Your appointment with the cleft service

How to get an appointment

Children may be referred to our service after a diagnosis of a cleft lip or palate at a 20-week scan during pregnancy. Babies born with a cleft lip or palate usually have an appointment at 4 to 6 weeks old.

We also accept direct speech and language referrals, orthodontic referrals and children's dental referrals.

Adults who were born with a cleft and live within the Evelina London cleft service region (south London, Kent, Surrey, Sussex) may be referred into the service by their GP, Dentist or other healthcare professional for any cleft treatment needs.

We have a self-referral form which can be downloaded here to give to your GP to help them with this referral.

A member of our outpatient team will be in touch to schedule your, or your child's, first appointment once the referral has been accepted.

Changing or cancelling your appointment

If you need to change or cancel your child’s appointment, please contact us by calling 020 7188 1321 or emailing gst-tr.cleftservices1@nhs.net.

Please tell us as soon as possible so we can offer the appointment to another patient and reschedule your appointment.

Before your appointment

You should bring your child's red book to all your appointments.

If your child is a new baby, we recommend you bring their usual feeding equipment to their appointment as you may need to wait for some time.

During your appointment

At our multidisciplinary clinic your child will see a range of healthcare professionals all at once. This may include a:

consultant cleft surgeon
clinical nurse specialist
consultant orthodontist
speech and language therapist
consultant children's dentist
clinical psychologist

This means that all of your child's assessments and notes can be done on the same day so you don't have to make multiple trips to hospital. It also means you'll be able to ask any questions you have and get answers from the relevant professional right away. Find out more about our Evelina London cleft services team.

We may need to take photos or X-rays in order to document the different stages of development, treatment outcomes and to help guide future treatment planning. We'll discuss this with you on the day.

Appointments usually last between 20 and 60 minutes and you may be seen in different clinic rooms. Please allow plenty of time for your appointment.

As we're a teaching hospital, students and visitors may be observing the team as part of their training. We'll always ask your permission for them to observe your appointment.

After your appointment

At the conclusion of your first appointment we’ll agree a treatment plan or next steps with you.

We will send a letter to summarise our appointment with you and the plan.

If we agree that you or your child, needs to have an operation, we will arrange an appointment with the pre-assessment clinic.

A clinical nurse specialist will stay in touch with you throughout your child's treatment.

We have standard time points where we aim to see and review most patients, at age 3, 5, 10, 15 and 20. We may offer additional appointments in between these time points as clinically needed. These appointments take place in multi-disciplinary clinics, where you or your child will meet with some, or all, of these team members:

consultant cleft surgeon
consultant orthodontist
speech and language therapist
clinical psychologist
clinical nurse specialist
consultant paediatric dentist
medical photographer
audiologist

Treatment options

A member of our cleft clinical nurse specialist team will call you within 24 hours of receiving the referral from the ultrasound department.

They will arrange an appointment with you to give you information about the cleft service and answer any questions you have. They will also:

give you some information from the Cleft Lip and Palate Association (CLAPA) and a Royal College of Surgeons booklet
show you photographs of babies before and after surgery, which many parents find helpful
arrange for you to meet another family whose baby has had surgery if you would find this useful

They will also arrange to see you about 6 weeks before the birth to discuss feeding. A feeding plan will be worked out and written in your antenatal notes.

This is also a good opportunity to ask any remaining questions and talk about any feelings you have about seeing your baby for the first time.

A member of our cleft clinical nurse specialist team will contact you within 24 hours of the referral to arrange a visit.

When they visit you the cleft clinical nurse specialist will carry out a feeding assessment and support you with whatever method of feeding you choose. Our cleft nurse specialists work closely with the staff in the maternity unit at St Thomas' Hospital.

They will be involved with your baby's care while they are in hospital. They will also see you at your home after you leave hospital, to support you with feeding and monitor your baby's growth. The cleft clinical nurse specialists will provide specialist support alongside your midwife and health visitor.

In the UK, most centres work to the same plan, aiming to repair:

the cleft lip between 3 and 5 months of age
the cleft palate between 6 and 12 months of age

These are both done under a general anaesthetic and your child will usually be in hospital for 1 to 2 nights after their surgery.

Pre-assessment clinics

Before their surgery, we'll ask you to attend a pre-assessment clinic with your child. If you do not attend this appointment your surgery will be cancelled. Please make sure you discuss pre-assessment with the cleft admissions officer.

At this appointment, we'll make sure your child is fit for their general anaesthetic. We'll also talk to you about what will happen on the day of your child’s surgery before their hospital stay. You and your child will get the chance to ask any questions.

Find out more about the pre-assessment clinic.

Staying the night

Patients up to 16 years old who live very far way and will struggle to arrive for surgery by 7.30am may be able to stay in Gassiot House the night before surgery. We offer accommodation for patients and 1 family member or carer at Gassiot House depending on your home address and availability.

You may also be eligible to stay at the Ronald McDonald House. Most rooms in the Ronald McDonald House are for up to 4 people, however some can accommodate up to 6 people.

There is usually space for 1 parent or carer to stay on our wards after surgery with patients under 16 years old, although we cannot guarantee this.

After surgery

We visit babies and children when they are at Evelina London to offer you advice and support about feeding and caring for your child after the operation.

We'll also see your child 1 week after surgery and with the rest of the team in the cleft clinic 6 to 8 weeks after surgery.

Joint clinics with the clinical nurse specialists, speech and language therapists and dentists at 18 months are now being trialled in some areas. This gives you the opportunity to talk through your experience of the service with a nurse so that we can make improvements to the service based on your feedback.

We also offer: