BBSUK

Service Overview

Specialised BBS clinics for children are available at Great Ormond Street Children’s Hospital (GOSH) and Birmingham Children’s Hospital (BCH) and referrals are allocated by the service leads according to location and other factors. Telemedicine appointments are also offered to patients either instead of or in addition to standard out-patient appointments.

Below, is cross-service information to help you prepare for your appointment.

For information that is location/service specific, click on one of the following buttons:

Your appointment

Preparing for your appointment

  • Prepare your child/young person for the appointment by talking with them about what they might expect to happen. You can find specific information about your appointment via the buttons at the top of the page.  The teams are very experienced in supporting our young patients with their appointments and will do their best to make sure they are comfortable and happy.  If your child is nervous/anxious about blood tests, there is helpful advice available via this
  • Bring recent reports (from the past year) to your clinic appointment.
  • Complete a food diary for your child and bring to your appointment.
  • Think about what you want to get out of the appointment and prepare a list of questions – you can send these to your Patient Liaison Officer in advance if you wish.
  • Think about the bigger picture, you can discuss any issues that fall outside of the main symptoms for example if you have a review coming up at school or are preparing to apply for an Education, Health and Care Plan, make sure the team are aware of how they can support you.
  • If English isn’t your first language, contact your Patient Liaison Officer and ask for an interpreter.
  • If you need extra support, ask someone to attend the appointment with you. Show them your list of questions and tell them what you want out of the appointment. Apart from moral support, they can prompt you on things you’ve forgotten.
  • If your child needs to have bloods taken locally within a month of the appointment, contact your Patient Liaison Officer for the list of bloods needed for the BBS clinic.

Travelling to Hospital

  • Patient accommodation: for families who have two hours or more to travel to clinic, we can provide accommodation for a maximum of 2 parents and 2 children (including the patient).  One night’s accommodation will be provided except for children attending from Scotland or Ireland who may qualify for 2 nights’ accommodation.  For more information/to organise accommodation please contact your Patient Liaison Officer.
  • Patients/families in receipt of means tested benefits can claim their travel costs back from the hospital cashiers’ office. The full list of qualifying benefits can be found on the following link BBS Clinics Travel Expenses Information. Proof of benefits entitlement dated within the last three months must be presented at the cashiers office together with receipts for costs incurred. Patient transport can be arranged for patients who have specific needs, contact your Patient Liaison Officer for more information

After the Appointment

  • Each clinician will dictate an entry to be included in a report that will be sent out after the appointment to your GP with a copy to yourselves; this may take a few weeks. File the report safely, it may be needed for other appointments or school reviews.
  • Make a note of any referrals made or suggested during the appointment and chase these up locally.
  • If you have any concerns after the appointment or you forget to ask something, contact your Patient Liaison Officer and they will do their best to help you.
  • If you are concerned about your child’s health, your first point of contact should be your GP. If you are between BBS clinic appointments and would like to be seen sooner than scheduled, contact your Patient Liaison Officer to discuss.