Cleft Lip and Palate

Over the past 15 years there has been a significant reorganisation and centralisation of UK cleft services, to improve standards and outcomes of care.

A new study has found that the reorganisation of NHS services for children in the UK with cleft lip and palate has improved standards of care. Moreover, this centralisation of cleft services has enabled a co-ordinated approach to research in this area, which in turn informs and improves health care.

This improvement in care has been highlighted in the news recently - healthcanal.com/child-healt...

In light of this media attention, we would be really interested in hearing your stories about any experiences you may have of cleft care in the UK, or abroad... :)

5 Replies

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  • I am 52 years of age. I have found having a cleft lip and plate very life damaging

    Education:- I have self funded the majority of my professional development CV

    One teacher tried her best to have me placed in a 'unit' for individuals with profound learning disabilities, using my class mates aswel which taught them to view those with a visual difference as 'retarded'.

    Earning potential; Obviously adversly affected

    Personal relationships: I have no friends in the area I grew up in

    Family relationships: I do not bother with my own family. They have treated me with unreserved contempt over the decades.

  • I am 22 and had a cleft palate. Thankfully when i had mine fixed i was able to have a very skilled doctor who fixed it in one operation, I have never had to have speech therapy an never had an learning difficulties because of it. My mother did say though that back then there really was a huge lack of information and help available, especially as she had massive trouble feeding me and no support was there. 2 years ago I had my son. I genetically passed on the defect and he had the exact same, 'absence of the soft and hard palate', This time round, the support we got from the hospital straight away was amazing. Me and my partner had brilliant help in getting used to feeding etc so we were confident once we were home. His operation went very well and it has healed spectacularly. On his year after check up, they said no more operations would be needed. It is incredible how the knowledge, acceptance and support available has changed over the years.

  • I am delighted to read that your youngsters life chances are so enhanced. Do not hesitate to use all help available. There are some fantastic therapists out ther. Keep an open mind. The next mine field is education. You can always supplement by buying in extra help. Take care

  • A nice article -

    “WE found out at our 20-week scan that our son was going to be born with a one-sided cleft lip and palate. It was our first baby..." click on the link below if you want to read on.

    thestar.co.uk/news/health/h...

  • There is of course a charitable organisation dedicated to cleft and palate issues. it is only in recent years that CLAPA woke up to fact that some people with the condition, rather than just their parents, might welcome support and information and a chance to meet others in like situation. You will find it on facebook, e.g. facebook.com/groups/CLA... and there is a similar organisation in the USA. The best academic paper I found about psychological effect reviewed a lot of different previous papers. It could find no significant difference between cleft lip and palate children and the rest of the population. Frustrating really, as there must be effects, but it will depend so much on how positive and constructive family and school can be, and the individual's own leanings. I think a lot more research is needed. I am glad that a child born today can be treated in such a way that they think no further operations will be needed later.

    I was brought up being told by my father that it would "all be fixed" by the time I was 14. Great Ormond Street had me in the care of a general surgeon, who operated when I was 7 to redo my lip, leaving me with an ugly pink scar and dribbling if I slept on that side. At 9 my parents asked for me to get help breathing through my nose, and I had an ENT operation. At 16, the dentists put my teeth in a major brace, and had me gradually force the two sides of my upper jaw farther apart. I was referred to the Royal Dental Hospital where I was given a crown. They deliberately left a gap above the teeth so that I would not have trouble cleaning, with the result that I have had a lisp throughout my adult life. Meanwhile the general surgeon had retired, I was past the age of 18, and Great Ormond Street Hospital had consigned my records to the archives without ever offering me the chance of plastic surgery to improve my "squashed" nose and scarred lip. Eventually I got treatment paid for privately, but this did not finish until I was 24. I feel never really had the chance and the confidence to have proper boyfriends and build a long term relationship. My family did not cope well with my deformity. I learned to expect rejection during my childhood, and to withdraw. A positive cheerful can-do attitude overcomes all, but boy is it exhausting to maintain!