Emotional wellbeing and mental health

Everyone born with a cleft will have different experiences, so there is no ‘normal’ way this will affect someone.

Some people don’t feel their cleft has a significant negative impact on their life, whilst others find it very challenging. Some may have found it difficult only at certain times, or around particular events such as surgery, whilst others may have considered it to have impacted their lives more broadly.

If someone’s cleft affects their wellbeing, the exact way it affects them will also vary. For example, someone might worry others will judge them negatively because of their cleft, leading to them feeling anxious when meeting new people. Another person may not worry about this but struggle daily with the frustration of others not being able to understand their speech.

Because having a cleft can present challenges, it is completely understandable if you do experience difficult thoughts and feelings. Nobody in the Cleft Team will judge you for this and, importantly, you should not judge yourself either. Talking about these things can be very helpful for your emotional
wellbeing.

There are many different symptoms of mental health issues, and the presence of any of these does not necessarily mean there is a problem.

Signs you might have an issue with your mental health can include:

• Difficulty with mood e.g. feeling low, angry and/or anxious a lot of the time.
• Difficulty doing things you need to do in your daily life e.g. work, education, social activities.
• Difficulties with relationships.
• Difficulties with or changes to sleeping and/or eating.
• Using drugs and/or alcohol to cope with problems.

Mental health issues can impact different areas of one’s life significantly. A ‘mental health issue’ usually means a recognised
group of symptoms that, when seen together, are given a diagnosis such as ‘anxiety’ or ‘depression’.

Whether or not this is something the Cleft Clinical Psychology team would help with depends on if you feel it is related to your cleft.

For example, if someone experiences a high level of anxiety when meeting people, with the main worry being they will be judged negatively because of their cleft, the cleft is a clear part of the concern. This concern (cleft-specific social anxiety) is something that the Cleft Clinical Psychology Team would therefore
consider offering support for.

If someone experiences the same level of anxiety, but mostly in situations unrelated to cleft (e.g. worrying that every task in their daily life will go wrong somehow), the cleft is not a clear part of the concern. Support for this concern (generalised anxiety) may therefore best be provided by a different service such as a local mental health team or talking therapies service.

The best way to access general mental health support is by talking to your GP. You may also be able to self-refer by searching for appropriate NHS mental health services.

If the issues you experience are very serious (e.g. if you are at severe risk of harm), the Cleft Clinical Psychology Team will always refer you to an appropriate mental health team who can give you more frequent, closely managed care.

• Talk to someone you know and trust about it.
• Check out self-help material on the NHS website to find resources on a wide range of mental health issues.
• For professional support, talk to your GP or find local services on the NHS website.
• For 24 hour support, call Samaritans on 116 123 for their free counselling service.

CLAPA also has a range of services which can support your emotional wellbeing and help with mental health issues like anxiety and depression, but we are unable to support with complex mental health issues.

If you think you are having a mental health crisis and need urgent help:

• Call your local crisis number (if your local mental health team has already given you one) or search the NHS website for local crisis numbers and resources.
• Contact your GP and ask for an emergency appointment
• Call NHS 111 (for non-life-threatening
  concerns) or 999 if you think your life may be at risk

CLAPA offers a range of support services and resources to support your emotional wellbeing. These include one-to-one support
services, groups, events, online videos, podcasts and other information.

These services are free of charge and are open to all adults in the UK who were born with a cleft.

A ‘visible difference‘ is a mark, scar or a medical condition on your face and body which makes you look different to others.

If you’ve had a cleft lip repair, chances are you will have a visible scar that makes you look a little different to other people. The shape of your nose and your facial profile may also be affected. If you were born with a cleft that affects your gums you may have noticeably irregular teeth. These can all be ‘visible differences’.

This depends entirely on the person. There is no right way to feel about having a visible difference.

Some people see it as a fundamental part of who they are and would never want to change it. Others are very self-conscious about it and find it negatively affects their self-esteem.

This isn’t necessarily to do with how ‘extreme’ or ‘obvious’ a visible difference is – sometimes, people with quite minor scarring can be the most self-conscious about it, and people with very clear differences can cope exceptionally well.

• CLAPA has a range of support services and events for people with a visible difference like cleft.
• The Visible Difference Support Hub has collected together a number of resources and support services for people with a visible difference. These include podcasts, e-books, an app, a board game, videos, websites and downloadable booklets.
• Changing Faces is a UK charity supporting and campaigning for people with a visible difference. They have a lot of information and support available on their website.
• There is a list of other resources and support services, including apps and helplines, at the end of this page.

Being born with a cleft often means having to face experiences others would not usually have to, such as frequent hospital appointments and/or surgery.

It may also involve treatment not going as planned, receiving negative comments or having challenging interactions related to
your cleft.

In some Cleft Teams, returning adult patients will see a Clinical Psychologist as part of the standard care pathway. This is to ensure you have the opportunity to discuss the feelings (past and present) you have about your cleft and related care, to discuss your hopes and expectations of further treatment, and hear about the role of psychology and options for support, if appropriate.

The Clinical Psychology team within a cleft service offers support for any psychological or social issues related to being born with a cleft.

• Common issues or concerns include:
• Difficult feelings about being born with a cleft
• Feelings about treatment (i.e. decision making, expectations, anxiety)
• Difficulties in social situations or relationships (e.g. social anxiety, feeling ‘different’)
• Coping with comments and questions
• Coping with teasing and bullying
• Coping with difficult past experiences (e.g. surgery, social experiences)
• Impact on confidence and self-esteem
• Cleft-related difficulties in work/education

The Cleft Clinical Psychology Team can discuss this with you and take time to understand whether your concerns would best be supported by their team or another service.

If you suspect an issue is probably not related to your cleft, it is a good idea to seek a referral to your local mental health team as soon as possible, either online or
through your GP. This is because some mental health teams have a long waiting list, so waiting until after you have seen the Cleft Team to join this list would mean a longer wait.

You may also be able to self-refer to some local mental health services. See the NHS website for more details.

Unfortunately, the Cleft Team Clinical Psychologist cannot make a referral to a mental health team any faster than your GP or by self-referral.

You need to get a referral to your local Cleft Team.

Once you’re under a Cleft Team’s care, you should be given the contact details for the Cleft Clinical Psychology Team or you can raise this at your next appointment.