IBD patient panel

Update from Dr Tim Raine - February 2024

The service remains busy, with around 900 outpatient inflammatory bowel disease (IBD) clinic appointments provided each month in recent months. We do have around 400 outpatients with IBD who are currently overdue for a booked follow-up appointment and we are continually looking at ways to improve efficiency in clinic delivery. One of these is to trial a new way of reviewing patients remotely - using an approach already piloted in other disease areas. The so-called “patient not present” approach will involve selected patients receiving a letter requesting that they complete an electronic questionnaire and, where relevant, provide blood tests and a stool sample. These are then reviewed by a consultant earlier than any planned clinic review and enable identification of patients requiring more urgent review, and also those who are doing well and who are stable.

With around 6,500 outpatients with IBD under followup, it is a relief that inpatient care for IBD remains relatively rare. Typically, at any one time, we will have between 1-5 patients with IBD admitted under our care. For those who are admitted, we know that dignified care on an appropriate, well equipped ward is critical, and in particular, with adequate provision of toilet facilities. The COVID-19 pandemic forced the relocation of our previous gastroenterology ward to ward C7 during trust-wide reconfigurations, which has not been an optimal environment for care of IBD patients. With the help of the patient panel, we made these representations forcefully to the trust management early in the pandemic and were promised action. It has taken a lot longer than planned, but a new ward, U2, is now finally open and providing a base for the care of gastroenterology patients. U2 is a much more suitable environment and early patient feedback has been good.

We continue to see new drugs added to the list of licensed drugs for IBD. After approval by a regulatory agency (currently the European Medicines Agency, but now requiring a "rubber stamp” from the UK MHRA) a drug still needs to be assessed by NICE who will decide whether the NHS should fund a given treatment. After this decision, we then have to work with local commissioners, pharmacy and specialist nurse teams to establish the place of the drug on our formulary. NICE have funded several new drugs for UC and Crohn’s in recent months, and we continue to add these to the list of options we can offer patients, where appropriate.

On the topic of new drugs, we have welcomed Sophie Warren to our team to a new post as a dedicated IBD pharmacist. Sophie was previously working as a senior pharmacist across gastrointestinal medicine and surgery, but she has had a developing interest in the care of patients with IBD and she has joined our team to provide dedicated, high quality advice for patients initiating or undergoing review of the use of immunosuppressant drugs.

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

CUH patient and public involvement panel - For other ways patients can become engaged with the hospital
Joining the IBD registry (opens in a new tab)
Crohn’s and Colitis UK (CCUK) guide on treatments for IBD (opens in a new tab)

National IBD patient support charities

Watch: Having a gastroscopy in hospital - Bucks NHS Trust (opens in a new tab)

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)