About NHS Cleft Services

A Cleft Team should be made up of the following cleft specialists:

• Cleft Surgeons
• Paediatric Anaesthetists
• Specialists in Paediatric Dentistry
• Consultant Orthodontists
• Specialist Speech and Language Therapists
• Consultant Paediatricians
• Consultant ENT (Ear, Nose and Throat) Surgeons, Audiological Physicians and/or Paediatric Audiologists
• Consultant/Clinical Nurse Specialists (often called a ‘Cleft Nurse’)
• Clinical Psychologists
• Consultant Restorative Dentists
• Consultant Clinical Geneticists

The specialists in each team, as well as where they are based and what they do, will vary from place to place.

Like most NHS specialist services, Cleft Teams usually need a referral from another service like a GP or midwife in order to take on new patients.

Newly diagnosed babies, and expectant parents who have just received a diagnosis, should be referred to their nearest Cleft Team very quickly, usually within 24 hours.

Older children with a late diagnosis of cleft palate may get a referral from their GP, speech therapist, or another medical professional who made the diagnosis.

Adults or anyone who has left the service will usually need to get a referral from their GP or dentist for further specialist treatment. Some teams accept self-referrals; see more information on individual teams.

CLAPA is not able to fund travel or accommodation costs for healthcare.

The NHS has a ‘Healthcare Travel Costs Scheme‘ which can help those struggling with the costs of travelling to their Cleft Team. This is part of the NHS Low Income Scheme. There is specific information for families in Scotland and Northern Ireland.

The Ronald McDonald House Charity has a number of houses near children’s hospitals around the UK where families can stay while their child is having treatment. If there are none available, it’s worth contacting your Cleft Team or the hospital admin team to see if they have links with local hotels or other accommodation providers who may be able to give low or no-cost accommodation to families like yours.

This depends on your specific circumstances and if you are eligible for NHS care.

See gov.uk for more information.

You will need to arrange this with the private clinic or hospital directly.

CLAPA cannot give recommendations of private surgeons or clinics providing cleft care in the UK. However, a good starting point is to look at the specialist surgeons with the NHS Cleft Teams listed above and searching to see if they have a private practice available.

The NHS website has information on how to plan your healthcare when moving abroad.

Make sure you talk to your Cleft Team about your plans, especially if you or your child is having ongoing treatment.