It’s no secret we’ve been busy raising awareness and creating a better understanding of Inflammatory Bowel Disease for many years now. We too have been hosting fun filled activity days and providing relaxed social opportunities for our community. We’ve been having important discussions to influence practice and policies, supporting research and creating a safe online space where we can connect with people who know the daily challenges which come with having a chronic illness.
Lets take a closer look below at some of the projects GetYourBellyOut have taken on in recent years to see if we can entice you to get involved with future focus groups, projects or campaigns which provide support, education, improve standards of care and aid research for people around the globe living with Crohn’s Disease or Ulcerative Colitis.
Pioneering virtual stoma care clinic ft Clinimed & Securicare
GetYourBellyOut were keen to deliver support to ostomates who were struggling to receive advice or guidance from their medical teams, with regards to the issues they faced in trying to manage their ostomy or sore skin. So an idea was born to host a pioneering, 20 minute 1-1 private nurse-led web chat in collaboration with one of the well known and highly thought of ostomy companies. This would be the first opportunity of its kind, 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.
A filmed tour by S4C of Pelican Healthcare’s ostomy factory
We had such an exciting day with members of our community touring an ostomy factory to see first hand the work which goes in to creating these invaluable products which give 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 the initiatives which are in place to ensure waste material is kept to a minimum to lessen the impact on the environment. What’s more, our day was captured on film by the welsh tv channel S4C who were keen to learn more about the magic of GetYourBellyOut.
Motivational talks with the 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 views, 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 wider public and policy makers. Our motivational talks have received rave reviews and we have been known to move our audiences to tears (something of which we’re told is a good thing?)
Supporting research days & students studying for their PhD’s/Masters
Supporting research takes far more than simply throwing money at a problem, which is why each year we do what we can to encourage some of the brightest minds to take up the challenge of exploring the fascinating world of IBD.
Over the years we have been known to attend research days and assist students with their studies. Some of the topics we have tackled so far have been Nottingham University – 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.
We also aid research by encouraging our community to get involved in survey participation to express their views, provide feedback on product prototypes and canvas their opinions.
Supporting initiatives at Parliament & the Welsh Assembly
GetYourBellyOut have been busy campaigning on issues in Parliament and the Welsh Assembly by assisting Crohn’s and Colitis UK to highlight the IBD standards, launch their ‘My Crohn’s and Colitis Care’ to MP’s, championing their ‘Not every disability is visible’ and ‘More IBD Nurses’ MP letter campaigns. 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 more widely 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.
Facebook Certified Community Managers helping to shape communities
We were proud to have been asked to help Facebook shape their Certified Community Manager exam, which recognises our proficiency in creating engaged, thriving communities and ensures we are both highly trained and experienced to be able to provide a safe space for our amazing community members.
We invest a great deal of time on the really important things, such as building people’s confidence, kindling new friendships, reducing isolation and providing support 365 days a year by offering access to our online support group which is filled with like-minded people.
In addition we’re regular visitors to Facebook HQ where we network and connect with fellow community leaders or influencers to raise important topics of discussion around mental health, safety and inclusion. Our biggest accolade was being invited to Facebook’s first ever European Communities Summit to showcase our inspiring #GetYourBellyOut community.
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.
Whilst our initial aim was to hand out 200 complimentary lanyards, we were later able to significantly increase the number of lanyards sent out around the globe thanks to the generosity of our community members leaving small donations along the way. This is simply one example of how your kind donations can help others by paying it forward.
Mental health podcasts, media & video interviews about IBD
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 numerous mini documentaries (Such as talking about IBD on S4C or a BBC feature about GetYourBellyOut). We too spend time being interviewed by ostomy or pharmaceutical companies who are keen to hear a patients perspective on a whole host of topics, from mental health or the every day challenges our IBD community face. These are a great opportunity for us to feed back what we learn by keeping our ears close to the ground and raising topics which we know are important to you, our community members!
Supporting stoma nurse & Gastroenterologist 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 to share our communities feelings with those who have dedicated their lives to looking after people living with Inflammatory Bowel Disease, to encourage them to not only focus on treating the physical illness, but consider how a diagnosis affects a person as a whole.
We were surprised to hear discussions taking place of how patients weren’t keen to see real life images of what their illness looks like. We were about to ask our community members what they wanted by running a poll on our social media, and were thrilled to see how the results backed our initial theory of how misguided these views were. We are blessed to have a platform in which we can share your feedback directly with the people who create this type of educational content as means of supporting patients. It’s important we continue to attend conferences like these, where usually patients don’t get a front row seat, to be able to advocate on your behalf.
Information 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. We have been known to camp out overnight to ensure we are available to provide an information stand at various NHS hospitals or company open days. These are always a great way for us to connect with fellow patients and meet the IBD teams looking after members of our community. The likelihood is that your IBD team knows all about us and the initiatives we provide each year to support people, like ourselves, living with IBD.
Printed IBD nurse specialist business cards
It goes without saying how valued our IBD nurse specialists are, so 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 appreciated, GetYourBellyOut sprang into action and designed 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 going through the wash. We were later told of how excited and grateful she was for this small act of kindness and what a difference this small act of kindness had made.
Implementing information stands & meetings with NHS hospitals
Whilst some NHS hospitals have a really great setup when it comes to patient information stands, sadly this isn’t the case across the board. Some hospitals are struggling to meet the minimum standards with regards to the number of IBD nurse specialists which should be available for the number of patients on the books. Whilst we can’t change things over night, we have made a great start in meeting with hospitals to encourage them to provide information tables so patients can access and browse the necessary education needed to ensure patients know how to manage their chronic illness better. Our hope is to continue creating projects which streamline these essential services to ease the burden on our IBD teams – we’re so excited to share the outcomes of our latest project in the coming months. Stay tuned!
GetYourBellyOut is an award winning campaign
It has always been 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. Over the years our hard efforts have been recognised and we have a few accolades to show for it. Whilst award dinners are lovely, its the credibility which these awards bring which make the hours we invest all worthwhile. To date we have won a Pride of Britain Award, been named WEGO healthcare finalists, are listed as Community champions for CCUK, South Wales Community Awards finalists, are shortlisted in the Digital Women’s Female Led Community of the Year category and are honoured to have been shortlisted for a Queens Award for Voluntary Service. Here’s hoping this news give you the confidence to know you’re in good hands.
Click here to continue your journey of discovery
We hope you’re having a great time learning more about GetYourBellyOut and all the different projects we undertake each year for people living with Crohn’s Disease & Ulcerative Colitis. On the next page you’ll learn more about the social opportunities and subsidised activities we provide and surplus ostomy collections.
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!