SEPTEMBER 2019

Berkshire Local Network

Crohn’s and Colitis UK Berkshire Local Network Newsletter Page 2

WALKIT LONDON 2019 IN THIS ISSUE

Made in Chelsea star Louise Thompson opened the London WALKIT London 1

WALK IT Windsor Fair 1

Each year Crohn’s & Colitis UK Woodcote Rally 1 hold an event called WALK IT, and WINDSOR & ETON Volunteers Week 2 this year was no different. On the 8th June 2019 Made in Chelsea star SUMMER FAIR Dates for your diary 4 Louise Thompson opened both The Windsor & Eton summer fair event where participants could was on Saturday 29th June, and the either walk 5km or 10km to help primary purpose of this event is WOODCOTE STEAM raise awareness and raise funds to provide a platform for local for the charity. Charities to raise money for their RALLY

causes and at the same time Louise Thompson was diagnosed provide a great day out for all the The Woodcote Rally is South with Ulcerative Colitis in 2018 and family. Oxfordshire's premier event of its in an interview with Crohn’s & kind, with steam, vintage & Colitis UK had this to say: If you were at the fair then you veteran transport displays and “I'm thrilled to be supporting would have noticed that we were entertainment for all the family. Crohn’s & Colitis UK and very also there to, showing off our The rally has been running for 56 excited to be opening WALK IT! brand-new gazebo tent. The years now and this year on the 13th It’s going to be a great day and weather was scorching hot and our July 2019 was very special as the I’m looking forward to meeting new gazebo tent provided us with Berkshire network was able to set lots of amazing people who have some much needed shade and our up our awareness stand. Crohn’s or Colitis. This is going to volunteers had such a great time, be a big year and I’m really happy and raised over £90 with the help Just like the Windsor fair, the to support a charity that does of the instantly popular game of weather did not disappoint and some amazing work supporting ‘knock the poop off the stick’. incredibly through generous those with the conditions as well donations and participation in the as funding research to try and ‘knock the poop off the stick’ find a cure.” game we raised over £120. Our volunteers had an amazing People from all over come time and met some incredible together as part of the Crohn’s & people who were glad to see that Colitis community to paint the we were trying to make the streets of London purple to invisible, visible. spread awareness, raise vital funds & show their support for those living with Crohn’s & Colitis.

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VOLUNTEERS WEEK It was volunteer’s week between 1st and 7th June, so allow us to share why our volunteers decided to volunteer

I volunteer because having gone support/learn from others with through so much and coming out Crohn’s & Colitis - sharing my the other side, it felt like an story as well as hearing from obligation to help others doing others gives me the confidence to the same. Also, to raise keep fighting. Developing on my awareness and help educate those social media skills and working in the health care profession to together with an incredible team better diagnose and manage of volunteers to organize events Crohn’s & Colitis. Lastly, to make and help raise awareness in the some wonderful friends and have community. A highlight so far some fun in the process. would be our very first coffee morning where we spent almost "Be the change you wish to see in Three things I love about three hours talking to someone the world" - Mahatma Gandhi volunteering is having the newly diagnosed and then seeing opportunity to work alongside them again almost a year later and Before I got diagnosed, I had passionate individuals also hearing from them how much never heard of Crohn’s & Colitis, wanting to give back to the cause. talking to us had helped. That's let alone know how debilitating it Being able to talk to and meet what this is all about for me. is. I wanted that to change, I others with Crohn’s & Colitis. wanted there to be a cure and I Learn of their stories and Sharan. couldn't sit back and wait for triumphs Gain experience of someone else to make it happen - volunteering to help myself also so I got up and volunteered to grow as a person change the world. A highlight from your experience I love raising awareness, when so far would definitely be helping people say to me wow I never to run the info stand on world IBD knew that, I really feel like I've day this year in the Reading Broad made a positive impact. I'm Street Mall. It was my first time developing skills that will help me doing something like this. Was a in my career, as a lead volunteer chance to raise awareness, speak this is mainly leadership and to people and have some fun at communication skills. I've met the same time. some incredible people through I decided to volunteer because I volunteering and I have such a Kevin. strong support crew of Crohn’s & spent a long time being Colitis sufferers. embarrassed about my Crohn’s Disease. In volunteering it has helped me grow more comfortable My highlight so far has to be the in talking about my Crohn’s with wellness day we did last year, we others and has helps in raising had such amazing feedback and awareness at the same time. helped so many people.

