The value of research to cleft professionals and patients

Tracy explores with Rona why research into cleft lip and palate is so needed and what the potential impact is on patients. She also explains why it is so hard to get funding for this kind of work.

This is a fantastic opportunity to hear one of the UK's best cleft lip and palate surgeons share her thoughts on this interesting topic.

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We are CLEFT, we support cleft lip and palate teams in poorer countries by working with local surgeons and other specialists to help them develop high quality multidisciplinary cleft centres. We do this by visiting and working with them regularly, helping to provide education and training and donating much needed equipment. Our goal is to help local teams so that children born with clefts in these countries will have the same opportunities as those in the UK.

CLEFT also supports research in the UK which will potentially benefit the much greater number of cleft lip and palate patients in countries other than the UK. Our research projects include a pilot project to develop techniques for 3-D MRI scanning of the palate, a study of the muscles of the soft palate to try to improve the quality of the surgery as well as investigating submucous cleft palate development and therapy.

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Thank you for your kind and interesting comments. You’re right that in developed countries you are most unlikely to die as a result of having a cleft lip or palate. However, some children with cleft lip and/or palate, particularly when associated with other health problems, may have life threatening problems, that require modern medicine techniques and highly skilled carers. Where medical services are limited, such as in LMIC countries, these children may well not survive, and even a severe cleft palate on its own may be life threatening because of the difficulties in feeding a newborn baby with such a cleft. I think it is more that, as is the case for many uncommon conditions, it can be difficult to have your voice heard against a background of increasing need for NHS treatment of the more common health conditions affecting an ageing and growing population, and the increasing costs of treatment. And for cleft I think this is particularly true as many people without direct knowledge of the condition may believe that treatment is ‘simply’ and only an operation carried out very early in life. They may have no knowledge of the ongoing care required, or the difficulties that children and adults with cleft may face after the initial cleft repair surgery. There is very little awareness, even amongst health professionals, of the multidisciplinary ongoing care that is so important for the long term wellbeing of children and adults affected by cleft. This care is highly specialised, and although it may well involve further surgery is predominantly in the ‘softer’ areas of health services, such as speech and language therapy, clinical psychology, paediatric dentistry. There is good evidence that poor cleft outcomes have deleterious effects in the long term, particularly in speech and its relationship with educational outcomes for example. But these areas of care rarely make headlines. Increased awareness of the complexity and long term nature of cleft care is something that all those involved in cleft care would like to see. - Rona Slator

From: Melanie Baldwin

Published: 12 July 2021
Really interesting interview. Thanks to Tracy and Rona. I wondered whether funding is hard to find for cleft issues because one doesn't die because of having a cleft?

From: Kaye Knowles

Published: 07 July 2021

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CLEFT was established in 2007 with one aim, to help improve the lives of children born with cleft lip and palate, either by funding research into the likely causes of the condition or by helping support teams in lower and middle income countries.
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You can make a one-off donation today or sign up to giving a regular monthly gift. All donations, small or large, will help us to improve the lives of those born with cleft lip and palate both now and in the future. 100% of your donation today will go towards funding an international or research project thanks to a charitable trust covering all our administrative costs until February 2025.
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CLEFT was established in 2007 by cleft surgeon Brian Sommerlad - based at Great Ormond Street Hospital for Children, together with a former patient and a patient's grandmother.
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Today, 1-in-700 babies in the UK are born with a cleft lip and palate, the most common form of birth defect. The impact on a child’s life as they grow is profound. Typically, they will need at least four operations. They may also require ongoing tests, treatment or therapy. It will affect the way they look but also their speech, hearing and dental development. It can leave deep psychological scars.
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