Crohn’s and Colitis Treatment: England
(8 years, 2 months ago)
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Mrs Anne Main (St Albans) (Con)
I beg to move,
That this House has considered the treatment of people with Crohn’s and colitis in England.
It is a delight to serve under your chairmanship, Sir Roger. I am aware that there are different treatments in Scotland and Wales, but I want to focus on Crohn’s disease and colitis in England.
I am pleased to be leading this very important debate on Crohn’s and colitis, which affect more than 250,000 people in England and 300,000 in the UK. I have been working with the charity Crohn’s and Colitis UK, some of whose members are here today. They would be delighted to meet any hon. Members participating in the debate because they would like to get some publicity for that particularly wonderful charity, which is based in my constituency in St Albans. It does a tremendous amount of work for those who live with these challenging conditions.
I am also pleased to say that I have been reading the feedback from the digital debate on Facebook. That is a new concept, and I am very pleased that the House is offering it. I wish to express my thanks to Crohn’s and Colitis UK and the Westminster Hall digital debate team for arranging the online forum. We received 1,068 comments on the forum, and the posts were shared 258 times and liked 734 times, so it has been highly informative to this debate.
Crohn’s disease and ulcerative colitis are the two main forms of inflammatory bowel disease. Both are chronic lifelong conditions that cause inflammation of the digestive system. Ulcerative colitis affects only the large intestine, whereas Crohn’s disease affects the whole digestive system. According to the National Institute for Health and Care Excellence, it is estimated that in the UK 115,000 people have Crohn’s disease and 146,000 have ulcerative colitis. That is an estimated 460 people per constituency. I keep using the word “estimated” because there is no national database. At my last meeting with the charity, it stressed that it would very much like there to be a national database and better record keeping on those people who are presenting with the disease.
The most common symptoms of inflammatory bowel disease include diarrhoea, cramping pains in the abdomen, tiredness and fatigue, and loss of appetite and loss of weight. The exact causes of Crohn’s disease and ulcerative colitis are unclear, but there is evidence that IBD can cluster in families, and having an affected family member is a risk factor. IBD is a lifelong condition, but people can get it at any age. It most commonly first presents in the teenage years and early twenties—the mean age of diagnosis is 29.5 years. About 18,000 new cases of IBD are diagnosed each year, and that number is increasing. This is not a trivial complaint. IBD can be painful, disrupt normal activities and reduce quality of life, particularly during periods of active disease. These conditions can affect the individual’s ability to work, learn, socialise and form and maintain relationships.
We British are famous for our lavatorial sense of humour, and just saying the word “bottom” or “bum” is usually enough to bring on a fit of the giggles, so it is no surprise that we, the British public, are not good at discussing bowel problems or even seeking help for them—no wonder IBD has been described as a hidden disease. That reluctance can lead to sufferers feeling isolated and stigmatised.
According to Crohn’s and Colitis UK, the causes of IBD are a combination of factors. Those include the genes that a person has inherited, together with an abnormal reaction of the immune system to certain bacteria in the intestines, probably triggered by something in the environment. Viruses, bacteria, diet, smoking and stress have all been suggested as environmental triggers, but there is no definitive evidence that any one of those is the cause of IBD. That is why, as I know the charity would also say, we need more research and more evidence. We need IBD to have a higher profile, as it affects so many of our constituents.
There is currently no cure for Crohn’s or colitis. The main aim of treating IBDs is either to heal the inflammation and so reduce symptoms during a flare-up or to prevent flare-ups from happening. NICE has recommended a number of different medicines for IBD, which can be taken in different ways by patients, but if individuals do not respond to medication, surgery is considered as an option—20% of people with ulcerative colitis and about 60% to 70% of people with Crohn’s disease go on to have surgery. A large number of our constituents will be forced to have surgery as a result of the disease. The lifetime medical costs for IBD are comparable to those for other major diseases such as diabetes and cancer. It is estimated to cost £900 million per annum, UK-wide. Crohn’s and Colitis UK currently funds about £500,000-worth of research every year into the causes of IBD, and treatments and care for people with IBD. Although that sounds like a large amount of money, in terms of the number of sufferers it is not a large amount.
There is a new research study under way from the National Institute for Health Research, called the IBD BioResource. The aim is to accelerate research into Crohn’s disease and ulcerative colitis and build on recent major advances in the understanding of the genetic basis of these conditions. The IBD BioResource is being launched for roll-out nationwide through 2016. I ask my hon. Friend the Minister how much support the Government are giving to the IBD BioResource study.
Crohn’s and Colitis UK says that there is a low level of awareness of IBD among the public, policy makers and even clinicians. It says:
“Public awareness of IBD is lower than for Parkinson’s and MS”—
multiple sclerosis—
“respectively, despite more people being affected by IBD than both diseases combined.”
Most of us will be very familiar with those two diseases.
At this point, I want to include some of the comments from the digital debate on Facebook. One contributor said:
“I’ve had Crohn’s for 18 years. For me it’s pain, fatigue and always having to explain to people what’s wrong with me and why I can’t come to work or do things.”
Another referred to:
“The Stigma of having a bowel disease. People not believing you and belittling how you feel because they can’t see it.”
Another said that we need:
“To raise more awareness of the illness! Make people more aware of what we go through on a day to day basis!”
Another talked about:
“Having to try, and try, and TRY to make people realise that it’s a disability and that just because you ‘don’t look ill’ (in a wheelchair) you still have issues that they will never understand.”
