosity, kindness and support in hosting the Brian Oates Memorial Golf Competition and the handover event.


CONTACT USCLYDE NETWORKChair: Edmund Murray

Website: www.crohnsandcolitis.org.uk/clydeEmail: [email protected]

CCUK.clyde @CrohnsColitisCL

Crohn’s and Colitis UK 45 Grosvenor Road, St Albans AL1 3AW

[email protected]

Charity registered in England Number 1117148Charity registered in Scotland Number SC038632A 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 pmThursday – 9 am to 1 pm

Email: [email protected]

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.

NEWSLETTEREditor: Janice Taylor ([email protected])Design: Jana MoravcovaPrint: Lanarkshire Office Supplies, Hamilton

The Clyde Network has made every reasonable effort to ensure the content of this newsletter is accurate, but accepts no responsibility for any errors or omission. 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.

If you have received this newsletter by post and would be happy to receive future editions by email please provide your name, membership number and email address to [email protected] will save the network valuable funds which can be used to benefit all those affected by Inflammatory Bowel Disease.

DATES FOR YOUR DIARYCLYDE NETWORK PUB QUIZ25 July 2018, 7:30pmThe Rock, 205 Hyndland Road, Glasgow G12 9HE GlasgowJoin us for a pub quiz at The Rock - bring family and friends, get a team together and come and test your knowledge!

ILEOSTOMY ASSOCIATION AND CLYDE NETWORK AWAY DAYTo the Kelpies and Bo'ness and Kinneil Railway

30 September 2018, 2pmMeet at Bo’ness and Kinneil Steam Railway at 1.30pm

Cost: £5 per person Please contact Jacqui from the IA to register: [email protected] or 07572 542476

COFFEE MORNINGIn October in Stirling - please keep checking our website and Facebook for more information.

CLYDE NETWORK CHRISTMAS LUNCHSaturday 8 December 2018Adelaide's, Bath Street, GlasgowWith talks and demonstrations by Martin Stepek (mindfulness) and Jan Kauskas (tai chi)

Please keep checking our website and Facebook page for updates on our meetings and activities. The details of our events may change at short notice.

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