We have been busy raising awareness, creating a better understanding of Inflammatory Bowel Disease, hosting fun filled activity days and providing relaxed social opportunities for our community. We too have been influencing practice and policies, supporting research and creating a safe online space where our ‘bellies’ can connect. Below is an example of these different projects in the hopes of enticing you to get involved with future focus groups, projects or campaigns which provide support, education, and advocacy for a global community of people affected by Crohn’s Disease or Ulcerative Colitis.
1 – Virtual stoma care clinic
We hosted a pioneering, 20 minute 1-1 private nurse-led web chat in collaboration with Clinimed & Securicare to deliver support to ostomates who were struggling to receive advice or guidance from their medical teams when managing their ostomy or sore skin. This pioneering opportunity was offered exclusively to members of our community. It was hoped these nurse-led web chats (be these ostomy or IBD related) would be the future of care, and we’re encouraged to see this now becoming a reality.
2 – Filmed ostomy factory tour
Members of our community received a tour of an ostomy factory to see first hand the work which goes in to creating these invaluable products, providing ostomates the confidence to tackle life post surgery. We learnt how ostomy bags were produced by the machines, whilst urostomy bags were still created by hand and initiatives in place to ensure waste material is kept to a minimum. The day was captured on film & featured on the welsh tv channel S4C.
3 – Motivational talks with NHS, ostomy & pharmaceutical companies
Our aim, from the very start, was to be able to give our IBD community a voice. A platform in which we could accurately represent the thoughts and feelings of our community and share these real life experiences of what life is really like living with IBD with patients, hospitals, companies, the public and policy makers. Our motivational talks have received rave reviews.
4 – Immune Compromised Social Distancing lanyards
Our immune compromised social distancing lanyards were designed specifically with our community members in mind as we understood the importance of keeping everyone safe during the Coronavirus pandemic. We were able to significantly increase the number of lanyards sent out around the globe to over 1,200 thanks to generous financial donations.
5 – Mental health podcasts, media & video interviews
Our ground-breaking approach has enabled us to raise awareness of Inflammatory Bowel Disease on a large scale by sharing our own personal experiences through global media coverage and features in mini documentaries on S4C and BBC. We too spend time being interviewed by ostomy or pharmaceutical companies keen to hear a patients perspective on topics such as mental health or the every day challenges our IBD community face.
6 – Stoma care nurse & Gastroenterology Conferences
GetYourBellyOut has spent time with IBD nurses, Stoma nurses, Gastroenterologists, pathologists, ostomy companies, researchers, pharmaceutical companies, charities and influencers at a range of conferences across the UK. It is important we continue to attend conferences like these to represent the patient’s voice and advocate on your behalf.
7 – Stands at NHS hospital and company open days
An area where we thrive and have a large impact is giving presentations to NHS staff, pharmaceutical and ostomy companies about the impact #GetYourBellyOut has had on the world and sharing real life accounts of IBD. These are always a great way for us to connect with fellow patients and meet the IBD teams looking after members of our community.
8 – Contact information cards for IBD nurse specialist
Imagine our surprise upon hearing how an IBD nurse was having to hand out her contact information to patients on a piece of paper, as being new to her post she hadn’t yet been given anything more substantial to write her details on. Wanting to ensure this nurse felt valued and appreciated, GetYourBellyOut sprang into action to design business cards which she could confidently hand to her patients, safe in the knowledge these details were less likely to go missing or accidently end up in the wash.
9 – Information stands & meetings with NHS hospitals
Some hospitals are struggling to meet the minimum standards with regards to the number of IBD nurse specialists available for the number of patients. Whilst change doesn’t happen overnight, we have made a great start in encouraging hospitals to provide information tables so patients can access and browse the necessary education needed. Our hope is to continue creating projects which streamline these essential services to ease the burden on IBD teams.
10 – Supporting research days & students with their PhD’s/Masters
We try to encourage some of the brightest minds to take up the challenge of exploring the fascinating world of IBD and encourage our community to get involved in survey participation to express their views, provide feedback on products and canvas opinions.