Many made the point that the illness controls and disrupts their lives to such an extent that they are in fact disabled by it. It is a hidden disability, and many call for it to be recognised as a disability. Therefore my question for the Minister is this: what are the Government doing to increase awareness of inflammatory bowel disease, and what are they doing to measure accurately the number of people living with IBD in England?
The charity tells me that early diagnosis of Crohn’s and colitis can prevent emergency hospital admissions, which have a cost to the NHS, and can help to avoid clinical complications. Unfortunately, in a substantial number of cases that is simply not happening. Studies have shown that 35% of people with Crohn’s and 16% of people with colitis had three or more emergency admissions before they received their diagnosis.
In the digital debate on Facebook, a sufferer said:
“I was treated for 6 months by my GP for food poisoning and/or anorexia before eventually ending up hospitalised as an emergency. The hospital did biopsies that day and confirmed Crohn’s. My Crohn’s turned out to be particularly aggressive and unresponsive to treatment and numerous surgeries.”
Another said:
“GPs need to be more up to date with IBD and stop saying it’s just a virus or IBS”—
irritable bowel syndrome. They continued:
“It took quite a few years of pain and complaining before I was diagnosed with Ulcerative Colitis.”
There is clear guidance from NICE on referral. The NICE quality standard for IBD states that people who have been experiencing abdominal pain or discomfort, bloating or a change in bowel habits, such as diarrhoea, with or without rectal bleeding, for at least six weeks should be suspected of having IBD. However, the feedback is clear that for many that is currently not happening and the guidance is not being followed.
NICE recommended faecal calprotectin testing as an option to help doctors to distinguish between inflammatory bowel diseases, such as Crohn’s and colitis, and non-inflammatory bowel diseases, such as IBS. That testing should enable quicker identification of suspected IBD and referral to a specialist, and reduce the number of unnecessary endoscopies carried out. Therefore more effective use of faecal calprotectin testing in primary care should enable quicker and more economical diagnosis of IBD patients, ensuring better and more efficient care in England.
What steps will the Minister take to improve the identification of suspected IBD? What are the Government doing to increase awareness of IBD in general practice among GPs? What steps will she take to improve the rate of referral of people with suspected IBD from primary care to the experts in secondary care? Will the Department undertake an evaluation of the uptake of faecal calprotectin testing by clinical commissioning groups, which NICE recommends, and the time taken by labs to process the results?
The IBD standards have been widely recognised throughout the IBD community, and later rounds of the IBD audit have benchmarked IBD services directly against them, but there is still a lot to do. Some 14% of services are still unable to provide people with Crohn’s or colitis with access to an IBD specialist nurse. Many of us would think of having access to a Parkinson’s specialist nurse, but IBD specialist nurses are few and far between, and many that have them struggle to maintain that vital service. Nearly one in four—23%—of all services have no access to specialist nutritional support despite the high level of malnutrition experienced by people suffering with IBD. Only 12% of services have a clear process to enable people with IBD to see a psychologist or a counsellor with a particular knowledge of IBD, and IBD has been described on many occasions as being a traumatising disease that leaves many people feeling isolated and unable to discuss with anyone—sometimes even their partners and closest friends—the reasons why they are often ill.
Sufferers complained online of a postcode lottery with IBD nurses. The lack of nurses was cited by many, who also said that GPs needed more training to identify people with Crohn’s and to assist in providing faster referrals or appointments when treatments need adjusting. Some sufferers found that their GP even seemed reluctant to make those referrals. Many sufferers said that employers need to have a greater awareness of the impact of IBD on their employees, especially given that flare-ups can occur at any time.
What is the Department doing to ensure the implementation of the IBD standards in England, and can the Minister give assurances to those living with IBD that they will not be forgotten on a strategic level by the NHS? What action is the Department taking to ensure that the NICE quality standard for IBD disease is being implemented across England? For those living with IBD, debilitating symptoms such as diarrhoea can occur instantly and unpredictably. Crohn’s and Colitis UK has been championing quick access to suitable toilet facilities. I hope the Minister will encourage all local authorities to evaluate the public toilet provision in their locality.
Christina Rees (Neath) (Lab)
Increasing access to toilets away from home is of benefit to all groups in society but it is especially crucial for those living with Crohn’s and ulcerative colitis, who have concerns about not reaching a toilet in time. Does the hon. Lady believe that other nations in the UK can learn from Welsh Labour’s Public Health (Wales) Bill, which treats access to toilets as a public health issue?
Mrs Main
It certainly is a public health issue. In the first Parliament I was in, from 2005 to 2010, I was on the Select Committee on Communities and Local Government and we looked into the issue of toilet access. I do not think that much has improved since then and that was under a Labour Government. I am sorry to say that we have not made a lot of progress. At the time, ordinary businesses were showing and displaying signs reading, “We welcome people using our public facilities.” The evidence that came out of that Communities and Local Government Committee report was that toilet provision was not just needed for people with things such as Crohn’s and colitis—there was a vast spectrum of other conditions for which people would welcome toilet provision, but that is for another debate.
It is very obvious that more focus on the cure and cause of IBD is urgently needed. I hope the Minister will give sufferers of this debilitating disease a cause for hope and a better future. I look forward to her answers—I hope she can give them today—to a large number of the questions that I have raised on behalf of those who have responded to the online debate and on behalf of the charity Crohn’s and Colitis UK, which is doing such a lot of good work. Look for the purple badge.
