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NEW REPORT Crohn’s and Colitis Care in the UK
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One step at a time
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Do you have a story to share? We hear from people every day who rely on the Crohn’s and Colitis community for advice and support.
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Your experience can be helpful and inspiring – use your voice today.
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Fill in our form to tell us about how Crohn’s or Colitis has impacted your life, and how we have helped you along your journey.
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The more stories we have, the more we can continue to grow our community and reach out to those who need us.
“I hope that my story speaks to those that are new in their Crohn’s and Colitis experience and are looking for reassurance that their life will go back to normal. I can also share my experience grappling with the mental health aspects of this condition.” Elliot, living with Colitis If you are unable to use our form or don’t wish to do so, please call our team on 01727 734478 or write to us at: Share Your Story, Crohn’s & Colitis UK, 1 Bishops Square, Hatfield, AL10 9NE
www.crohnsandcolitis.org.uk/share-your-story
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Keeping in touch, more than ever before
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We’re delighted to bring Connect back into print
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On the cover: Lucy Taffs and Sophia, taking part in My WALK IT 2020
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WE WANT
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Everybody to understand Crohn’s and Colitis
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To support and empower people
High quality, sustainable clinical care
Early and accurate diagnosis
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elcome to the new-look Connect magazine. After an enforced break last year, it’s great to return with this spring 2021 issue, jampacked with stories about you, our members, and the work of Crohn’s & Colitis UK. I hope you find it interesting and inspiring. You will receive this magazine twice a year – in spring and autumn – in addition to the monthly Connect Now emails that we introduced last year to keep you up to date with our work. Together, they will enable us to keep in touch with you even more than before the pandemic. You may notice that the format of Connect has changed. As part of our sustainability work, we want to produce the magazine in a more environmentally friendly way. So, we’ve reduced the size of the pages, but kept the wide range of articles that we know members enjoy. Please recycle your envelope and the magazine in your recycling box. The launch of the Crohn’s and Colitis Care in the UK report has been a focal point of our work over the past year. This vital study provides critical information to change the future of Crohn’s and Colitis care. We’d love it if you could help by emailing your political representative to share the report and ask them to campaign for change. See page 8 for details. Following the success of last year’s virtual event, I am also thrilled to announce the launch of My WALK IT 2021. Join us in June wherever you are in the country. I’ve already signed up, so ‘see’ you then! As shops reopen and activities start to get going again, we know that some of our community may be anxious about returning to work, or getting back to their everyday tasks. Our helpline is open 9am to 5pm, Monday to Friday (except English bank holidays), should you have any questions or need support. Email helpline@crohnsandcolitis.org.uk or call the helpline on 0300 222 5700. I hope you enjoy this issue of Connect. As always, if you have any feedback, please contact us on connect@crohnsandcolitis.org.uk. Thank you once again for your continued support.
Sarah Sleet, CEO of Crohn’s & Colitis UK
WE ARE CROHN’S & COLITIS UK, a national charity fighting for improved lives today – and a world free from Crohn’s and Colitis tomorrow. Right now, an estimated 500,000 people in the UK are living with a lifelong disease that many people have never heard of. And the real number could be almost double that. Because of the stigma and misunderstanding surrounding these diseases, thousands of people are suffering in silence. But they’re not alone. We’re here for them. To improve diagnosis and treatment, and to fund research into a cure; to raise awareness and to give people hope, comfort and confidence to live freer, fuller lives. We’re here for everyone affected by Crohn’s and Colitis. Crohn’s & Colitis UK does not endorse or recommend any of the products mentioned or advertised.
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Everyone needs a Will to set out their wishes. If you’d like to know more about how you could leave a gift to Crohn’s & Colitis UK in your Will, we’d love to send you our free brochure.
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To request your brochure go to: www.crohnsandcolitis.org.uk/brochure Or call 01727 734 485 and ask to speak to Sophie
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Contents SPRING 2021
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CONNECT Our address is: Crohn’s & Colitis UK 1 Bishops Square Hatfield Hertfordshire AL10 9NE
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connect@ crohnsandcolitis.org.uk General enquiries info@ crohnsandcolitis.org.uk Online www.crohnsandcolitis.org.uk
Latest updates 4
Need to know News from your charity Research bulletin Experts are studying how coronavirus has impacted those on biologic medicines Time for change IBD UK’s new report into Crohn’s and Colitis Care in the UK
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Membership and general enquiries 01727 830038 Connect is the magazine for Crohn’s & Colitis UK. Registered charity: England 1117148 Scotland SC038632
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Editor for Crohn’s & Colitis UK Nicky Winward Editorial board Claire Walsh, Jaina Engineer, Sophie Bassil, Mark Thistlewood
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Sub-editors Sian Campbell, Andrew Littlefield Art Director John Pender Published by Think on behalf of Crohn’s & Colitis UK All photography and illustrations © Crohn’s & Colitis UK, Alamy, Getty or Shutterstock unless stated Think Suite 2.3, Red Tree Business Suites, 33 Dalmarnock Road Glasgow G40 4LA www.thinkpublishing.co.uk
Features 12 This is My WALK IT! Three of last year’s walkers share their stories 16 Here when you need us Behind the scenes at our helpline 18 The new world of work Our new campaign to make workplaces more inclusive
Editor Emily Rodway emily.rodway@ thinkpublishing.co.uk
Contributing editor Caroline Roberts
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Member pages
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24 Your stories Emma and Krystyna 26 Get involved Fundraising, campaigns 30 Your questions answered Advice from our expert panel 32 My life Award-winning fundraiser JJ
JAMIE GRAY; NICOLA ROSS
ISSN 2059-8408
#ittakesguts
Show us your events, fundraising, volunteering and life with Crohn’s or Colitis
Take part in My WALK IT 2021. Plan your own 5k, 10k, half marathon or marathon.
Find out more at www.mywalkit.org.uk
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NEED TO KNOW
Important updates from our world right now
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Funds for new research Grants of up to £100,000 for novel projects to improve IBD care
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“This year, we are particularly interested in research focused on giving the right treatment at the right time,” explains research programme lead Nikul Bakshi. “We are looking for original, novel research that helps people live well with their condition, and gets us closer to a world free from Crohn’s and Colitis.” Researchers have until Friday 28 May to apply for this year’s funding.
