BBSUK

Service overview

Specialised BBS clinics are available at St Thomas’ Hospital, London (GSTT) and Queen Elizabeth Hospital, Birmingham (QEH); 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

  • If you are feeling anxious about your appointment, talk to your Patient Liaison Officer about the day and what you can expect to happen.
  • Bring recent reports (from the past year) to your clinic appointment.
  • Think about what you want to get out of the appointment and prepare a list of questions. These can be recorded onto a voice memo or email and can be sent to your Patient Liaison Officer in advance if you wish.
  • Think about the bigger picture, you can discuss any concerns you have – even those that fall outside of the main BBS symptoms. If something has been worrying you but you are not sure if it can be dealt with in the clinic – make a note and ask the question!
  • 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. Share with 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 you need 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.
  • Urine bottles are sent out to patients in advance of their appointment, please ensure an early morning sample is collected and taken to clinic.

Travelling to Hospital

  • Patient accommodation: for patients who have two hours or more to travel to clinic, we can provide accommodation for a maximum of  one patient and one escort.  One night’s accommodation will be provided except for those attending from Scotland or Ireland who may qualify for two nights’ accommodation.  For more information/to organise accommodation please contact your Patient Liaison Officer.
  • Patients 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 InformationProof 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 as it may be needed for other appointments.
  • 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 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.