My stoma bag means I have to work part-time - so why can't I get benefits?
Holly April, 29, had a stoma bag fitted in 2021 after she needed emergency surgery when her ulcerative colitis caused her bowel to perforate. April has been documenting her life with the debilitating condition on social media under the name 'Stoma Babe'
April is worried about MP Liz Kendall's 'Back to Work' plan to get chronically ill people into employment. Disability charities have welcomed the new Government’s “positive vision” but urged it to provide reassurance to disabled people who are unable to work “that they won’t be forced into unsuitable jobs, or have vital financial support taken away”.
After undergoing surgery in 2021, she has had to wear a stoma bag, which is a pouch that is attached to the surface of the person's abdomen to divert waste that would have otherwise gone through her digestive tract.
I thought that when Labour came into power, people like me would be treated more fairly around disability benefits - I feel like it's going to get worse. They seem hell bent on “trying to get 80% of people into work” approach. Well, there's never been 80% of people in work. I don't know where they're getting this from. How on earth are they making that possible? God knows.
I work part-time because my employers made the role part-time for me, not because those hours were set up that way to begin with. I go on LinkedIn to try to look around, but it feels like there are no part-time jobs, and most people with disabilities can't work full-time. So what jobs are there?
I struggle to work full-time because I suffer from very, very bad fatigue and have to sleep a lot. I'm also up at night dealing with my stoma bag. It has a massive impact on my life, but it's one that the DWP doesn't have on their criteria that would qualify me for Personal Independence Payments (PIP). It feels so old-fashioned. Most of their criteria is based upon physical activities, such as how often can you walk out fast? How often do you go out? How can you drive? All this kind of stuff.
One of the major changes I understand that the government could be looking to make is to turn some of the monthly Personal Independence Payments into vouchers.
Just saying that creates so much anxiety and worry for people within the disabled community; those who receive PIP as a lifeline; and for those who get it because they have additional needs. They could be working, but they might need the additional money for things like transport or medication. There are so many things that PIP can cover.
But there it is. I live with ulcerative colitis and also with a stoma bag - and yet I don't qualify for PIP.
One of the things that has been a source of contention for me with PIP is that a lot of invisible illnesses are not really taken into account, even though they impact people's daily lives. We know there are some illnesses where you can be completely fine one day and able to undertake tasks, and then a couple of days later, you can be completely incapacitated with ill health.
When you apply for PIP, they ask questions such as: How often do you go to the toilet? Do you need assistance going to the toilet? And PIP is looking to remove that altogether because, for some reason, they didn't think that having a bladder or bowel condition is a disability. I find it disgusting.
Sometimes it feels like I spend all day every day in the toilet - so that is something that should definitely contribute towards someone being awarded PIP.
Being included in the criteria for PIP would make such a massive difference to my life - and many others like me. When people are really sick - they shouldn't feel they have to carry on working i order to survive.
I ended up being hospitalised because I couldn't take a day off. I worked myself into the ground, basically, and ended up needing massive surgery. If I had been able to have some time away to recuperate, care for myself and go to the doctors and get checked out, maybe that might not happen to me.
I've previously applied (and failed) for PIP twice. What many people advise - especially with hidden disabilities - is to keep pushing and keep appealing. But when you live with a chronic illness and you're not well, who has the strength and energy to keep filling out paperwork and appealing new things? Because I don't. It's exhausting.