For many years, we’ve been funding research to uncover the causes of Crohn’s and Colitis, and develop better care and improve lives of people living with the conditions. This year, we’re offering new funding to continue the momentum. Our Open Call gives researchers the opportunity to apply for up to £100,000 in grants. We want to drive worldclass research and are inviting applications that have the real potential to enhance people’s lives or improve medical treatments.
FIND OUT MORE www.crohnsandcolitis.org.uk/research
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Crohn’s & Colitis UK AGM
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We look forward to welcoming you to participate in our AGM, which will take place on Saturday 18 September 2021. No plans have been confirmed yet due to changing lockdown restrictions, but we will be in touch by email to let you know details, as the next edition of Connect magazine will not arrive with you until after the date of the AGM. If you have any questions, please call our team on 01727 734465 or check the Crohn’s & Colitis UK website nearer the time. FIND OUT MORE www.crohnsandcolitis.org.uk
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Study to put patients in charge of care We are working with Sheffield Teaching Hospitals and the University of Sheffield to improve IBD services through an exciting new collaborative project that aims to put people with Crohn’s and Colitis in charge of their care. Everyone with Crohn’s and Colitis who receives their care
at Sheffield Teaching Hospitals will be invited to be part of the AWARE-IBD project, and the results will be used to inform care of Crohn’s and Colitis across the UK. AWARE-IBD is funded by The Health Foundation, a charity focused on improving health and healthcare in the UK.
Are You IN?
Advice lines are a vital resource
Investment in advice lines
The latest phase in our Not Every Disability is Visible campaign calls on companies throughout the UK to pledge their commitment to inclusivity for people living with Crohn’s, Colitis and other invisible health conditions. Are You IN? invites employers to sign up for a series of key pledges, centred around putting better support in place and training and empowering all staff to better understand invisible conditions such as Crohn’s and Colitis. Turn to page 18 to read more about the campaign and how you can get involved, including encouraging your own employer to sign up.
Training nurses so their support works for you Advice lines run by IBD teams have become ever more essential during the coronavirus pandemic, offering vital information and reassurance. In April, we ran our second advice line training session for IBD nurse specialists, to ensure that these advice lines are being run as effectively and efficiently as possible. Lisa Younge, project manager for IBD nursing, says: “It’s really important that we get this aspect of the service right. So much work supporting people to manage their Crohn’s and Colitis is about minimising unnecessary appointments and allowing people to get on with their lives. To do this effectively, it is essential that when people need their IBD team, they can get hold of them in a reliable way.” FIND YOUR LOCAL IBD NURSE SPECIALIST www.crohnsandcolitis.org.uk/ibdnurse
Stay up to date with our monthly email Connect Now Exclusive for our members. See advert on inside back cover for more information.
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RESEARCH UPDATES
Stay up to speed with new developments
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Looking for CLARITY on biologics and coronavirus Trial assesses antibody levels in people taking infliximab and vedolizumab
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Crohn’s & Colitis UK are supporting the CLARITY trial, which is looking at the impact of COVID-19 on people taking either infliximab or vedolizumab. Both biologic medicines block parts of the immune system, but vedolizumab works specifically on immune cells in the gut, whereas infliximab can affect the immune response throughout the whole body. Researchers are looking at blood samples collected since the start of 2020 from Crohn’s and Colitis patients. The researchers want to see if people on infliximab and vedolizumab produce antibodies to coronavirus and to coronavirus vaccines. Antibodies, along with other parts of the
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“It is strongly recommended that you have both vaccine doses”
immune system, help your body to fight infections. At the time this magazine went to press, results showed that people on infliximab and vedolizumab were just as likely to catch coronavirus as the general population. People taking vedolizumab were more likely to make a good level of antibodies after their first vaccination than people taking infliximab. But after two doses of the vaccine (or a single dose after previously being infected with coronavirus), most people on infliximab also made a good level of antibodies. Crohn’s & Colitis UK research programme lead Nikul Bakshi says: “More evidence is being gathered all the time and further
Could you be a Research Champion? Our volunteers help shape research for important studies We’re currently recruiting for people living with Crohn’s and Colitis to join our team of volunteer Research Champions. The best research happens when researchers put people first, and our Research Champions help us to make sure research reflects the needs and interests of people with Crohn’s and Colitis. The role involves attending meetings and sharing your own views and experiences in order
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Lizzie Smith
to represent the Crohn’s and Colitis community in our important research partnerships. You will be able to tell researchers what matters to people with Crohn’s and Colitis, and make sure that the research works for those living with the conditions. Lizzie Smith is our Research Champion in the Gut Reaction partnership. She says: “I am extremely passionate about
Head to our website for these new and updated guides
Anti-TNF medicines UPDATED Adalimumab, infliximab and golimumab are common treatments for Crohn’s and Colitis. Our updated resources include new information on how effective the medicines are. MAP and Crohn’s Disease NEW Some people believe that the bacteria MAP (mycobacterium avium subspecies paratuberculosis) could play a role in developing Crohn’s. We look into the evidence behind this in our new Research Spotlight feature.
The vaccination programme is rolling out fast
papers will be released as the researchers get more data. We will keep our members up to date on the CLARITY study via our website. “It is strongly recommended that you have both coronavirus vaccine doses when offered, regardless of which medicine you take or if you have had coronavirus before.”
CLARITY is studying data on 6,935 patients from 92 UK hospitals. It is led by the IBD research team at the Royal Devon and Exeter NHS Foundation Trust and the University of Exeter Medical School.
research and aware of the importance of clinical research and how this can impact positively on patient care. As a Research Champion I hope to increase public awareness of Crohn’s & Colitis UK and encourage more patients to get involved in research.” We meet regularly with our Research Champions to keep up to date on projects, and to share learning between projects and insight from our work. Crohn’s & Colitis UK health services & research programme officer Gemma Winsor explains:
“Our Research Champions help us make sure that the voices of people with Crohn’s and Colitis are heard in the UK’s most important research projects by volunteering their time to support this groundbreaking research. It’s a great opportunity to share learning and have a real effect on the latest research.” The deadline for applications is 31 May.
Fistulas UPDATED A fistula is a narrow tunnel or passageway that links one organ to another. Our newly updated information has tips to support you in managing this difficult complication.
