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Inflammatory Bowel Disease (IBD)

We offer care to Royal Sussex County and Princess Royal hospital patients with IBD covering medical, nursing and surgical treatments, nutritional support, research and education.

Important:

Please note

This service is for patients at the Royal Sussex County and Princess Royal hospitals only.
Please see the contact details for Worthing and St Richard’s Hospital IBD service below.

Our specialist Inflammatory Bowel Disease (IBD) team consists of medical and surgical consultants, nurses, pharmacists and dietitians and supported by administrative and secretarial staff.

How we work

  • We hold weekly multi-disciplinary meetings to discuss patient cases and ensure best care. We will give you feedback after the meeting if your case is discussed.
  • At our medical doctor IBD clinics, the doctor will discuss the nature, extent and severity of your disease with you. Together you will decide the most appropriate way to investigate and treat your IBD. You will have a named consultant who will lead your treatment, but you may not see them at each appointment.  
  • Our nursing IBD clinics are led by senior nurses with special training in IBD. They offer support and information about IBD and manage treatment in some cases. The nurses run the IBD advice line and are often the best point of contact within team. They also see outpatients, visit the wards, and run telephone clinics and administer treatments at the infusion clinic.  
  • Pharmacy IBD clinics are led by specialist pharmacists. They give advice to patients who are starting a new treatment and prescribe and monitor patients on these new medications. They can provide support with any medication concerns.  
  • IBD sometimes needs surgical treatments. We work closely with our surgical colleagues to decide on the best treatment. If surgery is being considered, you will have the opportunity to discuss this with our surgeons in their surgical IBD clinics.  
  • We run Stoma clinics led by specialist stoma care nurses who support patients with new and existing stomas. We offer a range of clinic locations and can do home visits if needed.  
  • If you are transitioning to our service from the Royal Alex in Brighton we run a paediatric to adult transition clinic. The clinic aims to see all 16–18-year-olds with IBD on an annual basis in addition to their standard care. You will have the opportunity to talk through the transition process with the nursing team as well as the more medical aspects with a paediatric and adult IBD specialist.  
  • We hold virtual biologic review meetings attended by the IBD lead gastroenterologist, IBD nurse specialists and IBD pharmacy team to discuss patient biologic medication management as required by NICE (National Institute of Clinical Excellence). Feedback is provided to patients after the meeting.
  • Our dietician clinics give advice about dietary management of IBD. They may also see you to discuss more general nutritional issues, or to help you to adapt your diet to improve your symptoms.  
  • Research is vital to make advances in IBD for both treatment and management. We have a dedicated team of research nurses who may approach you to become involved. You can choose to be involved or not.  
  • IBD infusion clinics run at the Princess Royal Hospital on Wednesdays (morning only) and Thursday each week. 
  • Our Homecare medication service provides medications to patients at home.
  • Different medications are supplied by different companies. Please make sure you know which company your medication comes from before contacting (this information will be in your welcome pack):

Getting ready for your appointment

Our service runs across two sites. Please check whether your appointment is at the Royal Sussex County (RSCH) or Princess Royal (PRH) hospital. Your appointment may be face-to-face or via telephone. This information will be in your appointment letter and phone text reminder. 

Please have a full list of your current medications, both prescribed and bought, available for review.  

If the appointment is by telephone, please be in a place where you feel comfortable to discuss your symptoms.  

It may also be useful to keep a summary of your disease history such as: 

  • your diagnosis 
  • date diagnosed 
  • which part of your bowel is affected 
  • current and previous medications (along with when and why they were stopped) 
  • recent investigation results.  

We may suggest blood tests, sample tests, chest x-rays, scans and/or endoscopy investigations to diagnose and monitor your IBD. We will send you the details if this needs to be done before the clinic.  

Clinics may not run to time. Please allow 30 minutes before and after your scheduled time for seeing/speaking with a clinician.  

To change or cancel your booking please call 0300 303 8360.  