We attend research days and assist students with their studies. Some topics we have tackled have been Nottingham Uni – Social media & IBD, Kings Collage London – Fistulas & Crohn’s Disease, University of Manchester – Everyday lives of young people living with an ostomy, Leeds Beckett Uni – Psychology Identity & IBD management, Uni of Roehampton – Surgery & impact on mental health and University of Sheffield – Experience of sleep in IBD.
11 – Initiatives at Parliament & the Welsh Assembly
GetYourBellyOut campaign on issues in Parliament and the Welsh Assembly by assisting CCUK to highlight the IBD standards, launch their ‘My Crohn’s and Colitis Care’, ‘Earlier diagnosis’, ‘Not every disability is visible’ and ‘More IBD Nurses’ campaigns to MP’s. We were also invited to the Welsh Assembly by Respond Healthcare to launch their #BeTheChange Campaign, calling for changes to be made in society – tackling everyday challenges that ostomates and those with invisible illnesses may face. GetYourBellyOut are proud to support such important initiatives and are happy to add our voice to those asking for change or improved standards of care.
12 – Facebook Certified Community Managers shaping communities
We were asked to help Facebook shape their Certified Community Manager exam, which recognises our proficiency in creating engaged, thriving communities and ensures we are highly trained and experienced in providing a safe online space for our community members.
We are regular visitors to Facebook HQ to network and connect with fellow community leaders or influencers to raise important topics of discussion around mental health, safety and inclusion. Bring invited to their Facebook’s first ever European Communities Summit was wonderful.
13 – GetYourBellyOut is an award winning campaign
Our aim to provide a first class service and create the type of community we wished was available when we were first diagnoses with IBD. Whilst award dinners are lovely, its the credibility these accolades bring which makes everything worthwhile. We have won a Pride of Britain Award, been named WEGO healthcare finalists, Community champions for CCUK, South Wales Community Awards finalists, shortlisted in the Digital Women’s Community of the Year category and shortlisted for a Queens Award for Voluntary Service.
14 – Subsidised and free activity days
We provide subsidised activity days, as and when we can. These days out challenge our attendees and help lessen their social anxieties, without the burden of having to find the finances. We are proud to have been able to subsidise evenings of bowling and paid for places so members could join us at action packed days out across the country. We can only continue providing these important opportunities if the funding is available so please consider making a donation as these subsidised activity days make a huge difference to people’s confidence!
15 – National social opportunities for hundreds of guests each year
Our GetYourBellyOut balls, which are a national celebratory event with hundreds of guests in attendance. These large events bring a wide variety of people and companies together in a comfortable environment. Our advocacy efforts have enabled us to subsidise the cost of these party tickets, which gave even more members of our community the chance to attend. We have also been able to donate a handful of tickets each year thanks to the generosity of our members, who know first hand the impact attending an evening such as this can have.
16 – Community led, local social opportunities
#GetYourBellyOut understands the importance of a good support system and have seen first-hand what a difference it can make. As a result we actively encourage our community members to attend our local events as these provide a great platform for friendships to flourish, thus in turn reduces feelings of social anxiety and isolation. These events, often organised in a relaxed environment, in conjunction with our supporters are held to give people a better understanding, promote acceptance and provide an opportunity for open discussion with people who truly know what it’s like living with Crohn’s Disease or Ulcerative Colitis.
17 – Evening of Trampolining and focus group fun
Focus groups are always great fun, and even more so when surrounded by good company. Our evening at Bristol’s AirHop trampoline park started off with hours of giggling as we got to grips with all the action packed activities on offer, before settling down for refreshments and a focus group to discuss Respond’s new swimwear range. The insights gathered during this focus group were invaluable to the company designing this ostomy specific swimwear range and we’re grateful to them for their support as evenings such as these have in the past only been made possible due to kind sponsorship.
18 – Advice and guidance to fellow IBD charities or causes
Creating strong communities is no easy feat as it takes a lot of time to nourish the bonds needed to collectively campaign for change. The Irish Society for Colitis and Crohn’s Disease, Crohn’s and Colitis UK, A bear named Buttony, the Breakaway Foundation, Sepsis Trust New Zealand and Hospices of hope are just a handful of fellow IBD charities or causes which GetYourBellyOut promote, provide advice or guidance to each year so that their work can also flourish and bring substantial benefit to their communities too.