Several hon. Members rose—
Sir Roger Gale (in the Chair)
Order. I think four Members wish to speak. I will not put a formal time limit on speeches but request that Members confine their remarks to about six minutes. If we are sensible, everybody should get a chance to speak.
Melanie Onn (Great Grimsby) (Lab)
It is a pleasure to serve under your chairmanship, Sir Roger. I congratulate the hon. Member for St Albans (Mrs Main) on securing this debate. It is most welcome, especially to those people who are suffering and feel that they have a forgotten illness. It is important to discuss this immune system-related condition and to remind those in the Government that IBD is not IBS. I previously submitted a written question to the Minister about some of the data on Crohn’s and colitis gastroenterology appointments and asked whether they were being cancelled or postponed by the provider. No data are collected on that and it seems that quite a lot of data are not collected on the illness. I welcome the hon. Lady’s comments on centralising data on sufferers. As a sufferer myself, I think it would be a particularly good idea.
The appointments issue was recognised by my local trust. First appointments after a referral by a GP were timely but subsequent appointments to consultants were frequently being rescheduled at short notice and people would not be able to see their consultant for a further six months. For IBD sufferers, the gaps between assessments and, for consultants, the gaps between monitoring, are increasingly problematic. Consultants cannot get the data they need to monitor sufferers properly.
Specialist IBD nurses are absolutely essential as a resource for between-appointment reassurance and advice for sufferers. The nurses cover not only IBD. Those at my local hospital, including Kay Foster, who has been particularly helpful to me, cover IBS and a whole range of bowel conditions. Her caseload is enormous but if someone rings her, she will always call back. If that service were available more widely, it would be greatly appreciated.
Funnily enough, I had an email from a constituent, who said that she has recently come out of hospital after being admitted with suspected inflammatory bowel disease after having a camera investigation. She was discharged from hospital after becoming very ill and having to be put on a drip because she was dehydrated and collapsed. She is now on a waiting list of about six weeks for a CT scan. At the moment, she is constantly having flare-ups as soon as she eats anything. She is losing a lot of weight and is not digesting anything. Her big concern is that she is malnourished, dehydrated, weak, exhausted, in pain and constantly having to use the toilet.
Melanie Onn
My constituent is suffering with daily anxiety attacks. She has three young children, and she feels as if she cannot be a proper parent because she is so poorly. She has already signed off sick and is unable to work. She asked me to intervene to try to move her appointment forward. Of course, I recognise that numerous people will, unfortunately, be in that situation.
In my previous role as an organiser for Unison, I met a carer for older people in a nursing home. She had two young children, too, and she was struck down by the illness particularly severely. Within a short period of time, she was taken down the route of capability by her employer. Fortunately, we were able to intervene because, as a long-term condition, it falls under the Equality Act 2010. We were able to assist, but all employers should be aware and make reasonable adjustments, as they are required, including to work patterns, which can assist in supporting people.
At the moment, treatment seems to be limited to preventive measures, but that is very much about people’s physical health. It is also about mental health, because stress can form part of the illness. Continued use of steroids is not a healthy way to live and can have negative long-term effects. Many people are desperate to get control of this disease, and investment in research to try to combat the illness cannot come soon enough.
Corri Wilson (Ayr, Carrick and Cumnock) (SNP)
I congratulate the hon. Member for St Albans (Mrs Main) on securing this important debate. Helping to increase the understanding and awareness of Crohn’s and colitis is of huge importance to the 300,000 people across the UK who suffer from one of those complex, lifelong and potentially life-threatening diseases. It is thought that as many as 26,000 people in Scotland have Crohn’s or colitis, a higher incidence rate than anywhere else in the UK.
Living with IBD can have a huge impact on every aspect of a person’s life. It has serious physical and mental health implications, as I found out when I met local representatives of Crohn’s and Colitis UK soon after I was elected. I was surprised to find out that there were hundreds of people living in my constituency of Ayr, Carrick and Cumnock who suffer from these hidden, often misunderstood and dreadful conditions. It is vital that we try and reach out to these people, who may feel isolated or be coping badly with their health.
Living with IBD can be a daily struggle. Some symptoms of the disease can be embarrassing, which can lead to people suffering, without receiving adequate support, or feeling isolated. As we have heard, among the most distressing symptoms of IBD are diarrhoea and a constant urge to have a bowel movement. This means that people with IBD need constant access to a toilet, due to the frequency and urgency of their bowel movements. That is why the availability of clean public toilets is so crucial for those with IBD.
Understandably, these symptoms are often accompanied by a continuous anxiety about the sudden need to go to the toilet but having little time to find one. Who here can imagine the nightmare of being constantly under threat of being incontinent in public? For many individuals, that anxiety can have a devastating impact on their ability to engage in activities outside the home, such as working, shopping or socialising.
I am trying to help my constituents by working with the local Crohn’s and Colitis UK group on a scheme that encourages shops, restaurants and other businesses to have an open-door policy for people with Crohn’s or colitis who carry the “Can’t Wait” card. Something as simple as a sticker in a premise’s windows will allow people with these conditions to know that they can use a toilet that in other circumstances may not be open to the public. We also need to challenge the public’s attitude about disability, which is probably down to the logos that are used, and show that those with disabilities are not always in wheelchairs.
