Crohn’s and Colitis Awareness Week

Carla Lockhart Excerpts

Tuesday 12th December 2023 Commons Chamber

[Hannah Bardell]

The hon. Lady is absolutely right that we need greater awareness. People need to live without that stigma, and they must not be scared to talk about their poo. They need to be able to go to their doctor and discuss this openly, and their doctors need to be able to offer the right care.

Only one in four people are diagnosed before they are 30, thus affecting the most productive years of their lives. Crohn’s and colitis are complicated diseases that follow a relapsing and remitting disease course. We therefore need a benefits and social security system that supports people with these conditions. As the hon. Lady has said, it is also crucial that we raise awareness. People are waiting far too long for a diagnosis of Crohn’s or colitis. Even before the pandemic, one in four people waited a year to be diagnosed, with nearly half ending up in accident and emergency at least once before their diagnosis.

Delays to diagnosis affect people’s ability to continue education and work. They also narrow the treatment options while increasing the risk of being hospitalised. We do not want anybody to feel that they are a burden on the NHS, but there is a greater burden on the NHS when people are diagnosed later and are unable to access that care. Research found that only one in two people had ever heard of these conditions and that even fewer could name the symptoms. To make matters worse, people are not facing up to this, not understanding it, and putting it down to other things. You could say that it is time to talk more crap than we already do. If sufferers struggle to discuss incontinence with health professionals, it can have a profound impact, but these discussions are vital to ensure that people with Crohn’s and colitis receive the support and accommodations they need.

I would like to highlight the work of the SNP-led Scottish Government, who are committed to ensuring that those living with Crohn’s and colitis can access the best possible care and support, and access health services that are safe and effective and that put people at the centre of their care. For example, in March this year the Scottish Government launched an awareness campaign to help increase awareness of Crohn’s and colitis symptoms and to signpost reliable information so that people would feel empowered to seek help from a medical professional when needed. I would be delighted to hear the Minister say that the UK Government will do the same and that they will work across the UK and internationally with those who are leading in the field of research.

Bowel conditions are notoriously difficult to diagnose, so we must remind people that the symptoms of some of these conditions, including IBS, coeliac disease and bowel cancer, can be similar to those of Crohn’s or colitis. It is crucial that those with Crohn’s or colitis have these conversations and get a diagnosis as early as possible. If left untreated and poorly managed, these conditions can cause serious complications that require emergency medical or surgical intervention.

At a recent meeting of the all-party parliamentary group on Crohn’s and colitis, we heard from a sufferer who had had the most horrific experience during covid. She was taken by ambulance after terrible weight loss, and hearing her experience, particularly during covid, brought home to us how awful this can be and how difficult it is for young people, in particular, to face up to something that will be lifelong and debilitating.

Inflammatory bowel disease care is often overlooked and under-resourced. Current resource planning is based on outdated data on the number of people living with these conditions, which we know is twice as many as was previously estimated. One long-serving IBD clinical nurse specialist recently told us how, 18 years ago, her service was supporting 250 patients living with Crohn’s and colitis and is now supporting more than 7,000. That kind of increase is not realistic for our healthcare staff to deal with. Consequently, there is a significant variation in quality of care across the UK. No IBD service currently meets the IBD standards, so we need to work together to improve that.

The Scottish Government will continue to improve services for people with the conditions through modernising the patient pathways programme. It has a specific workstream that is continuing to promote improvements in inflammatory bowel disease care for patients across Scotland, in partnership with the third sector and people with lived experience. Additionally, the Scottish Government are funding gastroenterology specialty groups that lead on research into Crohn’s disease and ulcerative colitis, with a focus on a range of areas, including early diagnosis of these conditions.

We look forward to seeing the results of IBD UK’s benchmarking surveys, which are currently being undertaken. There will be data from over 15,000 patients and 63% of IBD services, and I hope the Government will take that into consideration and give it their very close attention.

As we have discussed, Crohn’s and colitis not only affect the gut; they can affect almost every part of the body and every aspect of life, from digestion, eyes and joints to energy. However, many people tell us that the hardest part of living with these conditions is the prejudice and discrimination that come from living with a hidden disability. The awareness cards that are now available from Crohn’s and Colitis UK and other charities do help, but we need awareness not only from people who suffer from Crohn’s and colitis, but from the public at large. When somebody who does not appear to have a physical impairment uses a disabled toilet, it does not mean that they do not need to use that toilet. Three in four people will experience bowel incontinence, and therefore quick access to a suitable toilet facility is crucial, either to prevent or to act should an accident occur.

[Carla Lockhart (Upper Bann) (DUP)]

The hon. Lady is making a powerful contribution. I believe the Government should undertake work on accessible toilets to help people who have Crohn’s and colitis. In my Upper Bann constituency, we have rolled out a fleet of accessible toilets. Does she agree that this should be mirrored throughout the United Kingdom, and that there should be more focus on the availability of Radar keys for disabled toilets?

[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.