How do I get an appointment?
Children may be referred to our service following a diagnosis of a cleft lip or palate at a 20 week scan during pregnancy. Babies born with a cleft lip or palate usually attend a clinic at four to six weeks old.
We also accept direct speech and language referrals, orthodontic referrals and children's dental referrals.
Adult patients who have had previous cleft treatments may be referred back to our service by their GP, dentist or other healthcare professional.
A member of our outpatient team will be in touch to schedule the 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 firstname.lastname@example.org.
Please tell us as soon as possible so we can offer the appointment to another patient and book you in at new time.
Before your appointment
You should bring your child's red book with you to all your appointments.
We also recommend that parents/carers of new babies bring spare feeds and usual feeding equipment as there may be some periods of waiting at your child's appointment.
During your appointment
At our general cleft clinics, your child will see a range of healthcare professionals all at once. Usually this can include a consultant surgeon, clinical nurse specialist, consultant orthodontist, speech and language therapist, consultant children's dentist and clinical psychologist. This can be daunting, but 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 back to the hospital. It also means you will be able to ask any questions you have and get answers from the relevant professional right away. Find out more about some of the staff you might meet.
We may need to take photos and/or x-rays of your child's face but we will discuss this with you on the day.
Appointments usually last between 15-30 minutes and you may be seen in different clinic rooms by some of the healthcare professionals listed above. Please allow plenty of time for your appointment as there may be some periods of waiting.
As we are a teaching hospital, students and visitors may be observing the team carrying out training with us. We will always ask your permission for them to observe your appointment.
After your appointment
Following your first appointment, we will decide on a treatment plan and let you know what this is. If your child needs to have another outpatient appointment, our outpatient team will be in touch to book this with you.
We will send letters about the outcome of your appointment to you and any healthcare professionals involved in your child's care.
If we decide that your child needs to have an operation, we'll make a plan for when your child will be admitted to hospital. Your child will need to come to our pre-admission clinic before their operation. A clinical nurse specialist will stay in touch with you throughout your child's treatment.
We invite children back to our clinics to check on their progress at three, five, 10, 15 and 20 years of age. This is usually an all-day clinic where your child may see a speech and language therapist, clinical psychologist, clinical nurse specialist, medical photographer, orthodontist (if needed) and audiologist. There will then be a group review at the end to discuss the day and answer any questions you or your child may have.
Our cleft nurse specialists will telephone you within 24 hours of receiving the referral from the ultrasound department.
They will arrange to meet up and give you information about the cleft service and to answer any questions you have. They will also:
- give you some Cleft Lip and Palate Association (CLAPA) publications 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.
We will also arrange to see you about six weeks before the birth, to discuss feeding. A feeding plan will be worked out and written into your antenatal notes.
This is also a good opportunity to ask any remaining questions and talk about any feelings you may have about seeing your baby for the first time.
When the diagnosis is made at birth or after, a cleft nurse specialist should contact you within 24 hours of the referral to arrange a visit.
When we visit, we will carry out a feeding assessment and help and support you with whatever method of feeding you choose. We work closely with the nursing and medical staff in the maternity unit at St Thomas' Hospital.
We will be involved with your baby's care while they are in hospital. We will also see you at your home after you leave hospital, to support you with feeding and monitor your baby's growth. We provide specialist support in addition to your midwife and health visitor.
In the UK, most centres work to the same plan:
These are both done under a general anaesthetic and your child will usually be in hospital for one to two nights after their surgery.
Download our leaflets to find out more about care pathways for children born with a:
Before surgery pre-assessment clinics
Before their operation, you will be asked 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 will make sure your child is fit for their general anaesthetic. You will also be given information about what will happen on the day of your child’s operation before their hospital stay. You and your child will get the chance to ask any questions you want.
Find out more about pre-assessment clinics.
Staying the night
Patients up to 16 years old who live very far way and will struggle to arrive on the ward by 7.30am on the day of the surgery, may be able to stay in Gassiot House the night before surgery. Depending on your home address and subject to availability, we offer accommodation for patients and one family member or carer at Gassiot House the night before the operation.
You may also be eligible to stay at the Ronald McDonald House Evelina London. Most rooms in the Ronald McDonald House sleep up to four people, however some can accommodate up to six people.
For patients under 16 years old who are staying overnight on a ward in Evelina London Children’s Hospital following surgery, there is usually space for one parent or carer to stay on the ward although this cannot be guaranteed.
Read more about staying with you child.
We visit babies and children when they are inpatients at Evelina London to offer you advice and support about feeding and caring for your child after the operation.
A nurse specialist will also see your child one week after surgery and with the rest of the team in the cleft clinic six to eight weeks after surgery.
Joint clinics with the 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 speech and language therapy, dentistry and orthodontics and psychological support. Find out more about the other cleft services available.