The Newcastle Cleft Lip and Palate Team is made up of several different members. The team members all have different parts to play in the care of babies, children, young people, and their families. We also offer services to adults. We hope that you will have a chance to meet most of the team members when you come to clinic. We think that seeing everyone helps us to offer the best possible care. If there is any team member you would not wish to meet please let us know before you come to clinic.

Patients will be reviewed by the cleft team at regular intervals. The exact timing of this will depend on the age of the patient. 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 two 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.

The cleft team runs clinics in different hospitals around the region from Middlesbrough in Teesside to Workington in Cumbria. Please look at your appointment letter to find out where to go for your appointment with the team.

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.

Sometimes the team will have travelled a long way to get to the clinic. We hope that you will understand if there are delays due to traffic problems or bad weather.

Cleft specialist nurses

There is a team of nurses for the Northern and Yorkshire Region. If you have had a baby since the new service began you will already have met one of the nurses. 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 clinic appointments the nurse from your area will be able to help you organise this with your GP.

During your clinic visit 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 at the clinic 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.  If concerns are mentioned in clinic they can be talked about at clinic or a later appointment can also be offered if this is preferred.

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, plastic surgery

Mr Hodgkinson is the team’s cleft lip and palate surgeon and he is in every clinic. He will look at patients’ faces and sometimes inside their mouths.

It is Mr Hodgkinson’s job to:

• 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 an operation is needed, Mr Hodgkinson will do it at the Royal Victoria Infirmary in Newcastle. Just before the operation, he will talk through what he is going to do during the operation. Patients and families will also meet the consultant anaesthetists at this time. Mr Hodgkinson will meet patients and families in clinic again a few weeks after the operation to check that all has gone well.

Genetics team

A genetics doctor and nurse form another part of the cleft 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

There is a specialised sort of dentist called an orthodontist. They (and sometimes your local orthodontist too) will be at every clinic. Their job is to look at the positions of teeth and the jaws to see how they are growing. Sometimes children with clefts need braces (orthodontics). Braces are needed at different times for children with different kinds of clefts, but is generally not started before the age of ten. The orthodontist will make sure that any braces that are needed are provided locally by a specialist.

Paediatric dentist

A healthy mouth is good for every child.  It is even more important for a child with a cleft of the lip or palate.  Sometimes teeth may be missing, in the wrong place or of the wrong shape.  The role of the paediatric dentist is to try and help prevent dental diseases by encouraging your child to eat and drink the right types of foods and drinks.  Keeping your child’s mouth clean helps keep their gums healthy too.  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.

Photographer

Medical photography is undertaken in all clinics to keep patient records up to date and accurate.  Each time the patient 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.  These pictures become part of that person’s clinical record; they are bound by the same protection and confidentiality requirements as the rest of their medical notes.  Pictures could also be used to educate junior medical staff about clefts or to help other cleft patients and their families.  Consent will always be obtained from the patient, or their parent and is optional.

The photographs we take can be helpful to different members of the team, because of this the photographs can vary.  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 they will monitor their speech development regularly. Sometimes they may take you and your child into another room so that they can find out more about his/ her speech.

They can tell you about:

• Speech development
• What can happen to speech when someone has a cleft palate
• How to help your child’s speech development

How can I contact the team?

Telephone the Cleft Lip and Palate Team at the Royal Victoria Infirmary on (0191) 282 0660, 9am to 5pm, Monday to Friday.
 

The Cleft Lip and Palate Association offers advice and support to individuals and families. They have local representatives who can be contacted through their head office on 020 7431 0033 or through their website at www.clapa.com.