One of the things that people in my constituency who have IBD do not have to worry about is paying for their prescriptions. One of the main reasons the Scottish Government scrapped prescription charges was the benefit to people with life-long conditions such as IBD. Research shows that as a result of an unfair, outdated and arbitrary system of exemptions, many people with long-term conditions in England are severely compromising their health because they are unable to afford prescription charges. Since such charging was scrapped in Scotland, those with conditions such as IBD who need medication on an ongoing basis throughout their lives to keep them well no longer have to face making an impossible decision between paying for essential medication or feeding their family, or paying their rent or heating their home. Effectively taxing someone for having IBD or any other long-term condition is unfair and fundamentally against the founding principles of the NHS. I am proud that in Scotland we took the decision to improve access to prescriptions for all.
Although much needs to be done to improve the treatment of people with Crohn’s and colitis, I ask the Government to recognise the benefits of scrapping prescription charges for people with long-term conditions, and I ask all Members of the House to work with their local Crohn’s and Colitis UK group to help to foster the kind of environment where people suffering from these incurable and relapsing chronic conditions can feel confident to leave their homes and take part in the everyday activities that most of us take for granted.
Chris Evans (Islwyn) (Lab/Co-op)
It is a pleasure to serve under your chairmanship today, Sir Roger.
I, too, congratulate the hon. Member for St Albans (Mrs Main) on her outstanding speech and on bringing this important topic to the fore. I am delighted that we have had so many contributors today. I remember that when I held a debate in 2012 on employment opportunities for those with Crohn’s and colitis, I was the only speaker who was responded to by the Minister. I am glad that this issue has moved up the agenda somewhat since then.
Those with Crohn’s and colitis are often mixed up with those with irritable bowel syndrome—in fact, I admit that when I first heard of Crohn’s and colitis, I thought they were the same thing. I did not realise how debilitating and disabling they were, and how many people suffered in silence, and I really believed that it was time to shine a light on those things.
A recent Crohn’s and Colitis UK survey of pre-employed young people with inflammatory bowel disease showed that the prospect of gaining their first job was regarded as a daunting challenge. Employability emerged as their overriding concern, and when they found themselves in work, they found that they were often too embarrassed or scared to tell their employers about their needs. When I secured that debate—four years ago, nearly—I said that all we were calling for from employers was some understanding and some respect. However, with the welfare reform changes that lay ahead, I was deeply concerned that that was not going to be the case. That is why I am disappointed that the report found that 69% of the young people interviewed felt that their IBD had prevented them not only from reaching their full educational potential, but from having any chance of employment, with over half ruling out some sort of career option.
Back in January 2014, I took on an intern for three months who has Crohn’s disease. She completed her internship and I was very impressed by her work. There was an opening in my office and I offered her a job as my parliamentary research assistant, and she has been with me ever since—although I will say that in some parts of this speech she has written “irritable bowel disease” rather than “inflammatory bowel disease”, even though she herself suffers from the condition, but I will forgive her that. I was keen to take part in the internship programme, as I valued the idea of giving a younger member of the public an incredible career experience, while also teaching politicians such as myself about inflammatory bowel disease—she has written “irritable bowel disease” again, Sir Roger.
In January 2015, I hosted the parliamentary launch of the Work Foundation’s report on IBD and employment, alongside Crohn’s and Colitis UK—I am delighted they are here today, as the hon. Member for St Albans mentioned. In the UK, at least 300,000 people, or one in 210 people, have Crohn’s disease or ulcerative colitis, which are both known as inflammatory bowel disease. That equates to roughly around 460 people in each parliamentary constituency across the UK. These are incurable and relapsing chronic long-term conditions. The symptoms can be present at any age, but most commonly in the teens and twenties.
People with IBD are high users of health services, with 50% of patients with Crohn’s disease requiring surgery during their lifetime. I know this first hand, as my parliamentary researcher, who has Crohn’s disease, as I have mentioned, has had four operations in the two years she has been working in my office. In saying that, I pay tribute to Laura for her bravery, because, for something as private and embarrassing as some of the symptoms she has suffered from, she has not been afraid to bring that to the fore. We need more people like her, not only in politics but throughout working life.
Medical treatment will often include corticosteroids and immunosuppressants, including the biological therapies that are the latest treatments offered for inflammatory bowel disease. These conditions can have a devastating and life-stopping impact on a person’s life, due to the unpredictable nature of flare-ups, together with sleep deprivation, pain and fatigue, and they can severely affect an individual’s self-esteem.
There appears to be a low level of awareness of inflammatory bowel disease among the public, policy makers and clinicians. Public awareness of IBD is lower than it is for Parkinson’s and multiple sclerosis, as the hon. Member for St Albans mentioned, despite more people being affected by IBD than by both these conditions combined. The lack of public awareness is exacerbated by the stigma attached to the symptoms of IBD and the fact that it is a hidden illness.
Four years ago, I called for some understanding from employers. With debates such as this and events we have had in Parliament, I hope that understanding can come to the fore. If there is a message that should emerge from today’s debate from sufferers of IBD such as my hon. Friend the Member for Great Grimsby (Melanie Onn) and my parliamentary researcher, it is that there is no point in hiding IBD away. If someone is suffering, they should ask their employer for help. Most people I meet—I was a trade union official—are understanding. I have tried to be an understanding employer myself. Once people overcome that barrier, they will find that they can have a working life that is fruitful and that can lead to some great opportunities.
