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IBD patient panel

Update from Dr Tim Raine

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.

About us

The inflammatory bowel disease (IBD) patient panel is comprised of IBD staff, patients and carers at the hospital. The panel meets via the internet four times a year to share views and news about the hospital and so that patients and carers can provide feedback to the staff that care for them about how the IBD service is running. Staff share news about changes and events which would be of interest to IBD patients and their carers.

The Panel was set up in 2019 by staff that treat and support IBD patients at the hospital.

It is not intended to be a psychological mutual support group although it has a reciprocally caring, supportive and empathetic ethos. The IBD patient panel is keen to ensure that as diverse a range of patients can have a voice in the running of the IBD service as possible, even if you are unable to make an ongoing commitment to the group.

Join the panel

The IBD panel would like to welcome all adult patients at Addenbrooke’s and their carers to think about joining the IBD patient panel for the next meeting. Younger people, those of us with neurodiverse, mental health and / or with physical disabilities and people from households which live on very low incomes are currently under represented and would be very welcome.

If you think you or your loved-one might like to try and see if you would enjoy joining a meeting to see what it is like, please email the IBD patient panel and the volunteer secretary (who is also an IBD patient) will send you information about it.

MyChart patient portal

Access your all of your hospital health information via MyChart

MyChart is the electronic patient portal at Addenbrooke’s and The Rosie Hospitals, which allows you to securely access parts of your health record held within the hospitals’ Epic electronic patient record system.

MyChart is designed to improve communication between you and your clinical teams and enable you to be more involved and informed about your care and treatment by having access to your information.

You can send a message to the IBD Outpatient Nurse Specialists via MyChart if you have a MyChart account (although it can sometimes take a week or so before they can respond).

You can access your blood tests and other test results if you sign up for MyChart and receive appointment notifications too. You can also request your hospital records to be sent to you in PDF format and if you are away from home you can share your hospital records with a doctor anywhere in the world. 

It is worth noting that a MyChart account is password protected. If you do sign up for MyChart you will automatically be opted-out of receiving routine letters by post and you will need a password to log in and read your letters. If you have memory problems or have had persistent difficulties dealing with, handling and remembering passwords, it may be better for you not to sign up for MyChart.

To find out more and to sign up for MyChart access, please visit this page MyChart | CUH (opens in a new tab).

Useful resources for IBD patients

Bucks NHS trust - Having a gastroscopy in hospital


Radar keys for disabled people's toilets

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.

Blue Badges for people with hidden disabilities including incontinence

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).

Feedback and complaints

If you wish to share your feedback with us, please let us know your views here.

If you wish to make a complaint, please visit our 'make a complaint' webpage or the patients association website. (opens in a new tab)