What I love about volunteering is Nicola. to have the opportunity share my story which will hopefully inspire others to not feel ashamed or I volunteer because having had alone about having not just Crohn's Disease for seventeen Crohn’s or Colitis. A highlight of years now, I felt that it was my time volunteering would be my important for me to put my first ever event which was the IBD knowledge and experience to use wellness day, where I got to meet in providing support and everyone for the first time and information for those going participate in helping run what through the same." Three things I was a very successful event. love about volunteering is being able to meet with and provide Ziyad

Crohn’s and Colitis UK Berkshire Local Network Newsletter Page 4

MY IBD CARE ACHIEVES TOP SCORE ON THE ORCHA APP STORE MyIBD Care is an app developed by Ampersand in partnership with Crohn’s & Colitis UK, which allows people to track medication and symptoms, plus patterns of diet,

sleep, exercise and pain. It's a cloud-based dashboard which gives healthcare professionals, friends and families of sufferers if Crohns or Colitis to understand how well, between appointments, someone I myself have been fortunate with Crohn's or Colitis is and how My background is in finance, enough to not come across Crohn’s effective different care pathways having worked the banking industry & Colitis in my life and used to be are. for 20 years and I was keen to find another person who knew nothing an opportunity to utilize my skill about this not-so-discussed The app also allows quick and easy disease. set to support a charity in my local access to our information when people need it. MyIBD Care allows community. I have always wanted to volunteer people to track medication and

To be honest I don’t have a huge but when deciding where to give symptoms, plus patterns of diet, amount of experience with Crohn’s my time to, Crohn's & Colitis UK sleep, exercise and pain. In or ulcerative colitis. Many years really stood out to me as many addition, information from Crohn’s ago, a friend was diagnosed with suffer from the not so well known & Colitis UK can be accessed Crohn’s, it took a long time for him IBD and Crohn’s & Colitis really quickly and when people need it. to get the diagnosis, during that help to spread awareness as well time he lost a lot of weight and as support those inflicted in the We are delighted that the app has was very ill. local community. entered the Orcha listings as the

highest rated app in its segment. Following his diagnosis, he was These inspiring objectives and stories are what have led me here able to manage his condition with Hundreds of digital health apps today and I am enjoying my role so diet and medication and was able are released onto the market each far and look forward to making to return to a normal and healthy day. For healthcare professionals, great strides in the future. lifestyle. Therefore, for me it’s knowing which is clinically

key to raise awareness and credible – and should therefore be Haruki understanding of the benefits of recommended to patients – and getting an early diagnosis. which is not presents a significant problem. Orcha seeks to address I am keen to learn a lot more this problem by applying a seven- through the work of the charity step framework to the evaluation and my involvement to gain a of health apps, with results being better understand the impact of published on Orcha’s website. living with colitis and the support available. Assessed in June 2019, MyIBD Care

achieved a rating of 85% in Having the confidence to talk Orcha’s tests – by some distance about it, that is not always easy the highest score achieved by any and takes lot of courage but app for IBD patients. The Orcha knowing that you are not the only review highlighted the one can be hugely beneficial on involvement of qualified your emotional wellbeing and is professionals in the development therefore likely to have a positive of My IBD Care, which was impact on how you approach developed with clinicians and managing the physical symptoms. patients at King’s College Hospital

and Bart’s Health. Zara

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DATES FOR YOUR DIARY CONTACT US

SEPTEMBER MEET UP BERKSHIRE LOCAL NETWORK Sunday 1st September 2019, 3PM Helpline: 0300 222 5700* Bosco Lounge, 55 Crockhamwell Rd, Website: www.crohnsandcolitis.org.uk/berkshire

Woodley, Reading RG5 3JP Email: [email protected]

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LONDON Crohn’s & Colitis UK Saturday 21st September 2019, 1 Bishops Square, Hatfield Business Park, AL10 9NE The Wesley Euston Hotel & Conference [email protected] Venue, 81-103 Euston Street, London, www.crohnsandcolitis.org.uk NW1 2EZ Charity registered in England Number 1117148 Charity registered in Scotland Number SC038632 A company limited by guarantee in England: company IBD WELLNESS DAY number 5973370 Saturday 21st September 2019, 11:30am Arborfield Village Hall, Eversley Road, HELPLINE RG2 9PQ 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). OCTOBER MEET UP Sunday 6th October 2019, 3PM Our team can: Bosco Lounge, 55 Crockhamwell Rd,  help you understand more about IBD, diagnosis and Woodley, Reading RG5 3JP treatment options  provide information to help you to live well with your condition  help you understand and access disability benefits NOVEMBER MEET UP  be there to listen if you need someone to talk to Sunday 3rd November 2019, 3PM  put you in touch with a trained support volunteer Bosco Lounge, 55 Crockhamwell Rd, who has a personal experience of IBD Woodley, Reading RG5 3JP CONTACT US BY: Telephone: 0300 222 5700* Mon, Tue, Wed and Fri – 9 am to 5 pm The Berkshire Local Network has made every Thu – 9 am to 1 pm reasonable effort to ensure the content of Email: [email protected] this newsletter is accurate but accepts no responsibility for any errors or omission. Web Chat (Live Online): see our website for details The views of the contributors do not necessarily reflect the views or policies of *Calls to this number are charged at a standard landline rate Crohn’s and Colitis UK and no reference in or may be free if you have an inclusive minutes’ package. this newsletter to any product or service is Calls may be recorded for monitoring and evaluation purposes. intended as a recommendation.