Crohn’s and Colitis Treatment: England

Melanie Onn Excerpts

Wednesday 24th February 2016 Westminster Hall

[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.

--- Later in debate ---

On resuming—

[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.