There are over five and a half million disabled people in the UK workforce, and that is a diverse group in itself – there is no one-size-fits-all approach to disability inclusion. Many people have hidden disabilities that require flexibility and certain facilities in place.
Disabled toilets are often designed with wheelchairs in mind but many fail to consider the needs of those with stomas and other hidden disabilities.
In this article, Caroline Bramwell, PR and Communications Manager at IA (Ileostomy and Internal Pouch Association), talks about her experiences with a stoma and how she and IA would advise employers on how best to support employees with stomas or internal pouches.
Q: What is a stoma?
A: A stoma is where the end of your intestine will come out through the wall of your abdomen. There are different types of stoma; an ileostomy is formed from the end of the small intestine, or some people have a colostomy which is formed from the large intestine. Some people have a urostomy, which is for the bladder rather than bowel. Each performs differently, so never assume a stoma is generic.
Q: What is an internal pouch?
A: An internal pouch is for people who cannot have, or who've decided they don't want to have a stoma bag on the outside of their abdomen to collect their output. So, they’ve had surgery where their small intestine has been created into an internal reservoir which allows individuals to use the toilet as they would have done before surgery.
Q: How many people in the UK workforce are affected by stomas?
A: The stats, as far as we can tell from research that's been done, are that between 165,000 and 200,000 people in the UK have a stoma and typically around 21,000 stoma surgeries are performed each year.
They may not all be in the workforce but it's a large proportion of the population. If you can imagine a percentage of them are in the workforce, that would be a lot of people, and often you would never know unless they told you.
Q: How does having a stoma bag or an internal pouch impact people at work?
A: Most people will have their routines and carry a spare stoma bag and other supplies with them. In the case of those with an internal pouch, they may carry skin creams and a bidet bottle. But employers should bear in mind that someone with a stoma bag or internal pouch may, on occasion, have an issue with leakage, causing more urgent need for the toilet. In particular, they should have access to water in the cubicle, so typically they would need to use an ‘accessible toilet’. Particularly, those with an internal pouch, may need to use the toilet more frequently.
I’ve heard worrying stories from people whose stoma bags were about to leak, and they needed to change their bag – the last thing you want is to be waiting for the accessible toilets, only for a non-disabled colleague to come out, having only used it for convenience and not because they needed that facility.
It's important for the employee to feel comfortable and reassured that the employer has thought of everything. That's a big part of it because some people might be anxious in a workplace about their bag leaking and needing to use a loo urgently. So, anxiety can come into that for some people.
It is also useful for employers to put in place a ‘buddy system’ for those who might need to use the toilet urgently and need someone to step in for them in an instant. For example, in a teaching environment where a teacher with a stoma or internal pouch might need to urgently disappear to the toilet, they should be able to use a ‘safe word’ that indicates they urgently need cover, with no questions asked.
Q: What should employers know about stomas and internal pouches?
A: Employers should understand that employees with these conditions may need to use the toilet more frequently and should not be treated as though they are ill. It’s important to provide appropriate facilities and support without adding pressure or stigma.
I’m thinking about people working in call centres, which often have strict rules about breaks and less freedom to go to the toilet than other workplace environments. For employees with a stoma or internal pouch, this can increase anxiety due to the possibility that they will need frequent bathroom access. It’s crucial for such workplaces to have policies that address this, allowing flexibility for these employees. It would be beneficial if this could be applied as a general rule.
What I see a lot of companies do is put the picture of a wheelchair on toilets and call them disabled toilets, when it’s actually more than just wheelchairs. These should be accessible for people with ulcerative colitis, Crohn’s disease or other bowel conditions that may not have had surgery, as well as people with stomas and internal pouches.
For toilet facilities to be stoma friendly, they need to have running water and a shelf to place the stoma kit on; i.e. wipes, replacement stoma bags and anything else we need.