FIND OUT MORE www.crohnsandcolitis.org.uk/clarity
FIND OUT MORE: www.crohnsandcolitis.org.uk/ information
FIND OUT MORE www.crohnsandcolitis.org.uk/researchchampions
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The newly released report, Crohn’s and Colitis Care in the UK, shows we’re still a long way from achieving high-quality, personalised care for all
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major report into the care provided to people living with Crohn’s and Colitis in the UK was released at the end of April. Published by the IBD UK partnership, in which Crohn’s & Colitis UK takes a leading role, the report is based on surveys of more than 10,000 people living with Crohn’s and Colitis, and self-assessments by over 70% of IBD services around the country, showing how well care meets the IBD Standards. The research took place before the pandemic, and in March 2020 local reports for each hospital were published (available to read at www.ibduk.org/reports). This new report looks at the bigger picture across the UK, “revealing a hidden burden of ill-health and unmet need, setting out a vision for change,” according to Sarah Sleet, CEO of Crohn’s & Colitis UK. “Crohn’s and Colitis are serious conditions which need serious action,” says Sarah. “We need to see better care for the estimated 500,000 adults and children living with Crohn’s and Colitis across the UK. Unacceptably high levels of emergency care and delays to diagnosis, investigations and surgery have been made worse by the pandemic. Doctors, nurses and other healthcare professionals are doing a great job, but we need the support of governments to transform care. That’s why we’re asking for a long-term strategy for IBD.” The report found that it is taking too long for
people with Crohn’s and Colitis to be diagnosed, meaning they suffer a delay in receiving the treatment and support they need, resulting in potentially avoidable flares and emergency care. Some 26% waited more than a year and 41% visited A&E at least once before they were diagnosed. This should not be the norm; we need to see faster diagnosis, and better information and support. The report does highlight hospitals that are trying new things to better support people with Crohn’s and Colitis. The diagnosis clinic at St Mark’s Hospital in London was set up to help newly diagnosed patients learn about their condition, equip them with the skills and confidence to manage it, and signpost them to other sources of information. This is an approach we would like to see as standard across the country. THE WHOLE PERSON Crohn’s and Colitis can affect the whole person, but the results of the report show that more attention must be given to symptoms such as pain, fatigue and anxiety. Right now, people are often managing these challenging symptoms on their own without the support of their hospital team. There is little access to muchneeded psychological and dietetic support.
Anisha’s story: finding care that works “Through the support and guidance of the IBD nurses, I’ve learned how to self-manage, where appropriate. For example, I know when my symptoms are getting worse because I’ve learned what to look out for and I can take responsibility for making some decisions because I have the appropriate knowledge.”
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NEW REPORT
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We’re calling for faster diagnosis, and for better information and support
22% waited more than 18 weeks for planned IBD surgery
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We’re calling for everyone with Crohn’s and Colitis to have faster access to specialist care and advice when they need it
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48% were not asked about fatigue
60% were not asked about emotional wellbeing
29% were not asked about pain
We’re calling for everyone with Crohn’s and Colitis to have a plan that addresses all aspects of their care and support to live well with their condition
People with Crohn’s or Colitis don’t have access to the full range of specialist care they need The care they receive is not well coordinated, or based on all their needs
14% of IBD services across the UK reported having enough IBD nurse specialists
13% reported having enough pharmacists to meet the IBD Standards
7% reported having enough dietitians to meet the IBD Standards
2% reported having enough psychologists to meet the IBD Standards
Only 48% of people felt their care was coordinated with other specialist services
We’re calling for fully resourced specialist teams with more IBD nurse specialists, so that where you live is not a barrier to getting what you need, and care is properly joined up
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IN OUR HOSPITALS: The report highlights the need for proactive, preventative care
There are also too many emergency hospitalisations, accounting for 72% of all IBD-related hospital stays. We know that fast specialist treatment can prevent these, so we need more routes to quicker help during flares. For example, Edinburgh’s Western General Hospital has a clinic that helps people with Crohn’s or Colitis to see an on-call consultant gastroenterologist on the day so they can start the right treatment immediately.
printed by the GP and a copy left at reception so I can scan them and send them to my IBD nurses for my hospital records. There have also been instances where GPs have missed important red flags on my blood tests because there isn’t an effective system in place.” In short, the report underlines the need for faster diagnosis, personalised care, rapid access to expert advice and treatment, and fully resourced teams with more IBD nurse specialists.
SPECIALIST PROFESSIONALS IBD services also need to be better resourced and staffed, so that where you live is not a barrier to getting what you need. The self-assessments taken by the hospitals show that few of them have enough IBD nurse specialists, pharmacists and dietitians to meet the IBD Standards. The story of Anisha Gangotra, who lives with Colitis, is an example of where care works and where it doesn’t. “I spent five months travelling in South America and my IBD nurse was my first port of call to discuss how to manage my Colitis safely and effectively. This gave me peace of mind, reassurance and necessary specialist advice to enable me to do something I’d always wanted to do,” she says. However, like so many people, Anisha remains frustrated by a lack of joined-up care, where it feels like healthcare teams don’t speak to each other. “My GP and consultants are unable to see my patient records held by the other. I have to ask for blood test results to be
READ THE REPORT ONLINE ccuk.link/newreport
Help us get Crohn’s and Colitis recognised as an NHS priority. Email your political representative to ask them to support our campaign for better IBD care. Visit www.ccuk.link/bettercare or scan the QR code
“As we come out of the pandemic, we want to create a society for people with Crohn’s and Colitis to thrive, not just survive” Sarah Sleet CONNECT | SPRING 2021 • 11
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ucy Taffs and her daughter, Sophia, make a great team. The little girl has seen her mum go through a lot: Lucy experienced several years of near-continuous flare-ups in the years around her daughter’s birth. Then, when Sophia was just 17 months old, Lucy went into hospital for a proctectomy; two years later, she was back for a total colectomy. Since having her ileostomy, Lucy hasn’t looked back. She’s in good health and, alongside her young sidekick, lives an active life. So, when she heard about the opportunity to raise money for Crohn’s & Colitis UK through a sponsored walk in her area, Lucy seized the chance. Taking part in My WALK IT 2020 enabled Lucy to help raise awareness of Crohn’s and Colitis among her social network, drum up money to help other people living with the
conditions, and keep six-year-old Sophia entertained during a year in which children’s activities were few and far between. Over two days at the end of June last year, Lucy and Sophia managed to notch up over 13 kilometres. “We walked around a local reservoir, which was about 8 kilometres, and then took a long walk from our village through the countryside,” recalls Lucy. “It was nice to get out in the fresh air, and good to know you were raising money at the same time.” Lucy was delighted to raise an amazing £935 for Crohn’s & Colitis UK through the walk. “I put my story on JustGiving and shared it on my Facebook page. A lot of the mums at my school had no idea about my ileostomy and I think they were quite surprised. Maybe that made them donate a bit more!”