I had wanted to say more, Sir Roger, but I understand that there is a time limit. However, I will say this to anybody who suffers from Crohn’s or colitis: please do not hide away. If you are suffering, then speak to your employer. Speak to your teacher. Tell them what you are suffering from and they will be understanding. I genuinely believe that Crohn’s and colitis is as much of a problem for this country as dementia, whereas it is not mentioned because it is embarrassing—it is not something that we talk about. Crohn’s should be pushed up the political agenda, and I hope that with today’s debate we will do that.
Dr Philippa Whitford (Central Ayrshire) (SNP)
It is an honour to serve under your chairmanship, Sir Roger.
I, too, pay tribute to the hon. Member for St Albans (Mrs Main) for securing this debate, because, as we have heard in some of the contributions, there is a lack of awareness of the difference between irritable bowel syndrome and inflammatory bowel disease. Having been a doctor myself for more than 30 years, and a general surgeon for 20 of those before specialising purely in breast cancer, I know well what the outcome can be for people with IBD.
As the hon. Lady said, the rate of surgery is such that between 50% and 70% of Crohn’s patients and almost a third of those with ulcerative colitis will end up having an operation. The conditions are not trivial or embarrassing; they are life-threatening. It is therefore absolutely important that we try to get the research funding so that we can understand the cause, because that then gives us a chance of finding the cure. As my hon. Friend the Member for Ayr, Carrick and Cumnock (Corri Wilson) mentioned, for some reason Scotland has a very high incidence of such conditions. Is that genetic, or is it environmental? Looking at what is going on in different parts of the UK may help us get a handle on what is going on. Those are the things that we need to look for in the long term.
Normally when we are in the Chamber talking about a disease, we are talking about access to medicines in the major sense of not being allowed a new drug that would make a difference. Unusually, that is not the case here. The anti-tumour necrosis factor drugs can make a huge difference and have been passed by all the nations of the UK, but there is an issue with patients getting all the medicines that they require. If patients are on biologics, they will not pay prescription charges, but most of them are on a panoply of drugs, and for those they do have to pay. England needs to consider that Wales, Northern Ireland and Scotland have got rid of prescription charges. That move was led by Wales in 2007.
Plenty of research shows that, in general, less than 10% of the population pays for prescriptions, with half as pre-payment and half as pay-as-you-go. However, whenever surveys are done of people with chronic diseases, we find that some 75% to 85% are paying. That is because many of those diseases do not hit people once they have conveniently retired and qualify for free prescriptions. We have talked about how Crohn’s may hit people in their teens and how ulcerative colitis may hit people in their 20s and 30s, and they will have those conditions for life. They will be on different medications: methotrexate, steroids, enemas—the whole works—and they will be paying £8 an item. We talk about pre-payment, but many of these people will be in poorer jobs, because there will be times when they are not so well and when they are in and out of work as they have a waxing and waning condition. Because of that, they have to try to work out whether it will benefit them to pay £100-odd to have a pre-payment certificate. Perhaps they have a good year, perhaps they do not.
What has been shown in all the research is that approximately 35% of people report having not picked up a prescription because of charges, and approximately 30% have done that repeatedly. With all conditions we know that if someone is not taking their medication, they will get worse, but that is particularly the case with Crohn’s and colitis, which have such complications as strictures and toxic megacolon.
Working in breast cancer, we talk about “the big C”, but when I was doing general and emergency surgery I used to think of Crohn’s as “the wee C”, because it affects virtually all of someone’s life. It is debilitating and will affect everything that they do. These people are in and out of hospital, developing strictures, perforations and ischemic bowels and undergoing ileostomies, reversals and so on. It goes on and on. The hon. Member for Islwyn (Chris Evans) mentioned his member of staff, and I suggest he proofreads his speeches. She may write them, but it is his job to check them. People with Crohn’s often end up in hospital having expensive and incredibly difficult surgery. To go back into the abdomen of someone who has Crohn’s is a surgical nightmare. I have been there with the sweat pouring off me, trying to do those operations. Using the anti-TNF drugs earlier and ensuring that patients take all the medication required will make a difference in reducing surgery and, in the end, that is more cost-effective.
The other thing is access to care and trying to make it easier for people to get on with normal life. Along with Crohn’s and Colitis UK, the Scottish Government funded a two-year pilot that was looking at allowing patients to be much more linked to the clinician using e-health technology. That was carried out in the highlands to look at people living in rural areas, and in Greater Glasgow and Clyde to look at people living in a large city. The pilot developed information and support for patients and redesigned the services around the patients. Using the technology, the patient has an app that gives them information. They can have a two-way conversation with a clinician and they can register their symptoms. The clinician has a dashboard on their patients, and they can see whether someone is getting worse. That allows them to say, “Increase that”, or “Decrease this.” It means that patients do not always have to go and sit in the hospital if they are trying to hold down a job. If someone lives in the highlands and has to travel four hours to get to Inverness, that is a major pain when they are trying to maintain a normal life.
A new strategy is being launched in Scotland in June, and its aim is to meet the UK national Crohn’s and colitis standards. It will be the first comprehensive integrated strategy in the United Kingdom. It will create a patient portal where people can access their clinic letters and blood results so that they learn that they can manage their own disease. When we talk about the five year forward vision, or the 2020 vision in Scotland, the aim is to enable and empower patients to manage their chronic diseases as far as possible.
