This information explains how to access support and advice about your health following your coeliac outpatient appointment. If you have any concerns or questions that are not answered in this leaflet, please contact the gastroenterology nursing team via rf.gastroadmin@nhs.net. If you do not have email access, please contact Gastroenterology admin team on 020 7794 0500.

What is patient-initiated follow-up?

Patient initiated follow-up (PIFU) puts you in control of your follow-up appointment. Instead of being offered regular visits, you can make an appointment to see us if you have worries or concerns following your consultation about your condition.

You will be given ‘open access’ to the clinic for a period of 36 months from the date of your outpatient appointment. That means that if you are concerned about your Coeliac symptoms or management, you can contact us, and you will receive a telephone or face-to-face consultation within six weeks.

The reason we offer follow-up this way is because many patients do not benefit from having a regular outpatient follow-up and many patients find the follow-up visits to the hospital cause unnecessary disruption for themselves. By offering appointment bookings in this way, we hope to be able to offer you a consultation in the way most suitable for you.

What should I expect?

After your appointment with the Gastroenterology clinical nurse specialist, you may not need to have regular scheduled appointments at the hospital. In some specific cases they may book you for further procedures or want to see you in their clinic personally to discuss potential further treatments or tests that you may need. If this is the case, you will already have been told about this and an appointment letter will be sent to you in the post and will be on the Patient Portal.

You will need to have the following yearly blood tests with your GP to monitor your overall health which can be affected by coeliac. We will send a letter to you and your GP to inform them and would suggest you discuss it with them to make sure it is organised.

  • Bone profile
  • CRP
  • Full blood count (FBC)
  • Iron level
  • Liver function screen
  • Coeliac disease Ab level (TTG)
  • Urea and electrolytes (U&E’s)
  • Vitamin B12
  • Vitamin D

If your GP has any concerns about your blood results, they will contact the gastroenterology team to discuss them.

When to book an appointment

A follow up appointment can be activated if you have ongoing concerns about your condition if your condition changes significantly beyond what is expected or if you need further information or clinical input that cannot be met by your GP.

How to book an appointment

Please email rf.gastroadmin@nhs.net stating that you are on the PIFU pathway with a brief outline of your problem leaving your name, date of birth and hospital number. If you do not have email access, please contact Gastroenterology admin team on 020 7794 0500.

The hospital will send you a confirmation letter with the date and time of the appointment in the post. This ‘open invitation’ is for 36 months following your appointment unless specified otherwise.