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Crohn’s and Colitis Awareness Week

Volume 742: debated on Tuesday 12 December 2023

Motion made, and Question proposed, That this House do now adjourn.—(Mike Wood.)

I am incredibly grateful for the opportunity to hold this debate and for the flexibility shown by the Speaker’s Office in moving it when I was ill last week.

Last week was Crohn’s and Colitis Awareness Week, an opportunity to break the silence on inflammatory bowel disease and highlight the impact of these terrible conditions on people’s lives. I want to thank in particular: Crohn’s and Colitis UK, which has given us a huge amount of support; the hon. Member—my hon. Friend I would like to call her—for Chesham and Amersham (Sarah Green), who with me jointly recently reconvened the all-party parliamentary group on Crohn’s and colitis; and Alyson in my office, who supported me in writing today’s speech.

Over 500,000 people in the UK—one in every 123 people—live with Crohn’s disease or ulcerative colitis. These are debilitating, lifelong conditions that develop when the immune system attacks the gut. Tragically, there is currently no cure. Symptoms include urgent and frequent diarrhoea, rectal bleeding, pain, profound fatigue, anaemia, and inflammation of the joints, skin, liver and eyes. These conditions are widely misunderstood, with its invisible and stigmatised symptoms often leading to isolation, a lack of support and poor mental health. That is why this Crohn’s and Colitis Awareness Week we wanted to break the silence on inflammatory bowel disease, raising greater awareness of the conditions and helping those many people—many of them our constituents —living with them to speak more openly about the impact on their lives.

I commend the hon. Lady. I was looking forward to her Adjournment debate last week. It is good to see her back in health and strength. Incontinence is a common symptom of Crohn’s and colitis, experienced by as many as three in four people with Crohn’s or colitis. Understandably, incontinence or the fear of experiencing incontinence can cause anxiety about leaving home, which can seriously affect work and social life. Does she agree that more work must be done with the Department for Work and Pensions to train personal independence payment assessors on the impacts of Crohn’s and colitis, to ensure that those suffering have the best possible chance of getting the benefits that they are entitled to?

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.

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?

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.

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?

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.

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?

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.

Let me start by congratulating the hon. Member for Livingston (Hannah Bardell) on securing this debate on this important issue. She is a tireless campaigner for those living with bowel conditions, particularly Crohn’s and colitis, and she has spoken movingly this evening about her own family’s experience of the condition. I also pay tribute to the hon. Members for Chesham and Amersham (Sarah Green), for Strangford (Jim Shannon), for Upper Bann (Carla Lockhart) and for East Renfrewshire (Kirsten Oswald) for their contributions. I will try to address as many of the points that have been made in the time allowed to me.

It is important that we all do everything we can to break the stigma and ensure that sufferers’ voices are heard. The hon. Member for Livingston has already done invaluable work in helping to re-establish the all-party group on Crohn’s and colitis. I also wish to pay tribute to the charities that support half a million people living with IBD across the UK all year round—Crohn’s and Colitis UK, the Crohn’s in Childhood Research Association, and the Crohn’s and Colitis Foundation, to name just a few. On this issue, as with so many others, it is vital that we do everything we can to break down the barriers to those affected from accessing healthcare. As Crohn’s and Colitis UK has said, “it takes guts” to come forward with your story, and I salute its “cut the crap” campaign. I look forward to working with the hon. Lady as we find solutions to improve the lives of people living with this disease. As she has rightly said, living with Crohn’s and colitis can be a daily struggle. Symptoms of the disease can be embarrassing, leading to people feeling isolated and not reaching out for the support they need.

I will focus briefly on three things my Department and NHS England are doing to help sufferers: raising professional awareness, improving diagnosis and research. I begin with the crucial point about raising awareness, as getting people diagnosed as early as possible is key.

There are two kinds of awareness. First, as the hon. Member for Chesham and Amersham mentioned, there is raising awareness among the public. Stigma is the invisible wall preventing people from seeking the help they need and campaigners are central to smashing that stigma, because of their reach into communities across the country. Campaigners, like the hon. Member for Livingston’s constituent Steven Sharp, have done much to raise awareness and break down that invisible wall. They encourage people to get to their GPs and ask the right questions. I am keen for us to be backing people like Steven every step of the way.

By helping GPs to recognise the symptoms of Crohn’s and colitis through NHS England’s “Getting it right the first time” gastroenterology programme, conditions can be diagnosed as quickly as possible. The programme supports primary care services, driving appropriate referrals and managing inflammatory bowel disease in the community, and is estimated to reduce emergency admissions by more than 6,500 a year. It has been commended by the King’s Fund, which is not always in the habit of showering praise on the Government.

It is also right that doctors should be properly trained to treat the symptoms of Crohn’s and colitis as they appear. In the past five years, the National Institute for Health and Care Excellence has produced a range of guidance to ensure that the care doctors provide for Crohn’s is based on the best possible evidence.

Early diagnosis can make a clear difference to people’s quality of life. We are working hard to improve early diagnosis rates through the “Getting it right the first time” programme and through measures that include more six and seven-day services, extended hours, reviewed and expanded endoscopy capacity, and improved patient flow. NHS England is working closely with front-line clinical experts, patient representatives and leading charities to develop evidence-based tools that improve care. The work includes provision of a right care scenario on inflammatory bowel disease. That will set out our expectations of high-quality, joined-up care at every point of the patient journey, from diagnosis to treatment. Officials assure me this is being finalised and will be delivered in the coming year.

NHS England’s national bladder and bowel health project is delivering better care to people with inflammatory bowel disease, with a focus on developing clinical pathways. Making a diagnosis of Crohn’s and colitis can be difficult and frustrating for patients as the condition can be confused with irritable bowel syndrome, so I am pleased that NICE has recently made faecal calprotectin tests available on the NHS as a non-invasive, inexpensive method for assessing patients before invasive procedures are required.

As the Minister responsible for life sciences, I am passionate that we can do everything we can to accomplish better patient outcomes through investing more in research. That is key to gaining a better understanding of the causes of inflammatory bowel disease, leading to better diagnosis, treatment and outcomes.

I thank the Minister for his comprehensive response, by which I am sure hon. Members are encouraged. However, the hon. Member for Livingston and I asked specifically about PIPs, which we are very concerned about. I know that is not the Minister’s responsibility, but will he undertake to speak to the relevant Minister to ensure there are movements to help and improve that system?

I am happy to give the hon. Member that undertaking. As he rightly acknowledges, I am not a Department for Work and Pensions Minister. I do not want to tread on their toes, but I will be relaying the clear views expressed during the debate to DWP Ministers because it is important that we get the benefit system right to support all people living with conditions such as these.

I will, if I may, return to the research point. We are investing more than £1 billion a year in health research with the National Institute of Health and Care Research. We are funding 60 projects on Crohn’s and colitis research, backed by more than £33 million over the past five years. I appeal to every scientist who may be interested in research in this area to keep applying for grants through the NIHR. I will leave no stone unturned in finding out what more can be done to address the needs of people affected by these conditions. I look forward to working with the hon. Lady to create the kind of care that people deserve. Whatever our political differences, I am sure that we will agree that half a million people living with inflammatory bowel disease are entitled to the highest possible standards of care and support.

I will continue engaging with the hon. Lady and with NHS England to make sure that the “Getting it right first time” programme is delivering results for patients on the ground. I began this speech by talking about the invisible wall preventing people from accessing the healthcare that they need. Let us tear down that wall together.

Question put and agreed to.

House adjourned.