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For many years, WALK IT has been Crohn’s & Colitis UK’s flagship event, a chance for supporters and their friends and families to have fun while fundraising, and for the Crohn’s and Colitis community to come together in several different cities across the UK. So it was with great sadness that we realised last year that the usual organised events – in cities from Edinburgh and Newcastle to Plymouth and Swansea – would have to be cancelled. Under the circumstances, there was no other choice to make. In its place, we launched My WALK IT, a new virtual challenge in which participants complete their walk in their local area – in a park, nearby streets, the garden or even the living room – and have the flexibility to make the event their own. Last year, you could choose to walk either 5k or 10k. For this year’s event, taking place in June,
“This was something I could do to make a difference”
RAE AND EMILY: Walked together to support Crohn’s & Colitis UK
we have expanded the options to include a full or half-marathon.
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BEST FRIENDS Rae Imlach (21) lives in Buckie on the Moray Firth coast in the Scottish Highlands where she works as a hairdresser. Rae was diagnosed with Crohn’s 10 years ago; her condition is currently managed with infliximab. In 2019 Rae had hoped to travel down to Edinburgh to take part in WALK IT in the company of her best friend, Emily, but circumstances meant they couldn’t. Instead, last year they took part in My WALK IT, pledging to complete 10k (one kilometre for each year since Rae had been diagnosed with Crohn’s – plus one for luck!). In the event, they managed much more, walking the Moray coast from Buckie to the nearby village of Cullen and back again, a total of around 22 kilometres. “Crohn’s & Colitis UK have been amazing and helped me through a lot,” says Rae. “Raising money and awareness is so important and hopefully one day there will be a cure.” Rae hopes to take part in My WALK IT again this year. If she does, no doubt Emily will be striding along by her side. “She’s been there through my whole journey,” says Rae. “It’s been good to have her.” MARK’S MANY MILES Like Lucy and Rae, 20-year-old Mark Rodger had never taken part in WALK IT before, but he has found the support of Crohn’s & Colitis UK immensely valuable, ever since he was diagnosed with Crohn’s in 2012. Mark was working as a Tesco manager but started shielding when the pandemic hit, and had to stay away from work. By last summer he was feeling lonely and realised his mental health was suffering. Then he read about My WALK IT in an email from Crohn’s & Colitis UK and decided to sign up. As someone who walks regularly – often in the company of his dog, Oscar – Mark knew that completing 10k would be something he could do quite comfortably, and so he decided to add his own twist to the fundraiser. “I planned to walk 10k every day for 10 days. Then, I was talking to my mum and dad, and said, if I reach
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MARK: Reached the top of beautiful Ben Lomond on his most challenging walk
Sign up for My WALK IT 2021 My WALK IT will be taking place this June, with new half and marathon distances to choose from. Sign up for FREE and receive an exclusive T-shirt. Raise £150 and we’ll send you a medal just like the one won worn by Lucy Taffs on page 13. To find out more visit
www.mywalkit.org.uk
£500 in sponsorship, I’ll do it for another 10 days. I ended up walking 10k a day for 20 days.” Mark started local to his home in Dunfermline but eventually, as travel restrictions lifted, he chose increasingly ambitious routes. On one walk, he crossed the Forth Road Bridge between Edinburgh and Fife. On another, he summitted Ben Lomond, one of Scotland’s Munros (mountains over 3,000ft). “There’s nothing better than getting to the top and thinking, wow, I’ve just walked up that!” he says. For some walks he was joined by a friend, Luke, on others by Oscar the dog. Over the course of his 20-day challenge, Mark raised a brilliant £730. “There were some days when the sun was shining, I was out in my shorts and it was great! There were some days when the rain was pelting down and it was a wet affair, shall we say? But nevertheless I felt I had a reason to do it and I enjoyed doing it. “The charity’s done a lot for me, and this was something I could do to help. It meant a lot to me that I could raise that money. Every donation makes a difference.” READ MORE MY WALK IT STORIES www.crohnsandcolitis.org.uk/whyiwalkit CONNECT | SPRING 2021 • 15
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The pandemic has caused added stress and uncertainty for many people living with Crohn’s and Colitis. But the Crohn’s & Colitis UK Helpline means there’s always someone to turn to for information and support
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hen COVID-19 hit, our helpline saw a huge spike in enquiries. In normal times, it deals with a wide range of queries covering everything from diagnosis, treatment and coping with difficult symptoms, to managing relationships and accessing financial support. But March last year brought a barrage of new, pandemicrelated questions, along with a 121% increase in phone calls and over seven times more emails compared with the previous year. “Many people were worried that their condition, or medications that impact the immune system, put them at extra risk of complications if they were to catch coronavirus,” says helpline officer Sarah Kate. “It was all new for us too and we certainly couldn’t have operated without the support 16 • SPRING 2021 | CONNECT
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of our Knowledge and Evidence team. They worked round the clock to ensure we were briefed on all the latest updates so we were prepared to answer any queries, and that all the information we were giving out was clear, accurate, impartial, evidence-based and up to date.” Although the number of enquiries has levelled off now, the team are still working hard to keep abreast of new information, Sarah Kate adds. Every time a coronavirusrelated development is discussed in the media it brings further questions about how it might impact the Crohn’s and Colitis community. And now many people have queries about whether it’s safe for them to have the vaccine too.
