At Coloplast, we know the formation of a stoma is a life-saving procedure for many, but it can also pose considerable challenges for individuals and takes time to adapt (Di Gesaro, 2016). This is why it is essential for everyone with a stoma to have equitable access to high quality care and specialist advice (Osborne et al, 2022).  

PERSON-CENTRED RESEARCH  

To articulate the current challenges faced by people with a stoma, Coloplast used a research method called a modified Delphi, which collated the output from several patient focus groups to create a set of ‘Calls to Action’, with a particular focus on the issue of leakage. The three leading UK stoma charities — Colostomy UK, Ileostomy and Internal Pouch Association (IA), and Urostomy Association (UA) — were invited to participate in an effort to bring together all parts of the UK stoma community. Their involvement was important to capture the true breadth and scale of the experiences of all people with a stoma. The issue of leakage was the focus because this has a significant impact on quality of life and can lead to painful skin complications, unpleasant odour and noise, social anxiety, isolation and career and relationship difficulties (Jeppesen et al, 2022).  

So, what did this research find? What became clear is that stoma-related complications present many challenges and while stoma care in the UK is generally of a high standard compared to other countries, there is still variation across the country in both the provision of care and how it is funded. In short, significant consensus was found from the participants as to where improvements could be made to help more people with a stoma live their lives to the full, as well as reduce the impact on the NHS by preventing cases of stomas being badly managed (Aibibula et al, 2022). 

#STOMASINPARLIAMENT — A ‘FIRST-OF-ITS-KIND’ APPROACH  

This research gave much to reflect on and we felt it was important that it was shared more widely with policymakers to create momentum for change. The partnership working with the three stoma charities was therefore continued, with the research being used as a foundation to create a simple, two-page policy paper and ‘Calls to Action’ document, which sets out what needs to happen to deliver optimal care and who needs to make these changes. We also wanted to create the opportunity for people with a stoma to have their voices heard and to be the ones directly presenting the data and recommendations to Parliamentarians. This is where we decided to get creative in our approach by holding a ‘first-of-its-kind’ relay to Parliament to launch the ‘Calls to Action’.  

The relay, which started at a London hospital six kilometres from Parliament, served as a symbolic display of the activities that people with a stoma can do when they receive high quality care and support. For some, living life to the full may mean returning to sport, but for others it might mean going on holiday, going to the cinema, taking their kids to the park, doing DIY, or even going to a restaurant.  

Tracey Virgin-Elliston, lead nurse specialist in stoma care at the Chelsea and Westminster Hospital NHS Foundation Trust, handed the baton to the first relay participants. The relay itself was then led by people with a stoma (including the amazing seven-year-old Jessica and her stoma teddy), alongside other members of the stoma community, including nurses, third sector representatives and Parliamentarians, including Peterborough MP, Paul Bristow. Using the ‘Calls to Action’ document as a ‘baton’, participants followed a scenic route along the river Thames before passing the baton to the event host, Giles Watling MP, directly outside of Parliament. A reception then took place not only to celebrate their efforts to carry this important message from patients to policymakers, but also to serve as an important opportunity to educate Parliamentarians about the steps they can take to support everyone living with a stoma across the UK. Over 20 MPs and their teams attended the reception, getting an introduction to stomas via the use of prosthetics while also pledging their support for the ‘Calls to Action’.  

It was a memorable day for all involved. Anne Marks, a relay participant who supported the development of the ‘Calls to Action’ research, put it best when she said:  
 
Coloplast was delighted to work with Ileostomy and Internal Pouch Association, Urostomy Association and Colostomy UK on this special and important event. We also want to thank all of the people with a stoma who took part in the research, the event, and shared information on their social media channels (check out #StomasInParliament). We continue to be united in our commitment to ensure that the voice of the stoma community is heard at the highest levels and believe that the relay has played a vital role in this. There is much more to be done to improve outcomes for all people with a stoma and we are already planning what comes next. 

Wendy Osborne is clinical governance lead, Clinical Services, Coloplast UK.