The Cleft Team and Clinical Psychology
This section explains why Cleft Teams include Clinical Psychologists, an overview of common psychological concerns related to cleft, as well as an explanation of the things that a Cleft Team psychologist can help with.
Why do Cleft Teams have a Clinical Psychologist?
- Clinical Psychologists are there because they know having a cleft means having to face significant experiences others would not usually have to. This includes things common to almost everyone with a cleft, like frequent appointments and/or surgery. It also includes anything else that may have happened in someone’s life related to their cleft. For example, treatment not going as planned, or experiences of bullying.
- In some Cleft Teams, returning adult patients will see a Clinical Psychologist as part of the standard care pathway. This is to make sure you have an opportunity to discuss the feelings (past and present) you have about your cleft and related care, and to think about how further treatment such as surgery may affect you.
If you would like professional help to cope with feelings about your cleft or the reactions of others, you may be able to get support from the Clinical Psychologist with your Cleft Team.
This can include short sessions to develop strategies for coping and decision-making, as well as long-term therapy. The Clinical Psychologists attached to the Cleft Teams are specialists and can offer a range of talking therapies to help patients, parents and even families through any difficulties they may be having linked to cleft.
Common issues Clinical Psychologists deal with include:
- how to answer other people’s questions and comments
- appearance concerns
- confidence and self-esteem
- bullying and teasing
- decision making and treatment planning
- support around surgery
- anxiety, worries, and low moods
General Mental Health
This section provides an overview of general mental health conditions, as well as support services. General mental health conditions may be made worse by your cleft-related experiences, but are not usually caused entirely by having been born with a cleft.
I have (or think I may have) a mental health issue. Can the Cleft Team Clinical Psychologists help?
- A mental health issue impacts greatly and consistently on someone’s life. It usually means a recognised group of symptoms that, when seen together, are given a diagnosis like ‘anxiety’ or ‘depression’.
- Whether or not this is something the Cleft Team Clinical Psychologists 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 that 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 Team Clinical Psychologists would offer 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 (general anxiety) would therefore be provided by a local mental health team or talking therapies service.
- The best way to access this kind of general support is by talking to your GP.
- You also may be able to self-refer by searching ‘NHS Talking Therapies’ online.
- If the issues you experience are very serious (e.g. if you are risk of harm), the Clinical Psychologist with the Cleft Team will always refer you to an appropriate mental health team who can give you more frequent, closely-managed care.
Get a Referral
All Cleft Teams should have a Clinical Psychologist, though it may be that adult patients are only seen in local spoke clinics.
The kind of support you get will depend on your individual needs and circumstances. If you are not already under the care of a Cleft Team, you’ll need a referral from your GP before you can get talking therapy.
If you are under the care of a Cleft Team, call and ask to talk to the Clinical Psychologist. They will talk with you about your needs and decide with you what the best option is. This may be a face to face appointment or a referral to another service that can provide more appropriate and/or local support.
Bullying & Discrimination
Bullying is an unfortunate fact of life for many young people, especially those who are different in some way. What doesn’t get as much attention are those who never stop experiencing bullying and discrimination, even as adults. It may not even be something you’d think to call bullying, but if someone is deliberately made to feel bad about themselves through comments, rumours, exclusion or even physical contact like hitting and shoving, it still counts and it’s something that should be taken seriously. Even if the person at fault means well with their comments or questions, it can still be hurtful and shouldn’t be ignored.
Facing bullying as an adult can be devastating, and what can make it worse is that victims of adult bullying are often afraid to speak out for fear of ridicule or not being taken seriously.
You may wish to talk to other adults with a cleft in our Adult Voices Facebook group, or talk one-on-one to a Peer Contact.
Discrimination at Work
It is against the law to discriminate against anyone on the grounds of any ‘protected characteristic’ such as age, gender, sexuality, religion, disability, race, and so on.
‘Facial disfigurement’ became classed as a disability under the Disability Discrimination Act in 1995 and continues to be seen as such under the Equalities Act of 2010, and so to discriminate against someone based on a disfigurement would be against the law. Having a cleft may not be something you see as a disability or even a disfigurement (this is not a term CLAPA generally uses, but other charities like Changing Faces use it, partially because of its legally protected meaning), but if you believe someone is discriminating against you on the grounds of how your cleft makes you look, they may be breaking the law.