Just listening and providing support is another important function of the helpline and it’s been much needed during the pandemic. “Many people have been shielding and we’ve noticed that more are struggling with their mental health and wellbeing. We’ve had lots of calls from people who’ve been having a very difficult time,” says Sarah Kate. Like most office workers, the helpline staff have had
“COVID-19 brought a 121% increase in calls to our helpline last year”
Support from the helpline The Crohn’s & Colitis UK Helpline is available to anyone who needs it from 9am to 5pm, Monday to Friday. Call 0300 222 5700 or email helpline@ crohnsandcolitis.org.uk. You can also access it via LiveChat on our website or through social media channels, such as Facebook and Instagram.
to switch to home working. “We were going to have a one-day test with the whole office working at home to see if the IT systems could cope so we all went off with our laptops. But that night the government announced that we should all work from home if we could, so we never went back to the office.” Being physically isolated from the rest of the team has been hard, she says, and they have missed just being able to tap a colleague on the shoulder when they need assistance or support. However, they keep in close touch with regular online team meetings. “We’re all facing our own challenges living through the pandemic and have had to
get used to a new way of working, but we’re a strong team so we’re very mindful to work together and support each other.” The role is hugely rewarding, Sarah Kate says. “No two days are ever the same, you never know what you’re going to be asked when you pick up the phone. A caller may be quite distressed and if you’ve been able to provide them with the kind of information and support they’re looking for, it helps them to feel empowered and more confident in managing their condition. “I get a lot of satisfaction out of that and knowing I’ve hopefully made a positive impact on somebody’s day.”
We can provide general information about a range of subjects, including: • Medication • Symptoms • Tests and diagnosis • Diet • Employment issues • Personal Independence Payment (PIP) • Disability Living Allowance (DLA) for children • Help to find support from others living with the same condition Please note that our helpline provides information and support but cannot provide individual medical advice
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THE NEW WORLD OF WORK With lockdown bringing changes to many people’s employment, our new campaign couldn’t have come at a more important time
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WORDS CAROLINE ROBERTS
re You IN? is the work-focused phase of our Not Every Disability is Visible campaign. Launched in May, it calls on companies to pledge their commitment to inclusivity, and take positive steps to provide a supportive environment for employees with invisible disabilities and health conditions. Our campaign comes at an opportune time. For some, changes to the way we work have been a lifeline, with more flexibility and support to manage their long-term condition. However, the pandemic has worsened employment-related issues faced by many people with chronic illnesses. It's been particularly difficult for key workers and others in public-facing roles, for whom working at home isn’t an option. Guidance has not always been clear, and not all employers have been sympathetic to those needing to shield and others with vulnerabilities. Research carried out last year by employee healthcare provider Reframe found that almost half of employees surveyed would feel uncomfortable about disclosing a health issue to their employer during the pandemic, and one in 10 were concerned they might lose their job should they talk openly about it. But we know that looking after employee wellbeing can bring massive benefits for employers. CONNECT | SPRING 2021 • 19
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More time to spend together: Andy Kumar and his dog, Scruffles
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“Having the flexibility to work from home has significantly improved my health over the past year” Flexible working The good news is that the pandemic has encouraged a re-evaluation of long-standing working practices. Lockdown has shown that office-based employees can work from home successfully, opening up the possibility of a better work-life balance, and employee surveys have shown that many people would favour a mix of home and office working in the future. Last summer, our Life in Lockdown survey found that over 50% of people living with Crohn’s or Colitis were benefiting from more time to rest and manage their condition, and almost half felt positive that the pandemic could help change working life for the better. As we start to emerge from the pandemic, many organisations are thinking of adopting a ‘blended’ model in which employees 20 • SPRING 2021 | CONNECT
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will have more choice about how and where they do their jobs. Being able to spend at least part of the time working from home has obvious advantages for Andy Kumar, an intelligence analyst with the Metropolitan Police. His employer has always been supportive in offering flexible and home working, as well as time off for hospital appointments. Then, at the start of the pandemic, Andy moved to full-time home-working because of his need to shield. Although his condition is well managed, he still has minor flares. “This can make commuting a little tricky and working from home does help alleviate some of the pressures of standing on a cramped train with abdominal pain and discomfort,” says Andy. “Fatigue is also a marked feature of my disease and having the flexibility to work from
Working in the Commons Last year, we spoke to MP Daisy Cooper about living with Crohn’s and her professional journey to become a politician Daisy told us about the adjustments that had been made for her, showing that even long-standing parliamentary traditions can be open to change. Before the pandemic, the Speaker would have a list of MPs who were going to speak in a debate but there wouldn’t be a published running order. MPs would have to keep ‘bobbing’, or standing up, to
catch the Speaker’s eye, making it very difficult for someone to plan when they’re going to eat or use the toilet. Since lockdown, a published list has made it easier for Daisy to participate. “I’ve submitted evidence to the procedure committee to keep some of those measures,” she told us. “A lot of people in parliament like tradition, but the point I’ve
been trying to stress is that this isn’t about tradition versus modernism, it’s about making this a workplace that is accessible to everybody.” FULL INTERVIEW: www.crohnsand colitis.org.uk/connect-now
NICOLA ROSS
home helps conserve energy. There’s also ready access to the toilet. Working from home has improved my diet too, with the availability of fresh, home-cooked foods that suit me. In short, having that flexibility has significantly improved my health over the past year.”
Shielding: Bethan Emerson has worked from home during the pandemic
Mental health awareness The pandemic has also brought about a renewed focus on employee wellbeing in some sectors. Working in isolation while juggling other pressures, such as home schooling, has been hard for many, and this was apparent from our Life in Lockdown survey, which showed 56% of people felt their current working environment was having a negative impact on their mental health. There’s been a lot of discussion in the media about the psychological effects of these changes in lifestyle, and it’s something some employers are taking on board. Bethan Emerson, who has Crohn’s and works in human resources at the NHS Health and Social Care Trust in Belfast, knows what a difference an understanding and supportive employer can make. “Having to shield since March 2020 has been really difficult at times, and at the beginning I was really anxious about being clinically vulnerable to coronavirus,” she CONNECT | SPRING 2021 • 21
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explains. “However, my manager has made working from home really easy, and she’s helped me to manage my increased anxiety. “She always encourages me to take regular breaks and emphasises the importance of properly switching off after work. Although they’re dealing with a global pandemic too, I’ve never felt that my manager was too busy to check in on me. It’s so reassuring in what has been a really stressful time for all.” Supporting employees with chronic conditions has huge benefits for the organisations they work in too. Max Horton was very nervous about mentioning his Crohn’s during the hiring process for his role in regulatory affairs at medical devices company Smith+Nephew. But, he says, “I had nothing to worry about. My manager was so sympathetic and understanding, and assured me they would help however they could.” “Max’s Crohn’s experience has given him a number of critical skills that are impossible to teach: strength, resilience, optimism, perspective and calmness in stressful situations,” says his
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manager, Sam Greenhalgh. “By understanding, accepting and working together with Max, we have minimised the difficulties caused by his Crohn’s and unlocked the massive potential that comes with it. And he brings a great sense of enthusiasm and perspective to our team, having used our products as part of his own recovery.” Andy Kumar’s manager at the Metropolitan Police, director of intelligence Lindsey Chiswick, agrees that by supporting staff you make the most of their talents. “Keeping London safe is a challenge that requires the best efforts of everyone working together. I want to provide a well-supported and flexible workplace to enable our staff to do the best job they possibly can. Making adjustments for Andy has proved to me the value of listening and adapting to individual needs. He’s a real asset to the Met, and we’re lucky to have him!”
