Clinical Psychology in UK Cleft Care

Clinical Psychologists in the UK are trained to work with individuals, families and groups of different ages experiencing psychological distress or behavioural problems which disrupt their everyday functioning and wellbeing. They aim to reduce distress and to enhance and promote psychological well-being, minimise exclusion and inequalities and enable service users to engage in meaningful relationships and valued work and leisure activities. Clinical Psychologists work in partnership with service users to design and implement interventions to overcome their condition or improve their quality of life. They undertake assessments and deliver psychological therapy but also train other practitioners, supervise staff, undertake research and lead teams of clinicians.

All UK cleft teams include Clinical Psychology as a core component of the multidisciplinary team (MDT). Although we do not expect that people who have been born with a cleft in the UK to have psychological problems, individuals may experience difficulties in relation to cleft which have either a direct or indirect impact on their psychological well-being. The Clinical Psychology team thus aim to provide a specialist service for individuals born with a cleft and their families.  Some of the issues that may be addressed include; how to answer other people’s questions and comments, confidence and self-esteem, appearance concerns, decision making and treatment planning, support around surgery, ante-natal concerns, post-natal concerns, and support around the diagnosis of cleft, anxiety, worries and/or low mood.  Clinical Psychologists will work with the rest of the MDT to help provide wholistic care and to support individuals through their treatment journey.  They will liaise with others involved (eg school or other local services) and also provide individual or family sessions using a variety of therapy models including Cognitive Behavioural Therapy (CBT), Acceptance and Commitment Therapy (ACT) or Narrative Therapy. 

Psychological Wellbeing and in Low- and Middle-Income Countries

Around 85% of the world’s population live in the 134 countries currently classed as low and middle income by the World Bank.  In low- and middle-income countries (LMICs) constructs such as ‘psychological wellbeing’, ‘mental health’ or ‘quality of life’ may be considered quite differently to our Western and UK views. Rathod et al (2017) state that social factors, such as poverty, urbanisation, internal migration, and lifestyle changes, are moderators of the high burden of mental illness (or poor psychological wellbeing) in many LMICs. Demographic factors, including a significant proportion of the population being in the younger age range, increase the incidence of severe psychiatric disorders and both man-made and natural disasters, such as armed conflict, earthquakes, epidemics and famine in developing countries increase the incidence of mental and emotional health problems in the affected communities, and at the same time, they divert limited resources to areas other than mental health. Finally, the cultural views and institutional biases against women and certain sections of communities (eg, religious, certain castes) increase the burden of illness in these population subgroups.

The availability of mental health care in LMICs is likely to be quite different to the type of provision seen in higher income countries with the training of those individuals delivering psychological support and intervention differing from the formal programs delivered in the UK and other western cultures.

The provision of psychological care for individuals born with a cleft will thus differ in LMICs in line with variations in other aspects of treatment including nursing, surgery, dental and orthodontic care and speech therapy. Nonetheless, it seems important that the social and emotional experience of individuals born with a cleft in any country, are considered and CLEFT are committed to offering support to all those countries with whom it works to support the (culturally appropriate) development of this aspect of cleft care too.

A Clinical Psychologist’s Experience of Joining with the Nepali Cleft Team

In October 2023, I was able to join a team of clinicians – largely from the Newcastle, UK cleft team - in Kathmandu for a week-long visit to join with and support the Nepali cleft team.

Kate is pictured below front centre:

The Nepali cleft team do not have a Clinical Psychologist working with their service. There are apparently around 150 Psychiatrists and 30 registered M Phil Clinical Psychologists in Nepal (Rana, 2018) and the cleft team have some links with a local psychologist based at Tribhuvan University Teaching Hospital who mainly works with adults (not those with cleft) and has a key national role in thinking about suicide prevention.  It was useful to meet this psychologist – Mr Padma Ghimere - and to think with him about the national and local context for psychology in Nepal and specifically within cleft.

Despite never having had access to formal input for their service from a psychological professional, the cleft team in Kathmandu were interested to hear about the role of Clinical Psychologists in UK cleft teams and receptive to thinking about the psychological wellbeing of their patients and families within the cultural and practical context in Nepal. Despite my fear that our UK models of understanding psychological wellbeing and providing interventions for this would be culturally inappropriate, it soon became apparent that many concepts were equally relecant in this setting  and the issues facing children, young people, adults and families affected by cleft were similar in many ways.  Whilst the team were able to appreciate and discuss these aspects, it is clear that to expect patients to be able to access formal input from a Clinical Psychology team (such as in the UK) would be unrealistic. 

My sessions thus concentrated on working with the health care assistants (known as ‘peripheral nurses’) who provide the bulk of the day to day care for babies born with cleft and their families. In sessions with them we considered what psychological wellbeing means for them and for the individuals that they work with and how they might consider their own wellbeing as well as enhancing that of the cleft team patients. My ‘classes’ (which is what the health care assistants called all of our sessions with them) thus focused on basic psychological concepts and were interactive – asking the peripheral nurses to think about their own and their society’s views on psychological wellbeing versus ‘mental health’ first before thinking about how cleft might relate to this.  We thought together about the psychological impact of cleft for Nepali families from the point of diagnosis, through early surgeries, and into childhood, adolescent and adulthood. The peripheral nurses were thoughtful and engaged and it seemed that the concepts of psychological wellbeing, adjustment and distressed that we were discussing were relevant and important and something that they were keen to think more about – particularly in relation to how they might support this aspect from within their roles.

I also had the opportunity to meet with the nurses on the wards at Kirtipur Hospital (where cleft patients would recover post-operatively) and the ‘sisters’ or nurse managers who supervise them. I spent a substantial amount of my time with the cleft service HCAs, ward nurses and nurse managers thinking about their own psychological wellbeing and the importance of taking care of this in order for them to be able to support the children and families with whom they work. This message was well received and, again, seemed to be an entirely appropriate concept in a Nepali context but not one which staff had had protected time or opportunity to talk about.

During my time in Nepal, I was able to join cleft service triage clinic appointments and to reflect on the similarities and differences in how these are organised and run and how this might affect the patient experience and thus their psychological outcomes.  I thought with the team about some of the other, indirect, ways that Clinical Psychologists in the UK support patients and families including the provision of information leaflets (for instance, to help explain about and prepare young people for an alveolar bone graft procedure) to help reduce anxiety and encourage the use of sensible strategies to help them pre and post-operatively. Providing patient information is not something the Nepali team have tended to do and we discussed whether this might be practically or culturally appropriate. It may be something that I can support the team in developing if, indeed, they feel it would be helpful.

It was wonderful to have the opportunity to meet with the clinicians and support workers in the cleft service in Kathmandu, Nepal. I was struck by the seemingly universal nature of basic concepts of psychological wellbeing and the willingness of the clinicians and support workers to want to consider these further – particularly in relation to the experience of being born with a cleft in this context. Whilst there is little opportunity for access to direct input from qualified psychological professionals, there is certainly a great deal being done already to support patients’ psychological wellbeing and more that can be done from within the care that is already provided. I hope to remain connected with the Nepali cleft team to provide advice and support and resources in any way that I can to support their development in this area.

 Dr Kate le Maréchal

Find out more about the team visit to Nepal by watching our short film.