Children with cleft palate condition will benefit from new care standards

Children with cleft palate condition will benefit from new care standards

A set of national standards to improve the care of children with a rare cleft palate condition have earned a nurse specialist a place in the Nurse Awards final.

Nursing Standard Nurse Awards nominee, Karine Latter Karen Latter (centre) hopes her work will make a difference to families Picture credit: Tim George

Karine Latter developed the nursing standards for infants born with Pierre Robin Sequence (PRS), which results in breathing and feeding difficulties, after her research showed significant variations in care throughout the UK.

She will find out if she has won the Nursing Standard Child Health Award at a ceremony at the Savoy, London, on May 1.

Karine, lead clinical nurse specialist in the Trent regional network for cleft lip and palate, had set out to build an evidence base to improve the outcomes for infants born with PRS, the experience of parents and improve nurse specialist practice nationwide based on parents' feedback.

Pierre Robin Sequence (PRS) is a rare condition with an incidence of approximately 1:15,500 births. The condition involves a cleft palate, a small lower jaw and a tongue that can sit high up into the cleft palate, causing partial or full airway obstruction and feeding difficulties.

The treatment depends on the severity of the condition, with most cases in the United Kingdom being managed by a nasopharyngeal airway - a plastic tube inserted via the nose, which sits on the tongue pressing it down and preventing it from obstructing the airway.

Karine recruited 25 families into the study from five national cleft networks, through the lead nurses, and conducted in-depth, open-ended interviews at home to explore experiences, views and feelings concerning the care and support they received.

Stephen Hilton, whose son was diagnosed with PRS at birth, took part in the research. He says: ‘It was very cathartic and fantastic to be able to talk about all the struggles and experiences we went through and know that they would contribute to something that would make a positive difference.’

Three key themes emerged from the study: impact, coping and communication.

‘We clearly needed to improve and I needed to use the findings to achieve that; there is no point in conducting research and not disseminating the findings.’ So Karine started work on developing the standards, using the findings of her study and other available evidence.

Once the first draft was finished, it was put out for consultation to national groups, parents of infants with PRS and national clinical nurse specialists in cleft lip and palate.

‘Getting patient feedback was difficult given the rarity of the condition, so I posted the standards on the national Facebook page for PRS, which generated discussion and feedback from parents nationally. I was surprised by the number who engaged.’

Each draft has gone back to the parents for more feedback. Parents say that if the standards were in place, the care they had received would have been better.

Stephen agrees: ‘They will make a big difference in driving consistency and best practice in PRS treatment,’ he says. ‘Karine involved the UK PRS forum in reviewing the draft versions so that she was sure that they would make the most difference to the people that it really mattered to, the parents who just want to know the best is being done to care for their child.’

'Although it took over five years to complete the study it was worth it,’ Karine says. ‘I am really passionate about this and excited that the resulting standards will make a huge difference to the children’s experience of care and their families. And that’s the driver for me – to continue to improve that care for them.’

Nottingham University Hospitals NHS Trust chief nurse Mandie Sunderland says: ‘We’re extremely proud of Karine and all that she has achieved. She has helped scores of cleft patients and their families in her time at NUH, and her research work will make a real difference to the lives of those affected by PRS.’

The standards were ratified at April's annual general meeting of the National Nursing Clinical Excellence Network for Cleft Lip and Palate, which is affiliated to the Craniofacial Society of Great Britain and Ireland. They will be audited in the first year.

Karine, who has been a nurse for 37 years, says she is really excited and honoured to be a finalist. ‘I also see it as a real opportunity to drive forward awareness of PRS in improving care for parents.’

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