IBD patient panel

During a period of very clear challenges for the NHS in terms of staffing and ongoing industrial action, we have continued to work on our main challenge which relates to constraints in outpatient access. With almost 7,000 patients under active followup this is a really challenging area. We are fortunate to have recovered much of our physical clinic space, which means that we can generally offer IBD patients their choice of face-to-face or virtual (telephone or video) consultation. In this regard, when we have worked in the past with the patient panel to try to identify who wants what, the clear message has been that everyone has different circumstances, and we need to offer choice. Generally, if you are booked for a face-to-face appointment and would like to convert this to virtual, or vice versa, please just call clinic 12 in advance of the appointment and we can usually accommodate the request. We also continue to work on supporting patients through our IBD helpline and with use of MyChart where appropriate (but please do bear in mind that we prefer to receive clinical questions through the helpline since this will generally lead to a call with one of our specialist nurses where we can resolve matters).

Many of you will have completed one of our symptom questionnaires, either on paper or online as part of a visit to clinic or our infusion unit. We are working on a major project to harmonise and expand these questionnaires so that we can gather a more complete picture of symptoms between clinic appointments in a way that feeds directly into the electronic patient chart. As part of this project we will also be piloting a scheme where we episodically review patient charts in a recurring manner using available symptom scores and blood test results. This approach to review (termed "Patient not present" - i.e. reviewing chart but outside of context of clinic visit) has been piloted in other areas of chronic disease in the trust and has proven valuable to identifying both patients in need of expedited clinic review and also those whose disease is under good control.

New drug approvals have continued. In recent months we have received approval to start using a drug called upadacitinib for both Crohn's and ulcerative colitis, as well as a drug called risankizumab for Crohn's disease. The increase in choice is really welcome since it gives us options to discuss with patients that can address preferences including route of administration and side effect profiles.

The inpatient service will be relocating to the new ward (U2). Exact date still to be decided but once we have it confirmed we will, of course, share.

If you sometimes experience incontinence or you have got to manage a stoma, you have the right to get a RADAR key in order to be able to use disabled people’s toilets. These keys can be purchased in Boots shops for £3.99, or you can buy a pack of three keys from Amazon. It is handy to have more than one in case you lose one or accidentally leave it in the toilet.

You can apply to your local authority for a Blue Badge even if you don’t have problems walking.

People who regularly experience faecal or urinary incontinence are likely to have an application for a Blue Badge taken very seriously. We can confirm that a member of our IBD Patient Panel who applied to Cambridgeshire County Council for a Blue Badge on grounds of faecal incontinence was granted a Blue Badge, that patient suffers from anxiety because of the incontinence. You can apply for a Blue Badge even if you do not have a car or a driving licence. Blue Badges do not go with a particular car, they go with the person who owns the Blue Badge. So you can put your Blue Badge in someone else’s car as long as you are with that person. You can also use them in any taxi that is taking you somewhere.

It costs about £10 for you to submit an application and you would probably need a letter from a clinician stating that you have an inflammatory bowel disease.

There is more information about it on the Crohn's and Colitis website (opens in a new tab).