Each employer should have their own bullying and harassment policy which should be freely available. If not, ask your HR department.
In the Equality Act 2010, harassment is defined as “unwanted conduct related to a relevant protected characteristic, which has the purpose or effect of violating an individual’s dignity or creating and intimidating, hostile, degrading, humiliating or offensive environment for that individual.”
If you feel like this is happening to you, follow your employer’s bullying and harassment policy, or find help and advice on the following websites:
Interpersonal relationships are a really important topic for people born with cleft. Our ability to have good, healthy relationships with other people is fundamental to our enjoyment of life and how we see the world. We know from the previous research that relationships with family, friends, partners, boyfriends, girlfriends, strangers etc. can all be influenced in both positive and/or negative ways by cleft. Our podcasts look further into this and discuss some of these issues.
Do people born with a cleft normally have issues with emotional wellbeing?
- Everybody born with a cleft will have different experiences, so there is no ‘normal’ way that being born with a cleft will impact someone.
- Some people do not feel their cleft has any significant impact on their life, whilst others find it very challenging. Some may have found it difficult only at certain times or around particular events like surgery, whilst others may have found it consistently hard.
- If someone’s cleft does affect their wellbeing, the exact way it affects them will vary. For example, someone might worry that others will judge them negatively because of their cleft, meaning they feel very 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.
- As having a cleft often does present challenges, it is entirely 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 is very important to your emotional wellbeing.
What kind of issues do Clinical Psychologists in the Cleft Team support?
- The Clinical Psychologist can offer support for any psychological or social issues related to your cleft. Common issues include:
- 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/bullying
- Coping with difficult past experiences (e.g. surgery, social experiences)
- Confidence and self-esteem
- Cleft-related difficulties in work/education
What if I’m not sure whether my cleft is related to my mental health issue?
- If you are not sure whether your cleft is significant to your mental health issue, the Cleft Team Clinical Psychologists would be happy to see you to discuss this, and whether it would best be supported inside or outside the Cleft Team.
- If you suspect a problem 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. Check the NHS website for 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.
I would like to see or speak to one of the Cleft Team Clinical Psychologists. How do I do this?
- Use the map in this pack to find your nearest Cleft Team, or visit com/cleftteams. Once you have found your local team, contact the coordinator who will be able to advise you on how to do this.
What are some signs that I might be having an issue with my mental health?
- 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 include:
- Difficulty with mood e.g. feeling low, angry, anxious a lot of the time
- Difficulty doing things you need to in your daily life e.g. work, education, social activities
- Difficulties with relationships
- Difficulties with or changes to sleep and/or eating
- Using drugs and/or alcohol to cope with problems
How can I receive support for my mental health?
- Talk to someone you know and trust about it.
- Talk to your GP if you would like to receive professional support. They can tell you about the services available in your area. You can also find local services on the NHS website or by searching ‘NHS Talking Therapies’ online.
- Look through self-help material on ntw.nhs.uk/selfhelp/, which has a great selection of resources on a wide range of mental health issues.
- For 24 hour support, call Samaritans on 116 123 for their free counselling service.
- 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)
- Search for ‘NHS Mental Health Crisis’ for local phone 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
What services do CLAPA provide to support emotional wellbeing?
- Peer Support Service: Talk or email with a trained volunteer one-to-one. These volunteers were born with a cleft and are experts by experience. They will be happy to talk to you about any questions or concerns you may have, from getting back into treatment to coping with comments.
- Online Facebook Support Group: Our Facebook group for adults born with a cleft has over 2,000 members. Every day, they swap stories and photos, share highs and lows, and help us ensure that no one has to go through the difficult times alone. com/groups/CLAPAAdults/
- Events: CLAPA organises a variety of events for the cleft community. Visit clapa.com/events to see what’s on.
- Information: CLAPA publishes a great deal of information on topics related to cleft, including mental health, and aims to make these as accessible to people as we can. Visit com/treatment for our online information resources.