At Crohn’s & Colitis UK, we were part of the Study Advisory Group. We reviewed the draft questionnaires and helped shape recommendations based on the findings. As part of our work, we reached out to you to hear your experiences – so thank you to everyone who completed the online survey and took part in the focus groups.
This is an important and comprehensive review with evidence received from 553 clinicians, 414 sets of case notes, and 138 organisational questionnaires, all supported by qualitative data from patient surveys and focus groups. The report refers to the IBD Standards throughout and reinforces that patient outcomes are better when IBD surgery is timely, led by surgeons with the right expertise, and with effective multidisciplinary working. As in IBD standards, the review makes the case for people going under surgery to be offered psychological support.
The review concluded that
- Surgery for people with drug resistant Crohn’s disease should be considered earlier in the treatment pathway, instead of surgery being perceived as a failure of medical care.
- Once a decision to perform surgery has been made, it should be undertaken within a month to prevent people’s condition deteriorating while on waiting lists and requiring emergency surgery.
- People with Crohn’s disease should be supported by a multidisciplinary team to meet their wider health needs, particularly psychological and dietary support.
Ian C Martin, NCEPOD Chair, said:
This is predominantly a disease that affects young adults during what should be their most productive years, and so quite apart from the chronic and often painful symptoms they experience, there can be profound socio-economic consequences. However, despite this, unlike cancer, it appears to have the status of a ‘benign’ disease, which may be why it has not so far received the same levels of attention, investment and organisation.
Sarah Sleet, CEO of Crohn’s & Colitis UK, said:
There are more than 200,000 people in the UK living with a diagnosis of Crohn's and many of them can't get on with living the lives they should be living because they are so unwell. Inflammatory Bowel Disease is with you for life - it's painful and debilitating and there is no known cure. Patients deserve a clear path to diagnosis and the best treatment options available throughout their IBD journey. People are often worried about having surgery, but once they do they find it is life changing. They often wish they’d had it done sooner, so it is really important that surgery is not seen as a last resort, and that people are not left waiting too long once the decision to operate has been made.