The last thing that was mentioned by the hon. Member for Islwyn was changing attitudes in society. Not everyone with a condition is on crutches or in a wheelchair, and we need to get past the embarrassment of talking about bottoms or going to the toilet. We need to realise that these are serious conditions that are debilitating. We simply need to make access to toilets available for everyone, whether they are elderly, incontinent or have inflammatory bowel disease. It is about trying to get past that access just being for certain people, because it is important for a lot of people.
Andrew Gwynne (Denton and Reddish) (Lab)
It is a pleasure to serve under your chairmanship, Sir Roger. I, too, commend the hon. Member for St Albans (Mrs Main) not only on securing the debate and the eloquent way in which she opened it, but on the work she is doing to help raise awareness of Crohn’s and colitis. Although the debate is about the situation in England, we have had a valuable set of contributions from Members from Wales and Scotland. While it is right that the public health Minister is responsible for this policy area in England, there is a lot of experience and research that we should be sharing. We should also be sharing a lot more understanding of what each part of the NHS in each respective part of the United Kingdom is achieving in the work to try to tackle some of the issues.
I put on record my thanks to Crohn’s and Colitis UK for all its hard work in briefing Members of Parliament for this debate, and for all the work it has done since its inception in 1979. I will let you into a secret, Sir Roger. I am fairly new to the shadow public health role, although I have been on the shadow Health team for some time now. I must confess to not being entirely abreast of the issues facing IBD sufferers before looking at them for this debate. Frankly, what I found stunned me. More than 300,000 people in the UK suffer from Crohn’s or ulcerative colitis, and that equates to some 460 people in my constituency alone.
While that is a lot of people, IBD is not as prevalent as some of the more common long-term conditions. That means that research funding, as we have heard over the course of this debate, is thin on the ground, and there is not the same level of awareness in the general public at large. Put simply, it is not a glamorous cause. There are few outward signs of having the condition, but the effect on lifestyle is massive for the people concerned. Many of the problems that we discuss regularly in terms of cancer are just as pronounced when it comes to IBD, and not only include pain, fatigue, sleep deprivation and disruption to life in general, but also relate to awareness, diagnosis and psychological impact, and I want to touch on those things.
First, I want to address the problems of diagnosis. GPs need to be more aware of IBD. Every medical practitioner knows of instances of general abdominal pain and irregular bowel function being written off as IBS. As I have already said, I was not fully aware of the problem of misdiagnosis until I heard from Crohn’s and Colitis UK, so the matter does come down to awareness both among the general public and, importantly, among the medical community. Because the most pronounced symptoms of IBD are often the most embarrassing to discuss, the issue often gets swept under the carpet, even in the GP’s surgery.
Studies have shown that 35% of people with Crohn’s had three or more emergency admissions before they received a diagnosis. Frankly, that just is not good enough. I accept that some delays to diagnosis are inevitable, considering the nature of the disease, and clinical judgment should receive an appropriate degree of latitude, but we can and we must do much more.
There are some welcome signs. In 2013, NICE recommended faecal calprotectin testing as one option for doctors to help distinguish between IBS and IBD, which is welcome. There can be more effective use of that at primary care level, which would save not only money but would ensure better and more efficient care for patients: an undeniable win-win situation for all involved. How will the public health Minister improve the efficiency of the identification of suspected IBD? We also need to reduce the unnecessary use of endoscopies where less intrusive tests would do just fine.
I want to spend some time talking about the psychological impact, which Members have touched on today. Last year, the Opposition established the post of shadow Mental Health Minister, a job in which my hon. Friend the Member for Liverpool, Wavertree (Luciana Berger) is making a significant impact. Mental health is of paramount importance to the Labour party, and it is often the unseen damage that is most destructive. IBD symptoms, diagnostics and treatment can have a disastrous impact on a sufferer’s mental health. The uncertainty and sense of lost potential must be absolutely awful, and I cannot help but imagine how I would feel were one of my children told that they had IBD.
An audit in 2014 found that only 12% of services have a clear process to enable people suffering from IBD to see a psychologist or professional with knowledge of IBD. That figure may have improved—we might see that when the next audit is carried out—but however we look at it, it is not good enough. About 41% of IBD sufferers experience high levels of anxiety, and so of course we must do more, because many people living with IBD feel that simply having easier access to psychiatric services at critical points would help immensely. With the Government’s laudable commitment to ensuring parity of esteem, which we are fully behind, what is the Minister’s Department doing to make sure that people with IBD across England have the appropriate level of access to tailored psychological support with professionals who are familiar with the very specific issues they face?
I am pleased that hon. Members have mentioned the access to toilets strategy formed by my Labour colleagues in Wales. Obviously, an episode of incontinence in public is extremely embarrassing, and with incredibly poor access to public toilets being endemic across England, a person with IBD can feel anxious even being in an unfamiliar place. Many people with IBD have seen a devastating impact on their capacity to lead normal lives when they are away from home. I am therefore pleased that the Welsh Government have led by treating access to public toilets as a public health issue.
The Welsh Assembly is now considering the Public Health (Wales) Bill, which is close to the final stages of the legislative process. Some fairly simple steps can have a big impact on the ability of Crohn’s and colitis sufferers to lead normal lives when out and about. Councils, for example, could make better use of the toilets that are already in the community, whether in public buildings or private businesses. The Bill will place a duty on every council to publish a local toilet strategy. The Welsh Government are leading the way, and I hope the UK Government will follow suit. I appreciate that it might require intervention by the Minister’s colleagues in the Department for Communities and Local Government to halt some of the public toilet closures that we have seen in recent years, but will the Minister offer to discuss this not only with her colleagues in DCLG, but with my Welsh Labour colleague, Mark Drakeford? I think there is plenty of potential here.