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Teamwork makes the dream work Glen Neilson’s story also shows how much a culture of openness and acceptance around
“My manager was so sympathetic and understanding, and assured me they would help however they could”
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Are You IN? Get your company involved today We want employers across the UK to make a commitment to inclusivity, by signing up to pledges that support people living with invisible disabilities and conditions in the workplace. Pledges include: • • • •
Appoint an invisible condition representative Put Not Every Disability is Visible signs up in toilets Consider flexible and remote working Complete training on Crohn’s and Colitis and invisible conditions in general • Use our new conversation guides to empower Managers, HR and people with invisible conditions to discuss workplace support It’s quick and easy to get your employer and top UK companies involved. We’ve created a template email for you. Scan the QR code to get involved today.
www.noteverydisabilityisvisible.org.uk/areyouin invisible health conditions can benefit team Glen’s confidence to talk about his condition cohesion. When the pandemic hit, Glen, is amazing, but not everyone feels comfortable who lives with Colitis and has an ileostomy, talking about their health and companies could was forced to shut down his events business. be doing much more to support people in the This prompted him to act on a long-held workplace. That’s where Are You IN? comes ambition to become a firefighter. “The in. Our pledges will help put more fire service didn’t know I was an support systems and policies in place ostomate until I got right through for people with invisible to the final day of recruitment, disabilities and conditions, and which was the medical,” he says. promote better awareness and “They asked why I hadn’t understanding of Crohn’s and mentioned it and I said I didn’t Colitis and invisible conditions need to as it’s not a problem for in general. A fresh start: Glen me so I don’t see why it should be a As soon as an organisation Neilson joined the fire problem for anybody else. When I pledges support to Are You IN? they service last year told the other firefighters I had an will gain access to our free training ileostomy and asked if I could keep some ostomy materials, as well as an invisible disability bags on the truck, they didn’t raise an eyebrow. badge of excellence. So, if you know a company “People at work have asked lots of questions that’s looking to lead from the front as an about my condition but they couldn’t be more inclusive employer, call on them to get involved. accommodating. Although once someone did We’ll point them in the right direction. ask me if I was okay climbing ladders with my ostomy. I just said that I’d climbed mountains GET INVOLVED with it so it shouldn’t be a problem!” www.noteverydisabilityisvisible.org.uk/areyouin CONNECT | SPRING 2021 • 23
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YOUR STORIES
Our members give their view from the front line
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Cute crafts for Crohn’s
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How did you get started with crafting? When I became ill with Crohn’s, I had to stop work as education manager at an outdoor museum on the North Yorkshire Moors, as it was quite a physical job. I’ve always enjoyed crafting so, rather than just mope around the house, I taught myself to crochet.
When did you start selling your craft items? There are only so many gifts you can give family and friends, and my husband persuaded me that other people might like my crafts so I set up a little shop on the online marketplace, Etsy. I didn’t want the pressure of doing it as a business, so I decided to raise money for charity and Crohn’s & Colitis UK was the obvious choice.
Emma Colclough raises funds for Crohn’s & Colitis UK by selling her handmade products
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How much have you raised? I’ve been selling for just over two years and so far I’ve donated £1,881. It’s also about raising awareness. I set up an Instagram account where I mainly post about crafting, but I’ll often comment on how I’m getting on with my Crohn’s too. I used to think, why would people want to listen to what I have to say about Crohn’s? But then I thought, no, I’m going to share this and get it out there in the open. The Happy Bowels is the first crochet pattern I wrote myself and it has kind of become my mascot. I want people to have happy bowels even when the real thing is anything but happy. Does crafting help you deal with your condition? It’s definitely good for my wellbeing. It helps me feel productive, even in times when I don’t feel as productive in my life in general. I get quite anxious about medical things, like when I’m going in for a procedure or starting a new
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“The Happy Bowels crochet pattern has kind of become my mascot”
Your Stories, 1
A helping hand Long-standing member Krystyna Kraus explains why she decided to leave a gift to Crohn’s & Colitis UK in her Will
Crafty Hearts, Happy Bowels
medication, so I’ll often craft in the run-up to that and I find it soothing. I’ve had a couple of minor reactions to medicines in the past so whenever I start something new I’m always paranoid that it’s going to happen again. If I sit and crochet, I’m focusing on that and not on thinking, is my throat swelling up, am I getting a rash, is my heart rate increasing? How is your health at the moment? I’ve never officially hit remission but, compared to how it’s been in the past, my Crohn’s is fairly well controlled. I now work part-time from home doing admin for my husband’s company, so that enables me to manage my condition and gives me more time for crafting.
