Improving support for people with cleft lip and palate
Research at UWE Bristol has helped improve the support provided for people with cleft lip and palate. All UK cleft care teams now include a psychologist. It has also led to the widespread use of effective new forms of psychological support, and to training used by practising psychologists across Europe. The UWE Bristol team has also raised public awareness of the condition.
UWE Bristol research uncovers real-world problem
The most common congenital facial visible difference (disfigurement) is a cleft (gap) in the lip. It affects about one in 700 live births. People with this condition face significant psychological challenges. Until recently, the focus of the healthcare that was made available for them was on biomedical interventions to address their physical appearance and function – such as surgery and dental braces.
Research led by Professor Nichola Rumsey at UWE Bristol’s Centre for Appearance Research has highlighted the psychological challenges experienced in childhood, adolescence and adulthood, both by the people affected themselves and also their families. From the late 90s onwards, the research also found substantial gaps between the psycho-social needs of ‘cleft’ patients and the healthcare that was provided for them.
More recently, Rumsey and colleagues have shown that psychological factors make a significant contribution to patients’ quality of life. Until then, it had been assumed that this hinged most importantly on the severity or type of their visible difference.
The team went on to develop evidence-based support that responded to issues identified by the patients themselves. The result, amongst other things, was the creation of effective online support tools those affected found both acceptable and usable.
Improved support in the UK
The early research findings were submitted to a UK Department of Health review of cleft care provision. As a result, Rumsey was invited to join the overseeing expert group as its only psychologist. Its conclusions included the recommendation that “an appropriately trained psychologist should be a core member of each cleft team”.
This had been fully implemented by June 2013. Psychologists are also now involved in front-line care in all UK cleft teams, screening for psychological distress and providing support and intervention for all that need it. This represents a substantial change in the character of the support provided for all patients and their families. All affected babies born in the UK – about 1,200 every year – now have access to a psychologist.
The new clinical psychologists in cleft needed a professional forum. Rumsey, acting with colleagues from elsewhere, played a key leadership role in establishing a new special interest group for them. In 2010 it drew on UWE Bristol research to set out new guidance on standards of psychological care in cleft, now used across the whole of the UK.
The effects of the UWE Bristol work on patient-centred care have spread far beyond the UK.
Rumsey and colleague Professor Diana Harcourt edited a major new book, the Oxford Handbook of the Psychology of Appearance, published in 2012. It is aimed not only at their fellow psychologists, but also at other health professionals working with patients with visible differences, such as nurses, surgeons and therapists, and also policy makers, public health specialists and educationalists.
People with visible differences can experience low self-esteem, stigma or discrimination. Rumsey and her team have developed evidence-based training materials to help professionals such as careers advisors and vocational trainers guide people through these problems. These are currently undergoing trials by educators and activists in six European countries who help people disadvantaged by their appearance.
Helping charities provide effective support
The research findings highlighting the psychological distress felt by people affected by cleft and identifying what can be done to best help them have led Rumsey into long-term collaborations with some key charities whose missions are in this area – Changing Faces, the Cleft Lip and Palate Association (UK), CleftPals (Australia), Facial Palsy UK and The Scar Free Foundation.
The research and involvement of the UWE Bristol team has helped shape the written materials and online interventions provided by these organisations, as well as the support they offer over the phone and face to face. It has also helped them develop training materials for healthcare professionals.
Engaging the wider public
Rumsey has been energetic in explaining the research and the issues it has raised to the wider public, both in the UK and elsewhere. Her many media contributions have included appearances on BBC Radio 4’s Today, Woman’s Hour, You and Yours and All in the Mind. Her television appearances include the BBC documentary Jess: My New Face, ITV’s Trinny and Suzannah and Channel 4’s Beauty and the Beast. She has also contributed in person to many public debates and other events.
Harcourt has led the UWE Bristol team in developing an interactive display at Bristol’s hands-on science exhibition, @Bristol (We the Curious). It was designed to challenge the way we form initial impressions of people based on their appearance, and in the first half of 2013 attracted 22,000 visitors.
All of this has supplemented the direct effects on the support for people with cleft by raising public awareness of the condition – and the issues that surround it.