O wad some Pow’r the giftie gie us –
To see oursels as ithers see us!
Robert Burns – To A Louse
Any organisation or professional group that feels comfortable with itself all the time is in for a shock. The poem by Burns, (if you don’t understand it as it is written, just speak it out loud phonetically), is about a fashionable woman in church who is pleased with herself and her social position, but is unaware that a louse is moving around on her hat, in full view of the congregation. So, when the IBD UK alliance of which the BSG is a member along with 16 other organisations, including Crohn’s and Colitis UK, publish “Crohn’s and Colitis Care in the UK: The Hidden Cost and a Vision for Change” later this month, we as a Society need to take notice and think about how our services measure up. The report builds on the local service reports published in March 2020.
Self-reflection, whether it be on clinical practice, or equality and inclusion, is never comfortable. I remember attending a launch event for the IBD Standards at the Scottish Parliament, which turned into a deeply uncomfortable experience. Several patients who had experienced really poor care shared their stories. The result was MSPs turning on the professionals, forgetting perhaps that the professionals are important, although not the only players if services are to change.
The IBD UK report is quite different, both in tone and vision. We need to be clear about what patients think about their care if we are to work with them to establish change. Amongst the worrying trends highlighted is the time it takes to a first diagnosis. It is unacceptable to wait over a year, and a significant number of our patients did exactly that. A very large number had been to A&E at least once before they were diagnosed. Unscheduled care, no matter how good, is not an ideal place to be introduced to a potentially lifelong illness. Nearly one third were not offered any information after they were diagnosed. Reassuringly, a substantial number of our patients view their care as good, very good, or excellent, but the gaps in care are important and need to be addressed.
We can do better. Many of the things that are needed are already in place, it is just that they are not available to everyone and very few services have all the pieces of the jigsaw in place. We already promote MDTs, IBD teams, care pathways, self-management, and support for the welfare of our patients. We need to make sure all of our patients are in a position to receive this. We are already supporting service improvement through quality improvement KPIs for inflammatory bowel disease.
The report is honest, but not a litany of criticism, and is full of good practice examples. Above all, our patients value professional care and want to work with us. That is a very powerful combination and Crohn’s & Colitis UK has a long history of constructive work with the BSG. So, we should embrace the work carried out by the IBD UK alliance and promote it, and try to fulfil our patients’ wishes, which are reasonable.
There are some potential traps on the way. The impact of COVID has been huge, particularly on endoscopy services, and the pressure to make up time, especially on the urgent suspected cancer pathways, is enormous. We must ensure that IBD patients get priority too, one reason why the BSG supports enhanced senior triage is so that experienced clinicians prioritise referrals. We also need political support and dialogue, but not anti-professional mudslinging.
I don’t think there is a “louse on the bonnet,” but we could do with tidying up the ribbons, and we have friends who can help us.
Publicly available local service reports can be accessed from the IBD UK website: Services Map | IBD UK. Service Deep Dive Reports can be downloaded from the IBD Benchmarking Tool via secure login for those registered. Email email@example.com if you have any queries.
Register for the IBD UK Virtual Report Launch event, taking place at 6pm on Tuesday 27th April, at Webinar Registration – Zoom.
Dr Alastair McKinlay