19 – ‘Can’t Wait’ Card information packs
Launched in 1987, the Crohn’s and Colitis UK ‘Can’t Wait Card’ has helped thousands of their members gain access to bathroom facilities in an emergency without the embarrassment of having to explain their urgent need in public.
With their blessing, #GetYourBellyOut created information packs, which outlined the initiative and how retail outlets or businesses could get involved. A modern twist was added by the inclusion of an easily recognisable window sticker in conjunction with the card which stores and restaurants could use to support this scheme. A similar scheme is underway in Canada and its hoped the UK will follow too.
20 – Influencing practice & policy
The #GetYourBellyOut community was saddened to see this distasteful advertisement campaign being proposed by the Canadian Government as means to deter people from smoking.
GetYourBellyOut proudly stood shoulder to shoulder with the incredible men, women and children bravely tackling life (and other peoples’ judgements) with an ostomy to ask for a change. As a result the Canadian government took the IBD & Ostomy communities feedback on board and confirmed that an ostomy will NOT be used in their advertisement as means of deterring people from smoking!!
21 – Lockdown Quiz nights during Covid-19
As the impact of the Coronavirus rumbled on, our community, who fell into the vulnerable category and where advised to shield themselves at home, came together to host a virtual quiz night. Every Friday these quiz nights gave members a focus and an hour or two where we could unwind knowing we were in contact with people who understood the importance of keeping one another safe by staying at home. These nights were a roaring success and a creative way to continue kind fundraising efforts for our not-for-profit.
22 – GetYourBellyOut’s charitable calendar
Back in the day when GetYourBellyOut was barely a year old, we were keen to create a charitable calendar to raise awareness & funds for the IBD community. We invited our members to share their gorgeous GetYourBellyOut photos with us which made for a unique and inspiring way to put IBD in the forefront of peoples minds.
We are delighted to see how follow IBD & ostomy causes have since taken up the mantel of creating these yearly calendars showcasing so many amazing bellies along the way.
23 – Ostomy Christmas appeals
We teamed up with Hospices of Hope to deliver surplus ostomy supplies to countries such as Albania, Moldova and Romania. Our aim was to ship a pallet FULL of surplus ostomy supplies otherwise be destined for landfill. The surplus ostomy supplies you sent us enabled us to fill 26 boxes in our first appeal and 35 boxes upon our second and generous donations helped us cover the shipping costs. A BIG heartfelt THANK YOU for your incredible support. What a magical gift!
24 – Increased awareness and understanding by sharing stories
We are inspired by the stories on our social media, of how members overcame their hardest times, found comfort by connecting with others who understood what it takes to power on through the day. Sharing your stories has been so impactful in helping to raise awareness and create a better understanding of Inflammatory Bowel Disease.
25 – IBD teams pamper packages
Off the back of the Covid-19 pandemic, our community came together to host a fundraiser which enabled us to create 10 pamper packages. These self care packages were later distributed across four hospitals in the South Wales area as a small token of gratitude for all these teams do to provide support.
26 – Adventure and confidence building weekends
Thanks to a Crowdfunding appeal and kind sponsorship from our corporate partners, GetYourBellyOut has been able to host two action packed weekend breaks for members of our IBD community. These weekends have had a tremendous impact upon the 36 attendees.
27 – GetYourBellyOut’s mini documentary – ‘Living with IBD’
Being selected as 1 of 10 to represent the UK as part of Facebook Communities’ Accelerator Program enabled us to create a 24 minute documentary showcasing the lived experiences of Keith, James and Yvonne and the impact IBD has had upon their lives. This film was later premiered at a quaint movie theatre in Islington, London.
A 2017 survey of 12,000 people living with IBD showed 48% of under 30’s felt isolated and lonely. Your donations are helping us tackle these alarming statistics as 97% of GetYourBellyOut members said they had seen a benefit from being a part of our community!
It’s always great to see how your support can enabled your favourite cause to deliver meaningful change. With this in mind we’ve created a summary of the difference GetYourBellyOut CIC has been able to make thanks to the amazing support received from donors like you!