Crohn’s and Colitis Awareness Week

Jim Shannon Excerpts

Tuesday 12th December 2023 Commons Chamber

[Hannah Bardell (Livingston) (SNP)]

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.

[Jim Shannon (Strangford) (DUP)]

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?

[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.

--- Later in debate ---

[The Minister for Health and Secondary Care (Andrew Stephenson)]

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.

[Jim Shannon]

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?

[Andrew Stephenson]

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.