Crohn’s and Colitis Treatment: England

Philippa Whitford Excerpts

Wednesday 24th February 2016 Westminster Hall

[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.