Birmingham Children's Hospital

Birmingham Women’s and Children’s Hospital will send you a letter or text message confirming the date and time of your appointment.

The letter or message will include a link to Zoom with an Identification number and a unique password.

Zoom allows people to meet virtually by using a computer or mobile device.

Follow the link provided by the hospital to download the Zoom software if you do not already have this set up on your device. It is free and quick to install.

Professor Tim Barrett or Dr Melanie Kershaw will lead the virtual clinic and they will be joined by other members of the BBS team.

This may include Professor Tim Barrett or Dr Melanie Kershaw, Catarina Leal or another dietician, Marie McGee Transition Coordinator, Pete Eyre our Diabetes Nurse Specialist if available. Amy Clapp from BBS UK Clinics will also join.

Doctors from your regular BBS specialised clinic will take part in the clinic.

A clinical nurse specialist and Angela Scudder from BBS UK will also join.

There are a few things you can do to help you prepare for the clinic:

• Download the Zoom software onto your device.
• Make sure your device has a camera, microphone and speakers (mobile devices and laptops often have these built in).
• Weigh your child/young person at home if you can and make a note of their weight. Please measure their height too if possible.
• Put together a list of your child/young person’s medication.
• Make a note of any new health professionals involved in your child/young person’s care.
• Make a note of any questions or concerns you may have.
• Complete the food diary if one has been sent to you by your Dietitian and return via email before your appointment: [email protected]
• Decide if you would like anyone with you during the clinic. It may help to have someone with you to help keep your child/young person occupied.
• Some children/young people may like to ask their own questions. Please take time to discuss this with your child/young person and practice their questions with them beforehand, so they feel confident to speak up for themselves (Self Advocacy).

• Follow the Zoom link and enter the identification number and password provided by the hospital. This will take you to a virtual waiting area.
• At your appointment time or soon after, you will then be taken to a new screen and the clinic team will all appear via video link in small boxes at the top of the screen.
• Professor Barrett or Dr Kershaw will introduce everyone on the call and will then have a discussion with you about your child/young person.
• You can ask questions at any time during the Telemedicine Clinic.
• If for any reason you are not able to connect to Zoom, Professor Barrett or Dr Kershaw will contact you by phone.
• If you need to spend longer with an individual member of the team, then we can provide this with additional phone call support. The health professional will arrange a convenient day and time for this to take place.

You will receive a clinic summary letter in the post and a copy will also be sent to your GP and other health professionals involved in your child’s care.

You can contact any member of the Bardet-Biedl Syndrome team at Birmingham Children’s Hospital via the Clinic Coordinators, Lindsay Wilson or Clare Stevens on 0121 3339267.

You can also contact your BBS UK Patient Liaison Officer, Amy Clapp on 07591 206787 or Laura Davis on 07512 198484