What happens at your appointment

To ensure we are managing your IBD most appropriately, the clinician will ask you about your current symptoms and medications.  

If it is a face-to-face appointment you may need a physical examination.  

We may suggest blood tests, sample tests, chest x-rays, scans and/or endoscopy investigations to diagnose and monitor your IBD. Blood tests can generally be done on the day of your clinic appointment, but most other tests will be done a few days or weeks afterwards. The relevant department will send you the details. 

Contacts

IBD helpline

Open Monday to Friday (closed weekends and bank holidays). We triage your queries and reply based on the urgency. We aim to get back to all patients within 2 working days.

Call (answerphone) 01273 664427

Email [email protected]

Please note, these are not emergency lines. For emergencies in working hours contact your GP or NHS 111. Out of working hours call NHS 111 or go to your local A&E.

Stoma nurse helpline

Open Monday to Friday office hours (closed weekends and bank holidays). This is an answerphone service. Please leave a message and we will get back to you.

Email [email protected]

Call (extn. 64215) 01273 6969655

Worthing Hospital IBD Service

01903 205111 Ext. 84332

[email protected]

St. Richard’s Hospital IBD Service

01243 788122 Ext. 33161

01245 831812

[email protected]

Where we are

Outpatients

Inpatients 

Level 9 Ward (RSCH)

Meet the team

Consultant Gastroenterologists

IBD surgeons 

IBD nurses 

  • Ephrem Adlao 
  • Heidi Barkhorder 
  • Emma Hills (nursing lead) 
  • Jeanette Joy 

IBD pharmacy  

  • Grace Chong
  • Alisha Fernandes  
  • Naomi Hobbs 
  • Angela Packham  
  • Fiona Rees (pharmacy lead)

IBD admin

  • Karen Sharp

Stoma nurses 

  • Jesse Boxall- Steedon  
  • Lindsay Branch  
  • Kate Evans (lead) 
  • Tina Wallker  

Dieticians 

  • Sean Coleman  
  • Katie O’Callaghan 

Helpful resources

General information for IBD 

Active infections

Download the active infection information to print

Non-Covid

  • If you take a mesalazine (e.g. Octasa, Salofalk, Pentasa, Asacol) you can continue this medication even if you have a temperature.
  • For all other IBD medications, if you are unwell with a temperature, pause the medications. Restart when well and you have finished taking any antimicrobials (e.g. antibiotics, antivirals and antifungals).  If the pause is likely to be over 2 weeks, please contact the IBD team [email protected]  
  • If you feel well, continue taking medication.  

Covid

Letter to patients: Important information about treatments for Covid (136kB)

  • If you have Covid symptoms, take a test immediately, even if symptoms are mild.
  • If the test is negative but you continue to have symptoms, take another test on each of the next two days (three tests in total over three days).  
  • Report the test result where possible at https://www.gov.uk/report-covid19-result or by calling 119  
  • For all medications for IBD, except mesalazines, you are likely to be eligible for anti-viral treatment. You can self-refer to Alliance for Better Care or contact your GP practice or NHS 111 immediately.  
  • Mesalazine can continue. 
  • Steroids are likely to continue, but please check with the IBD team via [email protected]  
  • Other immunomodulators must be paused until Covid symptoms have gone.     

Medications for IBD

Source: Crohn’s and colitis UK

Biosimilars Information from UHSussex (26kB)

Diet and IBD 

Surgery and IBD

Employment and IBD

Crohn’s and Colitis UK  is a national charity offering support and information to patients with IBD and their families. Their website has a lot of helpful and reliable information. You can contact them on 0845 130 2233 or [email protected].

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. 

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. 

See how well our IBD service is performing against the standards

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. 

IBD helpline

Open Monday to Friday (closed weekends and bank holidays). We triage your queries and reply based on the urgency. We aim to get back to all patients within 2 working days.

Call (answerphone) 01273 664427

Email [email protected]

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.  

Living with Crohn’s or colitis: pregnancy and breastfeeding

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. 

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