Your child's appointment with the 22q11.2 service

How to get an appointment

Once a child has been referred to our clinic, the family will receive an virtual or face to face appointment in the post and/or by text message.

Cancelling and rearranging your child's appointment

If you cannot make your child’s outpatient appointment, for example if you, your child or your household (including your extended bubble) have developed symptoms of coronavirus (COVID-19), please contact us as soon as you can.

By phone

Please call the paediatric appointments centre on 020 7188 4000.

By email

If you have any questions about your appointment, please email

Please include the child’s name, hospital number (if known), date of birth and your contact telephone number.

Please also give full details of the appointment date, time and the name of the doctor/nurse.

On receipt of your email, we will cancel the existing appointment on the hospital’s booking system. Please tell us if you’d prefer to be contacted by phone or email and we will get back to you to agree a new date and time.

We are committed to seeing as many outpatients as we can each and every day. We try to allocate all available appointment times, even those that come about as a result of cancellations.

Please keep appointment times whenever possible, as the rescheduled date can be up to six weeks later.

If you do need to cancel, we will arrange another appointment time for your child as soon as possible.

Outpatient reminder text messages

We will send you a text message to remind you of your child's hospital appointment or admission date and time.

Please contact us if your mobile phone number changes by sending an email that includes the child’s full name, hospital number (if known) and date of birth to

What to bring

Please bring your child’s red book and any letters from other hospitals regarding your child’s care. It is also helpful to bring an up to date list of any medications that your child is taking.

What to expect 

We run clinics face-to-face at the Evelina and also virtually using Attend Anywhere, this will be clarified at the time the appointment is booked. The link to the virtual clinic will be sent by text message.

The clinics are usually monthly on the first Wednesday of the month.

The clinic team includes:

Visiting professionals and medical students are often present.   

Each new patient appointment lasts 45 minutes with the team. The team may carry out observations and health checks and allow parents to discuss any of their concerns.

Most children coming to the clinic will need blood tests the same day. We know that this can be stressful for many of our patients. Please let us know on the day if your child would like anaesthetic cream and we can usually get the support of our play specialists. Our dedicated children's phlebotomy team are very experienced in taking blood from our patient group.

Follow up appointments are arranged based on individual clinical need. These can be face-to-face appointments or virtual video appointments. 

We see each child on an annual or two-yearly basis until they are 16 years old.

Useful links

The Max Appeal is the UK charity that supports children and families with 22q11.2 deletion syndrome. There are leaflets in different languages and  leaflets on distal deletion syndrome.