Cleft Lip and Palate

Impact of cleft clinic appointments

The care of a child born with a cleft lip and/or palate will be co-ordinated through one of 9 regional specialist cleft service units in the U.K. and the Republic of Ireland. Depending on where you live in the U.K. you may have to travel some distance in order to attend clinical and surgical appointments (see ‘Cleft treatment pathway’). An independent survey of regional cleft services in the U.K. found that most families using the service lived within a one hour drive of the clinic. There may be regular appointments for monthly speech and language therapy (SALT), or they may be less frequent appointments with the multidisciplinary team or individual appointments with, for example, an audiologist, orthodontist and psychologist. There may also be more intense periods of clinic appointments with the MDT in preparation for surgery such as lip or palate closure or orthognathic surgery. Different appointments may take place in different hospitals but the cleft teams are very flexible with appointments and work closely with families to minimise the impact on family life.
Some of the regional cleft centres have ‘outreach’ clinics where specialists such as orthodontists, surgeons, speech and language therapists and psychologists travel to smaller clinics or hospitals in more remote areas. Some regional cleft centres provide accommodation for parents to stay with their child overnight following their surgery, but this can be restricted to one parent per child. 
The families we spoke to found that getting to clinic and hospital appointments was one of the more challenging aspects of having a child born with a cleft lip and/or palate. The reality of clinic visits means that families may have to rely on support from friends and other family members to look after any other children. Parents also need to take time off work to attend appointments. This may mean taking unpaid or annual leave, a process which is much easier if one has a sympathetic and understanding employer. In order to attend clinic appointments children will need to miss school lessons: while they may consider this to be a good thing it may impact on their educational development. Parents also told us that the hassles involved with attending clinic sessions with their children sometimes put a strain on their relationships. 
There is also a financial cost to families as they need to budget for travelling expenses, accommodation and unpaid leave in order to attend clinic appointments with their child. Some mothers felt they compromised their own careers and employment opportunities in order to be available for clinic appointments. A few parents had been able to get state support for their child, for example Disability Living Allowance. However there was a reluctance to claim this benefit as they do not consider that their child is ‘disabled’. 
Last reviewed June 2017.

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