My thanks go to all hon. Members for their contributions this afternoon. Some incredibly astute points have been made, and I hope the Minister goes away better informed, as I know I will, as a result of this debate. We owe it to those 300,000 people in the UK suffering from Crohn’s disease or colitis to come up with some better ideas in the coming months and years. This debate has given us a good starting point, such as the need for better public toilet access, and the need for more widespread use of less invasive diagnostic techniques. About 18,000 new cases of IBD are diagnosed every year, so this is not some fringe problem, but an issue facing people in every single community across the country. I look forward to hearing the public health Minister’s response.
The Parliamentary Under-Secretary of State for Health (Jane Ellison)
It is a pleasure to respond to this debate under your chairmanship, Sir Roger. We have had a good debate with many first-class contributions. I hope it demonstrates to those watching and those who participated in such great numbers in the Facebook debate that Parliament is taking this issue seriously, as we have filled the time available to us with various contributions. I hope to be able to respond to most of the points made. If not, as ever, I will try to respond post debate.
I congratulate my hon. Friend the Member for St Albans (Mrs Main) on securing the debate. It is always interesting for a Member of Parliament with a great charity in the constituency; the MP ends up becoming quite expert, and my hon. Friend has done an excellent charity proud this afternoon in raising the issues. Crohn’s and Colitis UK is the national charity campaigning on these issues. I pay tribute to its work as it campaigns tirelessly to raise the profile of Crohn’s and colitis and to provide support and advice to all those affected. My hon. Friend is a keen supporter of its work.
I will not spend time describing the diseases themselves or the number of people affected, because others have eloquently done so. Instead, I will talk about some of the ways in which we are responding. A great many of our fellow citizens are affected, so it is right that we have this debate today.
Some hon. Members raised the issue of GPs, diagnosis and training. Digestive health features both as part of the undergraduate medical curriculum and GP specialty training. For GPs the required competencies include: understanding the epidemiology of digestive problems as they present in primary care; how to interpret common symptoms in general practice; and how to demonstrate a systematic approach to investigating digestive symptoms such as IBD. IBD also features in the content guide for the Royal College of General Practitioners applied knowledge test, a key part of the assessment of trainee GPs, which must be passed in order to qualify.
As others have said, diagnosing the symptoms of IBD can be challenging for a GP. Even though the numbers are quite large, as we have heard, if we divide the numbers by GP practice across the country, it might be the case that some GPs are not seeing people very often. The variety of symptoms and the range of their severity differ from patient to patient. Problems may also arise owing to the fact that the symptoms of IBD, such as abdominal pain and weight loss, are shared with other more common, less serious conditions, such as IBS, which is estimated to affect 12 million people in the UK, as opposed to IBD, which affects around 300,000. However, as others have said, a misdiagnosis or a delayed diagnosis can lead to a range of further complications for IBD suffers, so it is important that clinicians have the tools and resources to help them to identify symptoms when a patient presents.
In addition to their clinical training and experience, a number of tools and resources are now available to clinicians to help them to diagnose and manage IBD. The “Map of Medicine” is an excellent free online evidence-based guide and clinical decision support tool, which is available to GPs and other healthcare professionals working in the NHS. It has published diagnosis and treatment maps for patients with IBD. The map supports GPs on issues such as differential diagnosis and helps them to identify “red flag” IBD symptoms and provide advice on appropriate diagnostics and referrals. NICE has produced a clinical guideline specifically to support clinicians in using faecal calprotectin testing to help doctors to distinguish between IBD and less serious conditions as it highlights inflammation specifically.
NICE’s role in setting standards in the diagnosis and management of a range of diseases is well known, and IBD is no exception in that regard. NICE published best practice clinical guidelines on the management of Crohn’s and colitis in 2012 and 2013 respectively. Once diagnosed, a number of treatment options are available for patients. The Scottish National party spokesperson, the hon. Member for Central Ayrshire (Dr Whitford), outlined some of the related challenges and some of the treatments in which she has participated. When treating IBD, the aim is either to heal the inflammation and so reduce the symptoms during a flare-up, which is known as inducing remission, or to prevent flare-ups from happening in future, which is known as maintaining remission.
The routine monitoring and follow-up of patients is a key feature of the guidance on the management of Crohn’s disease and ulcerative colitis. It ensures that patients can access specialist care when flare-ups or relapses occur. Protocols for monitoring should be agreed locally. Various drugs are recommended by NICE and funded by the NHS, and they can help with both of those aims. Although there is currently no cure for IBD, we know that some treatments can ease symptoms and improve quality of life—we heard Members talk about a particular member of staff and bring quality-of-life issues to the fore in their speeches. Management options include drug therapy, dietary and lifestyle advice and, in severe or chronic active disease, surgery.
I turn briefly to prescriptions. In addition to medical exemption, there are extensive exemption arrangements in England, based on age and income, via various means- tested benefits. For people who need multiple prescriptions and have to pay NHS prescription charges, such as those with long-term conditions, prescription prepayment certificates are also available, and it is worth highlighting that. I take the point about the challenge of prescriptions, but not everyone is aware of PPCs. This is the fifth year that the cost of an annual certificate has been frozen, and the third year that the cost of a three-month certificate has been frozen. Next year, both certificates will remain at £104 and £29.10 respectively. There is no limit to the number of items that can be obtained through a PPC. The annual certificate benefits anyone needing more than 12 items a year and the three-month certificate benefits anyone needing more than three items in that three-month period.
