Impact case study database

Figure 1. Summary of the impact. Image under (i) is a family from Seattle Children’s Hospital craniofacial routine clinic, (ii) shows the CLAPA Leaver’s Pack, (iii) is from ReSurge International ( https://www.flickr.com/photos/interplast/119428083).

(i) Adoption of the framework by all 16 cleft teams in the UK to improve patient care and service delivery The core set of measures for psychological adjustment developed by Stock in conjunction with key stakeholders ( R1, R3, R4, G1, G2, S1, S2) have been implemented by all 16 UK Cleft Teams to assess all 5-year-olds. The Cleft Teams use these data, alongside the National Minimum Audit protocol, to provide key psychological evidence for intervention ( S1). Furthermore, Stock’s research has led to the formal assessment of the psychological wellbeing of parents across all NHS teams for the first time ( R4, S1).

Clinics at Alderhey and the Royal Manchester Children’s Hospital, for example, have adopted the framework and measures, replacing an existing screening protocol that lacked in relevant areas of psychosocial concerns. Stock and Rumsey’s framework:

‘is now used at the 5-year clinic alongside the nationally agreed minimum audit protocol…to more fully screen their psychosocial needs and to *identify those at risk.*’ ( S2).

The Chair of the Cleft Psychology Clinical Excellence Network (2013-2019) and Consultant Clinical Psychologist highlighted that Stock’s research also provided the foundation for service change for adult patients. The Chair reported, ‘ when an adult returns to the cleft service, rather than being referred straight to a surgeon or a dentist, many cleft teams will [now] schedule a psychology consultation’ ( S3).

(ii) New UK charity services for adults with cleft The UK charity for CL/P (CLAPA) originally focused on services aimed at children, families and young people, with minimal support provided for adults. Stock’s research ( R3, R4, R6) highlighted the psychological distress and on-going support needs of adults with CL/P. Additionally, her research provided a strong evidence base that led CLAPA to secure funding to provide services directed to previously unmet need. As a result, CLAPA established a full-time Adult Services Manager post in 2017 to develop a programme of adult services and put in place one-to-one peer support (accessed by 73 people, as of March 2019) and expand online services ( S4, S5). The Adult Services Manager reported that they had developed multi-modal resources including videos and podcasts (959 views and 1456 plays, respectively, as of October 2020) ( S5). Furthermore, young adults transitioning from routine care are now supported with a UK-wide ‘Leaver’s Pack’ (distributed since January 2020) to address their common queries and concerns and provide information on how to access services going forward. Adults using the services reported that they felt more confident visiting the GP or dentist and understood more about cleft treatment options ( S5). A service user with CL/P stated that the new support CLAPA provides, ‘ helped us to build a community and get adults the help they need’ ( S6).

(iii) Global adaptation of the framework for patient benefit Rumsey and Stock adapted their intervention framework for use worldwide by applying a three-tiered approach. Tier 1 facilitates teams in countries with minimal resources to explore patient-centred outcomes, while Tier 3 allows teams from the best resourced countries to comprehensively assess patient-centred outcomes, audit practice and share data worldwide. Furthermore, in 2017 Rumsey and Stock trained 468 health professionals from 15 disciplines in 26 countries in how to identify and address psychological issues in their patients using the tiered measures and intervention framework ( S7).

The former Chief Co-ordinator of the Cleft and Craniofacial Centre, Sri Ramachandra University, India, which treats over 1000 young people each year, said that ‘ the tiered measures … are helping to promote patient-centred care in developing countries especially’ ( S7). She further stated that the training provided by Rumsey and Stock in 2017 ‘ has made a positive difference to the way [attendees] work, focusing more on [the] patients’ perspective in making treatment decisions’ ( S7).

Stock’s framework and measures have also influenced both prenatal services and adult-led services in The Netherlands ( S8). The Amsterdam University Cleft Team now includes counselling in prenatal consultations to help communicate the diagnosis appropriately and provide support to parents ( S8). A Professor of the Amsterdam University Cleft Team, who is the current President of the European Cleft Palate Craniofacial Association, reported that Stock’s research ‘ has improved the way parents received information about the cleft once it was diagnosed during the 20-week ultrasound’ ( G2, S8).

Stock’s framework has also been applied in the care of patients with other craniofacial conditions. The Associate Professor of Paediatrics at the Seattle Children’s Hospital and University of Washington School of Medicine drew on Stock’s work from 2014, which provided an evidence base for practice ( S9). Expected psychological outcomes are now discussed for the first time with new families with young infants diagnosed with Craniofacial Microsomia ( G5- G6, S9).