Our service is provided by Newcastle Hospitals at the RVI, but we provide care for patients and families across the North East, Cumbria and Northern Yorkshire Border.
We are one half of the Northern and Yorkshire Cleft Service, and we work closely with our sister hospital in Leeds.
Our service
We provide:
- One service for all patients with a cleft, from antenatal care through to adulthood.
- Care for patients with speech difficulties, including those with no obvious cleft.
- Counselling support throughout the diagnostic process.
- Specialist nursing input for cleft identification, feeding assessments, airway management referrals, and pre-operative and post-operative support.
- Specialist dental and orthodontic input.
- Full multidisciplinary team clinics.
Our service is delivered by an experienced team of specialists from a range of clinical disciplines to ensure that all the care needs of our patients are met. Care is tailored to each individual, with input from different professionals provided according to their specific requirements.
How can you access the service?
New babies
Babies born with a cleft, or those diagnosed antenatally, are automatically referred to the cleft service by the consultant or healthcare professional responsible for their care.
Once a referral has been received, a cleft specialist nurse will assess and confirm the diagnosis before registering the baby with the service.
Once registered, patients remain under the care of the cleft service until all planned primary and secondary surgeries have been completed.
Transfer of care
If you or your child move to a different area and are already receiving care from another cleft service, your care will usually be transferred automatically.
Once the transfer request has been received, you or your child will be assigned a new cleft specialist nurse, who will contact you by telephone to discuss ongoing care and arrange a home visit if required.
Re-accessing the service
If you are an adult who would like to return to the service to discuss further treatment, you can contact our administration team to check whether you are still registered with us.
If you are no longer registered, you can make a self-referral.
Who is part of the team?
Cleft specialist nurses
There is a team of four cleft specialist nurses for the Northern Region. We aim to see you and your baby within 24 hours of their birth or we may have met earlier if your baby was diagnosed on a scan during pregnancy. We aim to support you and your family through the first few weeks of the baby’s life with advice on feeding and weaning.
If you need help with transport for your face-to-face clinic appointments the nurse from your area will be able to help you organise this with your GP.
During your face to face or telephone appointment you will have the opportunity to talk with the specialist nurse who will answer any questions and advise you on who would be the best person to answer more specific queries.
Clinical psychologists
There will be a psychologist present at most clinics. The psychologist’s job is to understand and talk through the concerns young people and families have about their cleft lip or palate.
You can discuss concerns at clinic or at a later appointment. Examples of the sorts of things a psychologist can help with are:
- Concerns about appearance
- How to deal with the reactions of others
- Worries about hospitals and treatments
- Dealing with teasing and bullying
- Making decisions about treatments and the future
- Any other worries about the cleft lip or palate
Consultant Cleft and Plastic Surgeons
The team’s cleft lip and palate surgeons will look assess your child and will:
- See what operations could help with appearance.
- See what operations could help with the part of the palate that is used for speech.
- Explain operations to parents and children so that they understand why an operation has been suggested and what will happen.
If your child needs an operation this will take place at the Royal Victoria Infirmary.
Just before the operation, they will talk through what they are going to do during the operation. Patients and families will also meet the consultant anaesthetists at this time. Our surgeons will meet patients and families in clinic again a few weeks after the operation to check that all has gone well and then regularly over the years as the patients grow.
Ear, Nose and Throat Surgeons
A cleft palate can be associated with problems with hearing because of glue ear.
You will see an ENT surgeon at a hospital near to you to help with any problems your child is having with hearing.
Genetics team
The genetics team routinely review the photographs and clinical histories of all children with a cleft. This is to help the team work out why that child was born with a cleft.
The genetics team can help with questions some patients ask such as:
- Why was my child born with a cleft lip/palate?
- What are the chances of us having another child with similar problems?
- What are the chances of my child having children with a cleft?
- Is there anything I can do to prevent it happening again?
- What are the advantages and disadvantages of having detailed ultrasound scans during pregnancy?
- I have a cleft myself, what are the risks of it happening in my children?
- What, if any, investigations can you offer me in a pregnancy?
Orthodontist
An orthodontist will look at the position of the teeth and the jaw to see how they are growing.
Braces are needed at different times for children with different kinds of clefts, but is generally not started before the age of ten.
Paediatric dentist
The role of the paediatric dentist is to try and help you prevent dental diseases by encouraging your child to eat and drink the right types of foods and drinks.
The paediatric dentist will work with your own dentist to maintain the teeth and gums so that the orthodontist, speech therapist and surgeon can treat your child effectively.
You will be encouraged to attend your family dentist for regular appointments as well as seeing the dentist at your cleft clinic appointments.
Photographer
Medical photography is undertaken in all clinics to keep patient records up to date and accurate.
Each time your child comes to see the cleft team the photographer will also be present, and patients will be asked if they would mind having some photographs taken.
The pictures are incorporated into medical case notes to help in the planning and assessment of clinical treatment.
Photographs could be required of the following areas:
- Face and inside the mouth (palate) – for the surgeon to check the progress of a cleft repair
- Teeth – for the orthodontist and the paediatric dentist to assess oral health and decide on a course of treatment.
- Hands and feet – for the geneticist to find out more about the patient, and perhaps pick up subtle clues that can help with a diagnosis.
Additional photographs may be taken with a camera that takes a 3D image of the patient’s face. This can help the team look at any facial changes or growth.
Speech and language therapy
The speech and language therapists with the cleft team will be at all the clinics.
If your child has a cleft palate, or speech problems related to how well their palate is working even when there is no cleft palate, they will monitor their speech development regularly.
They can tell you about:
- Speech development
- What can happen to speech when someone’s palate is not working well enough
- How to help your child’s speech development
If it is decided that your child would benefit from a videofluoroscopy (talking x-ray assessment) then this will be arranged in clinic.
How often will an appointment be necessary at the clinic?
You child will be reviewed by the cleft team at regular intervals. The exact timing of this will depend on the age of your child.
After the initial contact with the team’s nurses within 24 hours of birth, the whole team usually sees newborn babies and their parents within the first few weeks of their life.
This gives parents the opportunity to meet all of the team and to take a role in making decisions about treatment and support. It also gives parents a chance to get more information and to have their questions answered.
Older babies, children and young people will usually be seen at regular intervals which can vary between six months and several years depending on the needs of the individual.
Adults will be seen in clinic in order to assess whether any further treatment or support would be helpful. Clinic appointments will then be made to help with planning or reviewing this treatment or support.
How long will the appointment take?
We will try to make your visit to the clinic as efficient as possible. However, seeing a lot of different team members takes time. We also try to split into small groups when we see patients and their families so that there are as few people in clinic rooms as possible. This means that you will have lots of different conversations with the different team members. As a rough guide please allow yourself at least two hours for a clinic visit.
Further Information
Additional Support
Patient Advice and Liaison Service (PALS)
PALS can provide help, advice and information about NHS services.
Telephone: 0800 032 0202
Email: [email protected]
Text: 01670 511 098
