Your ongoing care and involvement

Service performance

The IBD UK Standards say what high-quality care should look like at every point of the patient journey. The IBD Benchmarking tool supports hospitals to assess how they are doing against the 2019 IBD Standards and identify where they can improve. 

The RSCH/PRH pharmacy team integration into the MDT was recognised an example of excellent practice by IBDUK.

Second opinions

Decisions to have surgery or take strong medications can be very difficult. You may want to be absolutely sure that every option has been considered, and that the advice you have received is correct. We discuss all complex decisions at a weekly team meeting. If you have concerns and would like to see a different consultant to get another view on your treatment, please talk to us. You can also talk to our IBD helpline about your worries. 

Support and aftercare

Please attend all your appointments on time and let us know as soon as possible if you can’t attend. Also, don’t suffer in silence – if you need our help let us know via the helpline. 

It is critically important that you take your medication as prescribed. If it is giving you side effects or you have concerns about taking it, please tell us straight away.  

If you are pregnant or trying to conceive, please tell an IBD clinician as soon as possible. You can do this at your clinic appointments or via the helpline, whichever is sooner. It may affect decisions about investigations and treatments.  

There is a medical obstetric clinic which can help with any specific issues about your IBD during pregnancy and delivery. Most IBD treatments are safe in pregnancy. Please don’t stop medication without letting us know, so that we can talk to you about the risks and benefits.  

We advise all our patients, but particularly those with Crohn’s disease, to stop smoking. For help with quitting please ask.  

You may find it useful to download the NHS app. You can use it to look up your blood tests and hospital appointments and order regular medication via your GP. 

IBD (RSCH & PRH) patient panel 

There is a strong network of people with IBD in the Brighton and Sussex area and a patient led panel has been set up. 

Getting involved with a patient panel can be enjoyable and rewarding, as well a great learning experience for both patients and professionals. 

Patient panels can: 

• Suggest developments and service improvements. 
• Help to support the case for new resources, like a new team members. 
• Help to shape ideas for redesigning services, new developments and research. 
• Inform and empower other patients, families, carers and young people. 
• Give the IBD team feedback on what works in the service and what could be better. 

If you are interested in joining please email [email protected]

Research

Research is vital to make advances in IBD for both treatment and management. Do you think you can help? We have a dedicated team of research nurses whom may approach you to become involved, you choose. Please discuss this with your gastroenterologist if you are interested.