https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/moving-to-adult-cleft-services/

Moving to adult cleft services

Information about how we will support you to gradually take more ownership of your cleft care as you move from children’s to adult services.

It explains how your care will transfer from Great Ormond Street Hospital (GOSH) to the Royal London Dental Hospital and/or Broomfield Hospital.

If you have any questions, please speak with your team.

What does preparing for adult cleft services involve?

Preparing to move from children’s to adult services is a gradual process and an important time in your life. This process is sometimes called transition.

It is not a single event, but something that happens over several years as you grow older. The aim of transition planning is to help you build the knowledge, confidence, and skills you needed manage your cleft care as an adult.

We understand that change can feel worrying at times. Our aim is to provide you with clear information and support, so that you feel confident and prepared. We will work with you to help you become more independent and involved in making decisions about your treatment, at a pace that feels right for you. We will help you prepare by offering opportunities to meet members of the adult cleft team before transfer.

When and why does transition of care to adult services happen?

Your GOSH cleft care team will discuss transition planning with you to make sure there is a coordinated plan in place and that you’re ready for adult services when the time comes.

The service you are under at GOSH is called the North Thames Regional Cleft children’s outpatient service. This runs from birth until your 21st birthday.

If you are still having cleft care at GOSH when you become an adult, your cleft team will make sure your care is transferred to an NHS adult cleft team. They will discuss this with you in advance to make sure the move is as smooth as possible and that there is no gap in your care. GOSH policy states that you cannot have surgery as an inpatient at GOSH after you turn 19 years old. This is another reason why it is important your care is moved to adult services.

What if I completed my cleft care when I was younger?

If you completed your cleft care in childhood or as a teenager, you are still entitled to specialist assessment under an NHS Cleft Team at any age. This means that if you are interested in receiving further cleft-related treatment, you will be able to access NHS specialist cleft services at any point.

If you need treatment in the adult cleft service, you can ask your local dentist or GP to refer you to your local adult cleft team. To get a referral from your GP or dentist, tell them you would like to be referred to your local Cleft Team for specialist assessment.

Where will I go for adult care and how will the transfer happen?

Your care will transition from GOSH to the North Thames Cleft Network’s adult services.

You may be seen at:

The Royal London Dental Hospital, Whitechapel, London (Barts Health NHS Trust). Usually for cleft surgical and dental treatments.
St Andrew’s Centre for Plastic Surgery, Broomfield Hospital, Chelmsford (Mid and South Essex NHS Foundation Trust). There is a multidisciplinary cleft clinic here that covers surgery, orthodontics, speech therapy, audiology, and psychology.

The hospital you attend will usually depend on where you live and the treatment you need. As part of preparing you for adult services, your cleft care team will talk this through with you and establish which adult service is best suited to your care.

In some cases, you may be seen in a face-to-face transition clinic and have a joint appointment with both children’s and adult services.

Can my parents/carers still attend appointments with me in adult services?

Once your care transfers to adult services, you will be encouraged to take a more active and independent role in your appointments. However, we recognise that parents and carers often continue to play an important part in supporting you.

If you would like a parent, carer, or family member to join your appointments, they are very welcome to do so.

Over time, you may choose to attend some or all of your appointments on your own, but this will always be your decision, and the team will support you at your own pace.

Who will be in the adult cleft team?

The adult cleft team includes the same type of specialists who cared for you under children’s services. This includes:

Oral and Maxillofacial surgeons
Plastic surgeons
Orthodontists*
Restorative dentists**
Speech and language therapists
Geneticists
Audiologists
Psychologists
Specialist nurses

They will be able to:

Discuss any cleft-related concerns.
Monitor your cleft care and provide treatment if it is needed.

*The adult cleft service cannot provide long term maintenance of your orthodontic retainers. You will need to see your local dentist or local specialist orthodontist if you need replacement retainers.

**The adult cleft service cannot provide you with routine dental care, so you will still need to continue seeing your local dentist for this.

More about these teams

Speech and Language Therapy team

The Speech and Language Therapy team for adults is based at Broomfield Hospital. It provides both assessment and therapy for cleft-related speech difficulties.

Detailed speech assessments are offered if there are concerns around air leaking down the nose during speech and giving speech a nasal quality.

The speech and language therapy team also provides therapy for cleft-related pronunciation (articulation) difficulties. Depending on your needs, therapy sessions may take place face-to-face or online.

If you are considering jaw surgery, you may be offered speech assessments even if you do not currently have concerns about your speech. These assessments help check whether there is any risk of your speech becoming more nasal after surgery. The risk of speech changing after jaw surgery is usually low, but it is still important to weigh up.

You may also be invited to meet with a clinical psychologist, who can support you with decision-making and preparation for surgery. We will try to arrange all these appointments on the same day where possible. The results of your assessments will be shared with you and your maxillofacial team to help you decide whether surgery is right for you.

If you do have jaw surgery, you will be invited back for routine follow-up assessments around six months afterwards.

Psychology team

We understand that having a cleft lip and/or palate, and going through treatment, can sometimes be challenging.

At different points along your journey, there may be decisions to make about further treatment or surgery, and our psychology team is here to support you.

Psychology support can help with:

making decisions about treatment or surgery
preparing for assessments or procedures
managing worries or anxiety related to treatment
thinking about changes to your appearance
concerns about confidence, self-esteem, or social situations

These concerns may be long-standing or may be new. Our psychology team can support you with any cleft-related emotional or psychological concerns.

We offer evidence-based psychology support, either face-to-face at Broomfield Hospital or via video.

Audiology team

For most people with a cleft palate (with or without cleft lip), hearing and middle ear problems improve as they get older. Because of this, you might have hearing checks less often as you move into adolescence (from around 10 years onwards) and adulthood.

However, a small number of people may continue to have hearing or middle ear difficulties and will need ongoing follow-up.

If this applies to you, your care team will identify this early and make sure you are supported. Ongoing hearing care is usually provided by your local audiology or ENT (ear, nose and throat) service, with referrals arranged as needed.

If you have any concerns about your hearing or your ear health at any time, please let your cleft team know so the right support or referrals can be put in place.

A cleft audiologist is available at St Andrew’s Centre, Broomfield Hospital, and an audiovestibular physician at GOSH can also provide specialist advice. Any treatment you need will usually take place at your local or regional audiology or ENT service.

Genetic testing team

The causes of cleft lip and palate vary from person to person, and it is not always easy to predict.

Genetic testing looks at whether there may be a genetic reason for a cleft. It can also help you to know the chance of any possible future children having a cleft. This usually involves talking through your family and medical history, and in some cases, having further tests.

Genetic testing and counselling are optional. If you would like to find out more or feel this might be helpful, please speak to your cleft team who can arrange a referral.

What happens if I move house or location?

If you move to a new location within the UK, you can move your cleft care to the NHS Cleft Team most local to you. You will need to register with a GP in your new area and ask them to refer you to the local Cleft Team.

Further information about the NHS Cleft Teams in the UK can be found on the CLAPA website.

If you move overseas, the access to cleft care will depend on the health system in that country.

Further information and support

The Cleft Lip and Palate Association (CLAPA) is a charitable organisation for all people with and affected by a cleft lip and/or palate in the UK. For more information about accessing adult services you can access CLAPA’s website

The Craniofacial Society of Great Britain and Ireland (CFSGBI) is a multidisciplinary society of individuals committed to improving the clinical care of children and adults with cleft lip and/or palate and other craniofacial anomalies.

Changing Faces is another organisation that will be able to offer help and support to anyone living with a condition that affects their appearance.