close to Selby. I’ve been “I was diagnosed with Crohn’s shielding during the when I was 18 in 1973. I had pandemic, but last summer I multiple hospital admissions got to spend almost every day resulting in a permanent in the garden. I sell plants at ileostomy in 1976, just a the gate and this year all the year after I got married. proceeds are going to Crohn’s “I found little information & Colitis UK. on the illness during my “I’m in my 60s now. I feel hospital stays, but met lots extremely privileged to have of other patients who had been there at the beginning questions about living with and to see how far the charity Crohn’s so, with the help of has developed, grown and family and friends, I started how much it has achieved. the Leeds & District branch “My husband Zyggy has of what was then the National supported me throughout my Association for Colitis & journey and we have made Crohn’s Disease in 1983. mirror Wills. It just seemed “Crohn’s has affected every the right thing to do to include aspect of my life. I was too ill Crohn’s & Colitis UK. It’s to have children and I feel my been a big part of my life career would have taken a and it’s a good place for our different path had I not been money to go, to help other so ill. If only the treatments people in the future.” that are available now were around in the 1970s! Within FIND OUT ABOUT LEAVING A GIFT two months of starting on Call Sophie on 01727 734 485 or email infliximab, I felt like a different remember@crohnsandcolitis.org.uk person. I was later moved onto adalimumab and have been on that for years. Although the scarring from my surgery causes me issues, my Crohn’s is now pretty much under control. “I decided to take early retirement on health grounds and we moved SUPPORT from Leeds Krystyna and her husband, to a village Zyggy
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GET INVOLVED
There are so many different ways for members to participate in our work and support their charity
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Get online with our networks Virtually meet people who may be going through similar circumstances
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Since lockdown and the pandemic prevented opportunities for in-person socials, we have launched a virtual alternative. Our online social events offer the chance to chat, share experiences on how to live well with Crohn’s or Colitis, and learn more about our charity and its Local Networks. We surveyed those who took part in the pilot virtual events last year, and for 51% of them this was their first time attending a Local Network event. An impressive 96% said they
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would recommend our virtual events to other people. Although there are country specific events for Scotland, Wales and Northern Ireland, and regional events for England, anyone from across the UK who is affected by Crohn’s and Colitis can attend any of these virtual social events.
“91% of attendees felt less isolated after attending”
Each event may have a specific topic but the discussion, led by a local volunteer, will be driven by what those attending wish to talk about. Anybody aged 18 or over can sign up for the virtual social events by following the link below. All you need to join in is a computer, tablet or phone with access to a microphone and camera, so you can be seen and heard during the sessions.
SIGN UP FOR AN EVENT www.crohnsandcolitis.org.uk/ virtual-social-events
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ore sugges great www.c tions at r colitis.oohnsand r fundra g.uk/ ising
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Fundraise from home Have fun and raise money and awareness at the same time
In-person events are still tricky at the moment, but there are lots of ways you can support our charity and have fun with family, friends and colleagues at home. How about holding a virtual bake-off, book club or talent contest in return for a contribution from participants? Or perhaps you have a skill to share through an online workshop or talk? If fitness is your thing, you could do a sponsored ‘climb’ of Big Ben, or even Ben Nevis, using your staircase.
Unable to take part in her usual running events while she was shielding, Sara Cookson, who lives with Crohn’s, came up with a different idea off the top of her head – literally. “During lockdown I’ve been feeling particularly useless so I shaved my head for
the charity! I wanted to be able to give something and make a small difference. I put an initial total of £500 to aim for but to my surprise and amazement it has just topped £1,300. I am so grateful for the support and kind words I have had and, hey, it’ll grow!”
“I initially aimed for £500 but topped £1,300!” CONNECT | SPRING 2021 • 27
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Help develop research Play a key role in helping to make our vision a reality
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There are many different ways to get involved in research that will help us work towards our vision of a world free from Crohn’s and Colitis. Studies range from online questionnaires, for example looking at how diet may improve people’s daily lives, to clinical trials of new drugs. Involvement in research takes many forms, and we also have opportunities to shape new studies. This could mean working with research funders to help prioritise the needs of people with Crohn’s and Colitis, or joining steering groups or focus groups.
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“Studies range from online questionnaires to clinical trials”
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To find out about all new research opportunities, join the Research Community by filling out a simple form on our website. It’s also worth making a note in your diary that our Patient Involvement in Research Day will take place on 6 November. Like last year, this event will be virtual, with six exciting research projects presented and discussed live online. You will also have have the opportunity to engage directly with researchers, respond to their polls and ask questions. FIND OUT MORE www.crohnsandcolitis.org.uk/research
STA UPDATY ED Join ou rR
Comm esearch www.c unity at ro colitis.o hnsand rg resear .uk/ ch
“Our template makes it easy to get involved”
4
Write to your councillor Ask that Not Every Disability is Visible signs are put up in your area
The important work of our Not Every Disability is Visible campaign continues. More than 53,000 emails have been sent to CEOs of restaurants and pub chains, asking them to install new accessible toilet signage and help raise awareness that Not Every Disability is Visible.
Recently, we’ve been delighted by the success of our e-action, in which our people from the Crohn’s and Colitis community have emailed their local councillors to ask them to install our toilet signs on accessible toilets in all public buildings. So far, councils that have pledged their support via new toilet signs and staff training include Oldham, Swale and Renfrewshire. Our 2019 survey showed that 83% of people with Crohn’s or Colitis felt more comfortable visiting a venue when our Not Every Disability is Visible toilet signs were installed. If you would like to write to your councillor, it’s very easy to
do so. Visit our website to create an email using the template. SEND YOUR EMAIL www.noteverydisabilityisvisible. org.uk/councillors
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Making contact
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I can’t get hold of my medical team. What should I do?
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April Trawicki says: On the helpline we often speak to people in this situation, and we suggest a few ways you can try to make contact. • Many hospital services have advice lines, usually supported by IBD nurse specialists. On our website we have an interactive map and contact details for some of the UK IBD nurses, but not all hospitals will operate this service. • Another option is to contact the secretary of your consultant. The main hospital switchboard should be able to put you through. • You could also speak to your GP, who might be able to contact the hospital on your behalf.
Many hospital services have advice lines
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• If you leave a voicemail message or send an email it’s helpful to include your full name, date of birth, NHS number if you know it, and give a brief idea of your question or concern. • If you’re struggling to access your medical team you could contact the Patient Advice and Liaison Service (PALS) at your hospital if you are in England; the equivalents are Patient Advice and Support Services in Scotland, the Patient and Client Council in Northern Ireland and Community Health Councils in Wales. If you feel your symptoms are becoming an urgent medical concern, then you could call outof-hours services such as NHS 111 or, in an emergency, 999. Our helpline can give you the right information and support to help you to live better with your condition, but
Our panel of experts answer your questions
we can’t provide individual medical advice. We want everyone to have easy access to their IBD team, and we’re calling for all teams to have enough IBD nurse specialists.
