Natasha Rolls | Lead Specialist Stoma Care Nurse, University Hospitals Bristol and Weston NHS Foundation Trust, UK; Chair, Association of Stoma Care Nurses (ASCN) UK
Citation: EMJ Gastroenterol. 2026; https://doi.org/10.33590/emjgastroenterol/175XR122
Despite the recognised benefits of specialist stoma care, there is still no consistent, evidence-based long-term patient pathway across the UK. Why has this been so difficult to achieve, and what are the biggest barriers?
For lots of complex reasons related to the unique landscape of stoma care, and because nurses generally aren’t very good at shouting about their worth, I’m not sure that the benefits of specialist stoma care are completely recognised.
The benefits of specialist stoma care nursing have always seemed to fall under soft skills. These are valuable, vital, and essential, but it means that we’re not talking about prevention of re-admission, maintaining people in their own home, prevention of deterioration, the cost efficiencies of managing a good prescription service, or making sure your patients have the right products at the right time.
In stoma care, we aren’t targeted. We don’t have standards from the government level. There are pathways in the UK, lots of them, but there are no national frameworks. If you look at the National Institute for Health and Care Excellence (NICE) guidelines or the Royal College of Surgeons (RCS), there is no specific mandate to have stoma care services, which really impacts us.
At the Association of Stoma Care Nurses (ASCN) UK, we are now working with Getting It Right First Time (GIRFT) and the team on the Advancing Stoma Care Services (ASCS) project to bring about and mandate a national pathway.
This is in contrast to cancer nursing, where there is a pathway. Cancer nurses are now an essential part of diagnosis; patients are assigned a nurse specialist who takes them through this pathway. We can see the evidence in outcomes and in experience. There is a need for highly skilled, highly educated stoma care specialists, contrary to current policymaker opinion.
We also work very closely with industry, who are sometimes seen unfavourably by policymakers. Industry supports us enormously with our education, meaning that policymakers haven’t had to. All of this means that we have been rather overlooked and under-represented.
You’ve spoken previously about the disparities between specialist stoma care nurses (SSCN) and other gastrointestinal specialist nurses. Why do you think SSCNs continue to be undervalued, and what needs to change?
We’re seen as bag changers who are underestimated by policymakers and some of our own colleagues, who might question the need for advanced nurses in this area.
However, we work autonomously alongside colorectal surgeons and gastroenterologists. We need nurses working at an advanced level to notice deterioration, escalate where appropriate, set care plans, and initiate treatments. We are constantly evaluating.
I think other gastrointestinal nurses, particularly inflammatory bowel disease (IBD) nurses, are highly regarded and highly skilled, and what’s very clear, which may be controversial, is that they can offer support very much akin to our medical colleagues, the gastroenterologists themselves. IBD nurses have worked very hard and they have had their fights to get where they are. However, it’s clear that IBD nurses have reached an advanced level, in part, because of a buy-in from policymakers.
Nobody has identified that same need for stoma care. Either we are already filling that need so it is not being recognised, or at the other end of the spectrum, we are losing contact with patients with stomas after they leave the hospital. These patients are known as lost ostomates. There is a stigma associated with having a stoma, which is something I label as the ‘poo taboo’. It’s one of the reasons that these patients don’t tell their relatives or their friends. It’s also why we’re in 2026 and I meet patients who will refuse surgery because they would rather die than have a stoma.
These patients do get some support from industry who are consistently innovating, but what I’d like to see is them receiving care from the specialist nurses who are experts. Patients’ voices are also paramount as they can truly identify their needs to the advanced nurses.
There is a symbiotic relationship between stoma care nurses and patients with stomas, and by raising the value and credibility of either, this will help to improve stoma care and extinguish the associated stigma.
How can colorectal surgeons, gastroenterologists, and SSCNs work together to better demonstrate the clinical and economic value of specialist stoma care to NHS leaders and policymakers?
The first thing is awareness. My medical and surgical colleagues are amazing at what they do, but often their involvement with the stoma element of a patient’s care stops once they’ve formed the stoma.
If a stoma isn’t formed as well as we’d like, and there are often very good reasons why that happens, we’ll see that patient four or five times, more often than someone with a well-formed stoma. A nicely spouted stoma on a good abdomen can be fitted with the right product and followed up routinely. Someone with a poorly spouted stoma or an irregular abdomen needs much more input, and the impact on their quality of life is huge.
There’s also a fiscal impact because I’m seeing that patient more often, but that isn’t always measured or fed back. We need to communicate that better.
A good example is surgeons now routinely lip, or evert, colostomies because stoma care nurses fed back that patients get better outcomes. A decent lip means a better fit with their bag, fewer bags used, healthier skin, and a better quality of life. You can’t expect someone to know that unless they are told.
Nurses are not always good at shouting about our worth. We say: “I just chatted to them,” when actually we’ve taken someone from a place of despair to hope. That’s a huge intervention.
