Crohn’s and Colitis Awareness Week

Kirsten Oswald Excerpts

Tuesday 12th December 2023 Commons Chamber

[Hannah Bardell]

I congratulate the hon. Lady on the work that has been done in Upper Bann, and perhaps there are lessons that can be learned by all Governments across the UK. Incontinence can cause considerable anxiety. I often talk to my brother about what is worse now. Although a flare up can be seriously debilitating, the day-to-day anxiety never goes away and is always with those who suffer.

What is more, some Crohn’s and colitis sufferers have stoma bags, meaning that not only do they need to find a toilet, but they need to find one that has enough space for them to change and dispose of equipment comfortably, hygienically and in privacy. There was recently an excellent event in Parliament for International Men’s Day that talked about the need for sanitary bins in men’s toilets, which is incredibly important. Men often suffer from incontinence, and they certainly suffer from Crohn’s and colitis, so making sure that all toilets have such safe and sanitary facilities is crucial. I am not sure whether that would require an Act of Parliament, but it strikes me that it would have support across the House, because the fear of incontinence or being unable to locate a toilet can lead to a breakdown in mental wellbeing and social isolation through people choosing simply not to leave their home. We have all been there. We have all had a sickness, a bug or an upset tummy and either nearly not made it or not made it. Imagine that being your life every single day.

Many living with Crohn’s and colitis will understand, and I hope they will hear, these calls. A key thing we have heard about time and again is the social security system, because less than 3% of people living with Crohn’s and colitis are in receipt of personal independence payment. Four in five are denied the support they need. Words like “battling” and “fighting” are often used to describe the experience of those applying for PIP. I recently spoke to someone who talked about how degrading they felt the system is, and that was somebody who is chronically ill and often cannot leave the house. For them to be scared of going through a system that is supposed to be a safety net is utterly appalling, and I hope the Minister will hear that and talk more about how the social security system can support people with Crohn’s and colitis.

The current benefit system defines disability as a permanent and substantial impairment, or a long-term health condition that is likely to degenerate. Those I have given examples from, those we have taken evidence from and those who will be watching at home tonight—no one can tell me that their condition is not long term. There is little recognition of fluctuating health conditions, and fluctuating health conditions are not just Crohn’s and colitis. There are many other conditions, so we have to have a system that is designed to support all those people.

[Kirsten Oswald (East Renfrewshire) (SNP)]

My hon. Friend is making a powerful speech, and I hope that the Minister hears the points she is making. One thing that constituents consistently raise with me about Crohn’s and colitis is the impact of benefit assessors’ lack of awareness of the impact and fluctuating nature of the conditions, which my hon .Friend has been describing, and the need to end informal assessment in the personal independence payment process. Does she share their concerns about those points?

[Hannah Bardell]

I absolutely do. It is fortuitous that my hon. Friend raises that issue, because the statistics tell us that only one in two people score points under the toileting needs and continence descriptor, despite the severity of the symptom on everyday life. The fact that three in four people with Crohn’s and colitis will experience it just shows how profound the issue is.

I wish to highlight that the Scottish Government are reforming flexible disability assessment for fluctuating diseases. That is good news for people in Scotland, but what about people across the rest of the UK? The Scottish Government are consulting people with lived experiences on the mobility component of their adult disability payment. That includes researching the impact of moving around, planning and following journeys for those with fluctuating conditions. The adult disability payment differs from PIP, as it intends to get decisions right first time by trusting what people tell Social Security Scotland. Time and again, I have heard from people who have been through the assessment process for PIP and have been undermined and scared. I know people who have just not gone there, including some constituents who have come to see me; they do not want to go through the process, because they are so scared of it. We must move away from that. Treating people with dignity, fairness and respect is at the heart of delivering the adult disability payment.

I have highlighted just some of the impact that Crohn’s and colitis has on people’s lives. It is vital that we invest in developing a national primary care diagnostic pathway for lower gastrointestinal conditions, as my hon. Friend suggested, destigmatise IBD symptoms and create a benefits system that supports people with all types of disabilities. Just as the Crohn’s and Colitis UK campaign says, it is time to cut the crap and give greater awareness about IBD and those who suffer from this terrible life-limiting disease. We have an opportunity to do something really good: to give those who suffer from these terrible diseases an opportunity to take their full role in their communities and do jobs that they may otherwise be unable to do if they do not get that diagnosis and that support as early as possible.

I hope the Minister has heard what we have said, and heard the experiences of our constituents and those close to us. I look forward to his contribution.