The IBD quality standard was mentioned. In general, quality standards are important in order to set out to patients, the public, commissioners and providers what a high-quality service should look like. NICE issues them, and they enable services to benchmark themselves against one another. The quality standard for IBD was published in February 2015 and contained priority statements covering important areas such as specialist assessment, drug monitoring and surgery, all of which is designed to drive improvements in IBD care. Although providers and commissioners must have regard to the quality standards in planning and delivering services, the standards themselves do not provide a comprehensive service specification and are not mandatory.
The six inflammatory bowel disease standards were published in 2013 by the IBD standards group, an independent organisation made up of a number of professional clinical organisations and the charity itself. The standards were designed to support clinicians and commissioning organisations in the development of local IBD services. If appropriate, they may be considered alongside sources of guidance such as the NICE guidelines.
A number of important issues have been raised in the debate that are very much matters for NHS England to look into. I am sure it will be really interested to hear about the challenges that have been raised in the debate, as well as about the Scottish strategy. As the shadow Minister said, the consideration of best practice throughout the United Kingdom is often common, as are many research outcomes, not only throughout the United Kingdom, but internationally.
Some Members mentioned the importance of nurse specialists. It was lovely to hear the hon. Member for Great Grimsby (Melanie Onn) pay tribute to the specialists with whom she has dealt and the standard of care and support she has experienced. Obviously the recruitment of staff is ultimately a local matter but, again, the NICE guidance states that local services should ensure that patients with Crohn’s or ulcerative colitis have support from an IBD multidisciplinary team, which should comprise a range of experts, including dieticians, who were mentioned, and clinical nurse specialists with particular expertise and specialist interest. That MDT care is a key feature of the quality standard, which sets out what great-quality care looks like.
The shadow Minister mentioned mental health support. It is worth noting for the record that we invested more than £400 million over the previous spending review period in improving access to psychological therapies—the IAPT programme—to ensure access to talking therapies for those who need them. That includes people with long- term conditions who are suffering from anxiety and depression. Recent positive announcements include the Prime Minister announcing £1 billion to start a revolution in mental health, which is a shared interest right across the House. No one has done enough on mental health in the past, and the matter is now much more front and centre in our thoughts. As part of that announcement, £247 million has been allocated to ensure that every emergency department has mental health support. That money reaffirms the Government’s commitment to parity of esteem between mental and physical health.
Several Members quite rightly asked about toilets. As others have said, it is essentially a matter for my colleagues in the Department for Communities and Local Government, but I will of course draw their attention to this debate. Local authorities in England are forecast to spend just over £60 million on such services in 2015-16. It is also worth noting that more than 400 local authorities and thousands of businesses have joined the national RADAR key scheme, meaning that some 9,000 toilets in shopping centres, pubs, cafés, department stores, bus and train stations and many other locations are now listed as being accessible through the scheme. I am sure that we have all seen them in our local areas. Official RADAR keys cost about £5 and can be bought from participating local authorities or Disability Rights UK shops. While noting that initiative, we must recognise that there is always more to do in that regard.
Members quite rightly drew the House’s attention to research and the need to know more. Dealing with a disease that currently has no cure is a big challenge, and research is key. The Department of Health currently spends more than £1 billion a year on research. As for IBD, the Department’s National Institute for Health Research awarded a £1.5 million research professorship for five years from 2013 to 2018 at the University of Oxford to examine the use of molecular techniques to re-stratify Crohn’s disease, aiming to get into the detail of identifying patients amenable to new treatment approaches and to develop new therapies. The NIHR is also investing just under £1 million in a study comparing the accuracy of MRI imaging and small bowel ultrasound in assessing the extent and activity of newly diagnosed and relapsed Crohn’s disease. The final report from the study is expected to be published in September 2017, and I am sure that there will be interest in that among Members.
My hon. Friend the Member for St Albans also mentioned the IBD BioResource. It is a really exciting project that brings together the Medical Research Council and the NIHR, supporting groundbreaking studies looking at the genetics of and new treatments for IBD that have the potential to make a real difference to patients’ lives. It will undertake a major new genetic analysis based on genome sequencing, and it will keep a database of 25,000 patients with IBD.
I have tried to cover most of the points raised in the debate. I hope that I have given hon. Members a sense of the Government’s ambition to make progress on research. I again pay tribute to the charity for contributing to the research. Partnerships between Government bodies, medical research bodies and specialist charities are an important part of making progress, not least because recruiting people to studies is important, and we cannot do that without the work of the charities.
I will write to Professor Sir Bruce Keogh, the medical director of NHS England, to outline the concerns that hon. Members raised today and to ensure that he is aware of Parliament’s interest in this issue and of the challenge to the NHS that has been outlined today. I urge Crohn’s and Colitis UK, as I do all relevant stakeholders, to continue to engage with NHS England to build valuable long-term relationships. I will write to the Royal College of General Practitioners, as a number of the issues that were raised relate to it. I once again thank my hon. Friend the Member for St Albans for securing today’s debate and for making such a meaningful contribution to raising awareness of this very important issue.