Infliximab at home
Q
I’ve heard there is a new way to receive infliximab at home, instead of having to go to hospital. Is this as effective and safe? If I want to consider switching, how do I go about it? Dr Philip Smith says: You are correct that there is a new way of having infliximab as a subcutaneous injection (injection into the skin) rather than intravenously (via the vein). This is currently only available for the Remsima brand of infliximab. The really good news is that the initial randomised trial of this new treatment in patients with active Crohn’s and Colitis has shown it is just as safe and efficacious as having it intravenously. In fact, the amount of drug that remains in your body over time is higher and more stable in patients who receive subcutaneous infliximab, as you do not get the sudden very high or low levels you do when having it via the vein. Consistent drug exposure could mean that infliximab may continue to work for longer in patients receiving the medicine subcutaneously. Subcutaneous Remsima has only recently been approved in the UK for use in Crohn’s and Colitis patients, so many trusts are applying to clinical commissioning
Just Ask, 1 Dr Kevin Barrett, GP
April Trawicki, Support Services Manager, Crohn’s & Colitis UK
groups to switch patients from intravenous to subcutaneous drugs. You would need to ask your IBD team if it is available to you. If patients are able to use this treatment, they can inject themselves at home every two weeks. Early experience at the Royal Liverpool Hospital has reproduced the positive findings of the randomised trial in real world patients, showing switching to subcutaneous infliximab is safe and effective. We hope this data will be published very soon.
New diagnosis
Q
I’ve recently been diagnosed. While I await treatment, what can I do to help myself stay well?
Dr Kevin Barrett says: Being diagnosed with a life-long chronic illness is a significant life event and often a time of mixed emotions. It is important to take care of your mental health and seek help from your GP or from your local psychological support service. Many treatments for Crohn’s and Colitis require further tests before they can be started so it is important to attend appointments or have blood tests when requested. It is also important to make sure that you are appropriately vaccinated, particularly against COVID-19 – if possible, you should have both doses of the vaccine before starting immunosuppressive medicines for the first time. Now is also a good time to
Dr Philip Smith, Consultant Gastroenterologist and IBD Specialist, Royal Liverpool Hospital
Jaina Engineer, Knowledge & Evidence Manager, Crohn’s & Colitis UK
It’s still unclear how long vaccine protection lasts
discuss your diagnosis with friends and family – Crohn’s & Colitis UK has some great resources to help (www. crohnsandcolitis.org.uk/newlydiagnosed), and the In My Shoes app is useful too.
COVID-19 jab
Family support
Q
The charity CICRA (www.cicra.org) also has information and support for young people with Crohn’s and Colitis and their families.
I’ve had my COVID-19 vaccination. Can I go back to normal/stop social distancing?
Q
My child has just been diagnosed – what support is out there for us?
April Trawicki says: It’s natural to feel worried about what your child’s diagnosis could mean for them and your family. But you’re not alone. There’s lots you can do to help your child live life to the fullest – and Crohn’s & Colitis UK is here to help, every step of the way. We have information on how to support your child with their condition, as well as resources for young people themselves – from a children’s storybook, to videos on coping with school and transitioning to adult care.
Jaina Engineer says: Right now, it’s recommended that you continue to follow government guidance on keeping yourself safe from coronavirus, even if you have had the vaccine. This is because we don’t yet know how long the vaccine will protect you, and how well it stops you from passing on the virus to others. If you take a medicine that affects your immune system, there’s also a chance that the vaccine might work slightly less well for you. Read about the CLARITY trial, which is looking into the effects of some Crohn’s and Colitis medicines on vaccine response, on p6 of this magazine. CONNECT | SPRING 2021 • 31
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‘When people say I can’t do things it makes me more determined’
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JJ Smith, 11, winner of our Alex Demain Young Fundraiser of the Year Lifetime Awareness Award, tells us about his mission to inspire others
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I was seven when I was diagnosed with Crohn’s. It was scary. I went through loads of websites trying to find out more about it. Then I found Crohn’s & Colitis UK and that really helped me. I gave a talk to 300 pupils and staff at a local school. I was nervous but people asked loads of questions and I got good feedback. One Visit ou r of the teachers said www.c website at I was a natural colitis.o rohnsand involve rg.uk/getspeaker and I got d how yo to find out booked for two make a u too can more schools. I also differe nce have a vlog where I talk about what Crohn’s is and how it affects me. The last year has been I used to do lots hard as I’ve missed of fundraising for seeing my friends. Crohn’s & Colitis UK Karate has been a lot harder before lockdown, like when too as I’ve had my training my karate club and my brother sessions on Zoom. I’m training Shayne’s kickboxing club got with the WKU England team together for a sponsored and it’s very exciting. The sparathon. That raised over world championships in £1,000. I’ve done WALK IT, Canada have been pushed had a sweet sale at school and back a year and I’m really a stall at a fete. I was planning hoping to go as I’ve never a football coaching day but we’ve not been able to do that yet. I’m about to start a readathon with Shayne. We’ll see how many books we can read in a month. I reckon I’ll read about six, and he’ll do about 11 as he’s nine and his books are a lot shorter than mine.
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JJ and Shayne raised £1,000 in a sparathon
been abroad before. I’m going to try my best to get selected.
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When people say I can’t do things it makes me more determined. Someone said I wouldn’t be able to be a goalkeeper because if I was hit in the stomach I’d go straight down. But then I became the star goalkeeper. I want to inspire people. I’ll go into schools and talk about what it’s like to have Crohn’s and how you can do anything you want if you put your mind to it. I’d like to go everywhere with my karate career and be world champion. READ JJ’S BLOG FOR YOUNG PEOPLE www.crohnsandcolitis.org.uk/jj-tips
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Connect more!
Enjoy reading Connect magazine?
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ir ze tP
1s
0 0 5
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, 2 £
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SPRING RAFFLE
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By entering our Spring Raffle, you will be in with the chance of winning £2,500 whilst supporting people with Crohn’s and Colitis
PLAY TO SUPPORT EARLY DIAGNOSIS Your donation will help us speed up diagnosis for people experiencing Crohn’s and Colitis symptoms, and find improved treatment options
Enter now at
www.crohnsandcolitis.org.uk/springraffle or alternatively you can call our raffle hotline on 0370 058 5956
We are Licensed by the Gambling Commission www.gamblingcommission.gov.uk. Promotor: Sarah Sleet, Crohn’s & Colitis UK, 1 Bishops Square, Hatfield, AL10 9NE. For information and/or help with problem gambling, please call GamCare on 0808 8020 133 or visit www.gamcare.org.uk.
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