On 20 July 2022, there was a first-of-its-kind 6 km relay race to the UK Houses of Parliament in Westminster. This event was for the launch of a new ‘call to action’ statement for the stoma community. The race had a great turnout and was led by people with a stoma, along with key members of the stoma communities, such as nurses and representatives from the charities. This event was organised and hosted by the UK’s biggest three stoma charities, Colostomy UK, the Ileostomy and Internal Pouch Association (IA), the Urostomy Association (UA), and Coloplast UK, the local branch of the global stoma care brand Coloplast. There was also significant involvement from some Members of Parliament (MPs), including Paul Bristow, who is the local MP for the city of Peterborough, where Coloplast UK is based. The idea was to educate Parliamentarians about the steps they can take to support those living with a stoma across the UK and ensure that they can also live very active lives through provision of good stoma equipment.
Collective action
The race to Parliament actually began last summer – metaphorically at least – when Coloplast UK and Ireland and the three charities started working on a joint piece of research about quality of life for people with stomas with a specific focus on leakage. As a result of the research, a statement was developed which set out the improvements needed to ensure that everyone with a stoma has access to optimal care. As someone with a stoma, who also works in government affairs, I could see both personally and professionally that the research, as good as it is, could have been in danger of sitting on a shelf – so we wanted to bring it to life and ask policymakers to take action - and what better way to do this than as a collective stoma community! Campaigning alongside the three charities and their brilliant teams was an honour.
Hannah Gagen, Head of Government Affairs & Patient Advocacy, Coloplast UK & Ireland
Nurse Tracey Virgin-Ellison hands the baton to Coloplast’s Hannah Gagen at the start line
Doing the research
The event was the culmination of a process that began with a research project studying people with stomas. A research panel took data from several patient groups to create this call-to-action statement. Colostomy UK, the IA and the UA were invited to participate in the study, to bring together all elements of the UK stoma community. This study discussed problems experienced by those with a stoma, with a focus on leakage, and aimed to promote conversations among patients, clinicians and policymakers on how to solve them.
‘The race had a great turnout’
Loud and clear
‘The Ileostomy and Internal Pouch Association (IA) is very proud to have played a large part in this important research project underpinning this event, as well as the visibility created in the public eye through the relay run event. It is essential that those in Government, and those who influence the health service, understand the importance of providing high-quality pre-operative to post-operative care. It is also important to understand the challenges that those living with a stoma face on a daily basis, not just physically but mentally. We believe that everyone with a stoma should have access to the best possible care so they can live full and active lives. Sadly, there are still inequalities across the country, and people living with a stoma do not always have the freedom of choice of products that best suit their body. The voice of those living with a stoma should be heard and listened to, loud and clear. Quality of life should be paramount.’
Caroline Bramwell, PR & Communications Manager, Ileostomy and Internal Pouch Association
Making a statement
For those involved in the study, they wanted to bring the research to life and make sure that these factors were widely understood, but also acted upon. They developed the findings into a consensus call-to-action statement. A simple, two-page document was created that specifically suggests ‘recommendations for action by various stakeholders in the stoma community: policymakers; healthcare professionals; healthcare providers; community and employers; manufactures and suppliers.’ It outlined improvements needed to ‘ensure everyone with a stoma has access to optimal care so that they can live their lives to the full, whether that’s returning to sport, going on holiday, going to the cinema, taking their kids to the park, DIY, going to a restaurant, etc’ (Coloplast UK). The call-to-action statement listed suggestions for each category of decision maker. For example, healthcare professionals need to ‘deliver positive education’, healthcare providers need to ‘facilitate and enable equitable access to specialist stoma care’. Policymakers need to ‘commit to reviewing stoma care pathways’ while communities and employers need to ‘be aware that a stoma is a hidden condition and ensure clean disabled facilities. Manufacturers and suppliers need ‘improve information made available for those with a stoma, to better understand products.’ The statement also provided a three-step method to support people with stomas to live life to the fullest.
Giovanni Cinque (Colostomy UK), two attendees, Caroline Bramwell (IA), Hannah Gagen (Coloplast), Stephen Metcalfe MP, Holly Fleet and Hazel Pixley (Urostomy Association)
‘They wanted to bring the research to life’
Passing the baton
The call-to-action statement was printed out and physically carried by the relay team from the hospital to the doors of Parliament. The statement was used symbolically as the baton passed to each participant during the relay race. This action of carrying and passing the baton is representative of how knowledge about stoma care should be passed between patients, nurses and policymakers. The race began at a London hospital, continuing along a scenic route by the river Thames, before reaching the Houses of Parliament, where the baton was finally passed to MP Giles Watling. After the race, Watling invited runners and walkers into Parliament for a reception to celebrate their efforts in carrying the message across. This style of fitness-based event was also important in highlighting the importance of continuing exercise with a stoma and breaking down any stigmas around exercise in the community.
Aim of the game
‘The aim of the consensus statement is to set out the improvements needed to ensure that everyone with a stoma has access to optimal health care so that they can live their lives to the full. The reception at Parliament gave MPs an opportunity to learn about the steps they can take to support everyone living with a stoma across the UK. This project is only a part of what Colostomy UK have planned, with regards to engagement with Government. We’ll be happy to share more on that later in the year, when we release our new plans.’
Giovanni Cinque, Fundraising & Campaigns Manager, Colostomy UK
‘knowledge about stoma care should be passed between patients, nurses and policymakers’
Wielding influence
Some MPs were photographed with signs held up saying ‘I pledge to support my constituents with a stoma’. The presence of MPs was important, as it showed that this campaign for stoma care was able to reach policymakers directly and promote general knowledge around the subject, which is lacking within Government. Within the stoma care community, there has been a rise of activity on social media to empower ostomates and educate each other on matters, such as using products and new policies. For those familiar with the influential campaigners in the stoma community, a few of the well-known faces participating in the event and showing their support included Holly Fleet (@HollyApril1) and Mesha Moinirad (@MrCrohn’sColitis). Overall, the event was a success, and we look forward to reporting on future events hosted by these groups.
MPs learning about stoma care via use of prosthetics
Collage of all the MPs who pledged their support
Working together
‘It helped to raise the profile of those living with a stoma, and removes the taboo around this, so that, hopefully, if an MP is asked a question about stomas, they will at least know what they are. Where possible, working jointly with the other stoma charities like this is something that we would certainly consider doing again’
Hazel Pixley, Chief Executive Officer, Urostomy Association
Shabnam Ali is an editor and reporter for StomaTips
Email: stomatips@markallengroup.com