Crohn’s and Colitis Awareness Week

Sarah Green Excerpts

Tuesday 12th December 2023 Commons Chamber

[Hannah Bardell]

It almost seems as if the hon. Gentleman has read the next bit of my speech, because I was about to come to the point he has just made—and it is an extremely important and salient point. We do need to ensure that PIP assessors, and the whole framework, can take into consideration those with relapsing and remitting conditions such as Crohn’s and colitis.

I now want to share the experiences of some of those people with the House, because one of them is my brother. When he was diagnosed with ulcerative colitis just over nine years ago, he was in his late 20s and a new dad to a premature little girl. While we were cooing, and worrying a little, about this new bundle of joy—who is now a strapping nine-year-old—my brother was struggling, and had been for some time. I think that, in truth, he was terrified about how fatal the diagnosis might be. It was not until much later that it dawned on us all just what he had been through. When his diagnosis finally came, it was truly devastating. His life and that of our family were, for a period, turned upside down. An active and fit football lover, a new dad and an outgoing and often, frankly, a bit too cheeky young man was stopped in his tracks.

As a frontline police officer with big ambitions and talent, my brother had to adjust to a very different life, existence and career path. The pain, the fatigue and the various other symptoms that he, like many others, had experienced suddenly had a name. Apart from the initial period when he was off work to recover and adapt, his condition meant that, for instance, our annual camping holiday in the west highlands was suddenly in jeopardy. A four-hour drive when it could not be predicted whether toilets would be open or available was suddenly something that was potentially out of reach. My brother, however, being the resourceful problem-solver that he is, traded his car for a pick-up truck and popped a portable loo in the back, which meant that while he adjusted to his anxiety about being able to find a toilet when travelling, such things could be managed. I do not think he ever used the portable loo, but it was there just in case.

I believe that my brother would now count himself one of the lucky ones, and that, in fact, is just the point. For those who suffer from any kind of inflammatory bowel disease—and I acknowledge that people with endometriosis or conditions like cancer suffer very similar challenges—finding a loo that is working, stocked and clean is a perennial problem. Perhaps the Minister would like to meet me some time to discuss how we can develop better facilities—perhaps some kind of interactive map, in an app, of “loos that will do”.

My constituent Steven Sharp, to whom I pay tribute, is a brilliant young man from Fauldhouse. He is a Crohn’s sufferer, and he has raised thousands of pounds for charity over the years by, for instance, doing a bungee jump. He has often spoken to me about the joint pain, the fatigue and the unpredictability of the disease and its impact on his life. That unpredictability is one of the major challenges; the symptoms can change and be different every single day. Steven also lives with a stoma. He and I recently met the Prime Minister, and I have to say that the Prime Minister was incredibly supportive and kind to him. I hope that that kindness will be extended to provisions to ensure that those living with Crohn’s and colitis can obtain the support they need.

My friend Rachel Agnew, who I hope is watching the debate and with whom I spent time this summer, also talked to me about her many years of illness with Crohn’s disease and a possible misdiagnosis. Having had many major operations, she now has “Stan the stoma”, who can sometimes be cantankerous but has ultimately saved her life. Rachel recently had to give up a job that she loved, and is now having to navigate the complexities of the benefit system while having a relapsing and remitting disease.

Research commissioned by Crohn’s and Colitis UK has revealed that the scale of Crohn’s and colitis has been vastly underestimated, and that twice as many people as previously thought are living with the condition. In particular, as we know from recent debates and briefings, young children are being diagnosed earlier and earlier in their lives. I think that we need to pause and consider why that is happening. What are the environmental impacts? What are the impacts of over-processed food? I have no doubt that those elements play a part, and we need to fund research to enable us to get to the bottom of that.

[Sarah Green (Chesham and Amersham) (LD)]

I thank the hon. Lady for securing today’s Adjournment debate to raise awareness of Crohn’s and colitis. Symptoms such as abdominal pain, diarrhoea and fatigue are too often dismissed, especially when they come and go. A poll by Crohn’s and Colitis UK found that more than one in 10 people would put off speaking to a healthcare professional if they had diarrhoea with blood or mucus and stomach pain because they found it too embarrassing to speak to a healthcare professional about their symptoms. Does the hon. Lady agree that a public awareness campaign on lower gastrointestinal symptoms is needed to help people access reliable healthcare and advice and to take control of their health?

[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.