I’ve been in toilets, particularly in service stations, where I’ve had to balance my kit on top of a toilet roll holder and use a normal cubicle because there are no facilities. Having to put your kit on the floor is horrible, because it all needs to be sanitary. It goes on your skin so it absolutely must be clean and hygienic.
It is important that companies are inclusive, and actually implement this ethos, rather than just pay it lip service.
Q: What can employers do to support employees with stoma bags or internal pouches?
A: Firstly, it’s fundamental that employers provide accessible toilets. For them to be considered stoma-friendly, toilets need to have running water, a space for supplies to be laid out, and sanitary bins, regardless of gender.
It’s natural for me to think that sanitary bins are essential anyway because I’m a woman, but for men too. While we do have bags to tie up our used stoma bag, we also need somewhere to dispose of them.
Consider signage that specifically indicates stoma-friendly facilities, such as we’ve seen in places like Spain. Signs on those toilets show a character with a stoma bag.
Flexibility is another key area employers should look at. Permitting employees to use the toilet as needed, without restrictions, is crucial.
Building an inclusive company culture, in which leaving a room abruptly to go to the toilet, even in meetings, is not considered rude. If there were no restrictions on toilet breaks for anyone, people with stoma bags wouldn’t have to disclose their condition if they didn’t want to and it wouldn’t need to become a reasonable adjustment that singles some people out.
Some companies will have a designated HR representative who understands stoma-related needs and can offer support, but this isn’t very common in businesses. It would be great if this could be a standard HR role; someone who specialises in disabilities. This can help employees feel more comfortable discussing their needs.
Business leaders must ensure they educate all staff about hidden disabilities and the importance of accessible facilities to create a more inclusive workforce and company culture overall. Education for employees can help ensure accessible toilets are not misused by those who don’t need them and are readily available to those who do. It’s not about banning certain people, because some disabilities are hidden, but just helping everyone understand the importance of leaving disabled toilets available to those who need them if you know you don’t need it.
People with hidden disabilities often feel uncomfortable disclosing them and asking for reasonable adjustments. Employers have a responsibility to provide support for disabled employees under the Equality Act (2010). Raising awareness and proving themselves to be an inclusive organisation can help people feel more comfortable disclosing and asking for what they need.
Q: How can the recruitment process be made more accessible to candidates with stomas or internal pouches?
A: Employers that want to improve their employer brand and attract the best talent will advertise their inclusivity – the more specific this is, the better. Clearly state in job postings that the company is stoma-friendly and inclusive, rather than just ‘disability-friendly’. It’s a selling point that will appeal to anyone with a stoma or bowel condition.
Some companies will already have disabled toilets with a sink and surface to place a kit onto, but not necessarily know how valuable those are to a substantial group of people. Being more informed about it can help them highlight stoma-friendly facilities in their job descriptions.
In addition, business leaders should ensure the recruitment process does not place the burden on candidates to disclose their condition unless they choose to, by providing a ‘prefer not to say’ option in application forms. While it is important that they do so when they’re ready to ask for adjustments, some may feel uncomfortable doing so for a new employer. Choice is the best thing you can offer anyone in the workplace.
Q. How can IA (Ileostomy and Internal Pouch Association) help people who have stomas and internal pouches?
A. We want people with stomas and internal pouches to know that we are here to support them because we've lived it. I have a stoma myself.
IA offers ‘One2One’ peer support from volunteers who have been through the same situation as you or are the partners of those who have – whether you’ve been told you need surgery or if you’ve already got a stoma or internal pouch.
IA also offers support through therapy, providing the opportunity to speak with qualified therapists about prolonged feelings of anxiety, depression, self-loathing, sadness or anger relating to your ileostomy or internal pouch or being told you need this type of surgery.
If you, or someone you know, needs help, visit www.iasupport.org/lets-talk
By adopting the practices outlined in this article, employers can create a more inclusive and supportive workplace for employees with stomas or internal pouches, reducing anxiety and improving overall job satisfaction.
If you’re looking for a talented professional to join your team, or a new opportunity, contact your nearest Reed office.