We need to learn from our medical and surgical colleagues. They’re very good with data and evidence, and we need to get better at evidencing our impact. Without the right support, outcomes will be worse and the impact will simply fall elsewhere. If someone can’t see me with sore peristomal skin, they’ll go to their GP, who may not know what to do, or they’ll go to the emergency department. We need to be better at detailing what our absence would really mean.
How do current UK stoma care standards compare with those in other European countries, and are there examples of best practice that we should be adopting?
ASCN UK produces a set of guidelines, and we run the association against a set of standards. There are equivalent organisations in other countries, as well as the European Council of Enterostomal Therapists (ECET) and the World Council of Enterostomal Therapists (WCET). They’re amazing organisations, although their remit is broader because they also cover wound care, tissue viability, and continence. ASCN UK is unique in that we’re the only organisation that represents only stoma care nurses. In many other countries, stoma care nurses also work across tissue viability, continence, or other specialist areas.
There are some brilliant examples of practice, particularly in local areas where people are working tirelessly to deliver the best possible service. But I think, globally, nursing is facing many of the same challenges. Nursing is often seen as expensive because we’re such a large workforce, yet people forget there’s clear evidence that having more registered nurses leads to better patient outcomes, including improved longevity and life expectancy.
There’s always more we can learn from Europe and the rest of the world. At ASCN UK, our links with WCET and ECET are really important. I do think we’re probably at the vanguard at the moment, but whatever we do, if we can inform and enhance practice elsewhere, then that’s absolutely what we should do. Sharing practice is always really important because we can always learn from each other.
You go to a WCET conference and sometimes people can be a little doubtful, but then you’ll hear someone from a rural Chinese hospital present the incredible things they’ve achieved with almost no resources, and you realise there’s more we can learn from everybody. Not only should we be learning from one another, but we should also be reaching out and supporting each other.
As honorary chair of the ASCN UK, what do you see as the organisation’s biggest achievements so far, and what are the key priorities for the years ahead?
For me personally, there have been a lot of achievements. ASCN UK has gone from strength to strength, although it has always been an amazing association. The biggest achievement is the ASCS project, which will mandate a national pathway of evidence-based best practice. The evidence and pathways we’ve written are currently with the GIRFT team, who are validating the evidence and putting it into what they call swim lanes.
When I first became a stoma care nurse, I remember thinking there was no actual pathway or national mandate. We were all working in different ways. I came back to stoma care in 2015 and was horrified that there was still nothing to mandate nationally that stoma care nurses exist or that patients should have contact with one. That’s the biggest achievement for me.
We’ve grown our membership and profile through evidence and professionalism. We’re committed to representing stoma care nurses because they advocate for patients.
Moving forward, I’d like ASCN UK to continue to be political; not party political, but political with a small ‘p’, so that when there’s a stoma care issue or national review, we’re the organisation people come to.
I’d really love us to get involved in our own research. The evidence base in stoma care is still scarce and not always as robust as it could be. I’d love to see a national, nurse-led piece of research registered with the National Institute for Health and Care Research (NIHR).
Finally, I want people to understand that stoma care isn’t expensive simply because products are expensive. The complexity lies in getting the right product to the right patient. A stoma care nurse understands those complexities and can ensure patients receive the right products and support, because this specialist knowledge is essential for good outcomes.
Looking ahead, what is your vision for the future of ASCN UK, the specialist stoma care nursing workforce, and ultimately for people living with a stoma?
I’d like to see specialist nursing and nursing more broadly raised. The work of Alison Leary MBE, Deputy President of the Royal College of Nursing (RCN); Paul Trevatt MBE, former member of the RCN’s Professional Nursing Committee and RCN Fellow; and Dawn Butler, British Member of Parliament representing the constituency of Brent East, on protecting the title ‘nurse’ is a huge piece of work. At the moment, anybody can call themselves a nurse, whether they’ve been struck off or have never been to university. You can’t call yourself a registered nurse because that’s a protected title, but nurse itself isn’t, and I think that’s where confusion around nursing roles begins.
The titles around nursing are very woolly. I’m uncomfortable with terms like practitioner because what is a practitioner? My role and my level of practice are two different things. I’m a clinical nurse specialist in stoma care working at an advanced level.
I’d like nursing to be better protected and represented nationally. I’d also like specialist nursing to be recognised for the unique role it plays. I’m incredibly proud to be a specialist nurse, and I’d like that reflected in policy.
I’d like people to be proud to be nurses. I’d like to see nurse numbers increase, universities continue to offer nursing courses, and fewer nurses leaving after only a couple of years. I want nursing to be recognised as an educated profession and celebrated for the difference it makes.
If you raise nursing, you raise what nurses do, and you raise patients. There are more ostomates than ever sharing their stories and helping reduce stigma, but there are still many people staying at home and not engaging with life fully.
I’m passionate that nursing isn’t getting the recognition it deserves. Nurses keep people alive, improve quality of life, and, when appropriate, help people die comfortably and with dignity. Nurses are better for patients.
