Children and young people with epilepsy have an increased incidence of mental health conditions including anxiety and depressive disorders when compared to the general population and those with other long-term conditions. Some studies have indicated that 37% of CYP with epilepsy have a mental health condition, compared to 11% of CYP with diabetes, and 9% of the general population. Without early identification and support, this can lead to increased morbidity, treatment outcomes and educational attainment.
The below case studies provide examples of how services have integrated mental health and well-being care within epilepsy clinics.
Case study 1
Organisation
NHS Lothian
What did they do?
NHS Lothian established and piloted an innovative model of care called Psychology Adding Value Epilepsy Screening (“PAVES”). It consists of mental health screening within epilepsy clinics alongside a stepped care intervention pathway.
PAVES provides a website (desktop) based screening tool allowing non-mental health trained clinicians to support identification of the extent and nature of CYP’s mental health needs. The electronic questionnaires can be completed in clinic or prior to attendance via a QR code. Results are then provided in PDF format and can be directly integrated into electronic patient records, and the patient is assigned a traffic light rating according to the severity of mental health concerns.
The traffic lights map to appropriate, stepped, early intervention options. Interventions include signposting to ratified third sector (VCSE) organisations, self-help materials, communication with schools, parent workshops and a six-week psychosocial group for adolescents.
What was the impact?
PAVES was piloted from 2017-2019 at the Royal Hospital for Children and Young People, NHS Lothian. During the pilot, 232 CYP with epilepsy were screened with a total of over 600 screenings undertaken (repeat screenings at each appointment). Screening identified that 53% of CYP, not already receiving CAMHS input, were experiencing high levels of mental health difficulties. Based on their traffic light rating and clinician opinion, the CYP were offered appropriate interventions/support.
The PAVES approach was shown to decrease referrals of CYP into CAMHS services. When comparing number of neurology referrals to CAMHS before PAVES (2015 and 2016) and while PAVES was running fully (during 2018 and 2019), there was a 62% reduction in referral rates to CAMHS from epilepsy services. A health economic analysis on the PAVES pilot was undertaken by the Scottish Health Technologies Group within Health Improvement Scotland (HIS). It found that per 100 patients screened, PAVES could avoid 26 referrals to CAMHS compared to standard practice and save nearly £30,000.
Case study 2
Organisation
UCL Great Ormond Street Institute of Child Health
What did they do?
MICE is an evidence-based intervention for children and young people (CYP) with epilepsy, aged 3-18, who meet diagnostic threshold for a common mental health disorder including anxiety, depression, and/or behaviour problems. The intervention utilises the Modular Approach to Treatment of Children with Anxiety, Depression or Conduct Problems (MATCH-ADTC) in which children and young people received up to 22 sessions of the modular psychological intervention delivered virtually over 6 months by non-mental health professionals.
The programme began in 2017, and included a development phase, in which the MICE intervention was developed from existing resources with significant feedback from families and physical and mental healthcare professionals. A range of professionals were then successfully trained to deliver the intervention, including assistant psychologists, epilepsy nurse specialists and paediatricians. MICE is a modular intervention, in line with NICE guidance, which is delivered remotely over the telephone/video conferencing, with patients recruited from 13 sites across England and Northern Ireland, including general hospitals and specialist/tertiary referral centres. The intervention was flexible according to families’ needs and preferences, for example each family identified their own goals for treatment, and was delivered to CYP directly, via parents, or a combination, and children with autism spectrum disorder and/or intellectual disability were included. The modular nature means that more than one mental health disorder can be treated in the same intervention.
What was the impact?
A £2.2million NIHR funded randomised controlled trial of 334 families, comparing the MICE intervention in additional to usual care with assessment-enhanced usual care (where everyone received a mental health diagnostic assessment, the Development and Wellbeing Assessment (DAWBA)), found positive results in favour of the MICE treatment. Those in the MICE arm had significantly lower total and impact scores on the Strengths and Difficulties Questionnaire (SDQ) in comparison to those receiving assessment-enhanced usual care at six months follow-up. Feedback from qualitative studies demonstrated a high acceptability from patients and services. The intervention was effective for CYP with epilepsy who had intellectual disabilities and/or autism. Parents who received MICE intervention had lower scores on measures of anxiety and depression than those in the control arm.
Case study 3
Organisation
Arrowe Park Hospital, Wirral University Teaching Hospital NHS Foundation Trust
What did they do?
Arrowe Park Hospital, a secondary care setting part of Wirral University Teaching Hospital NHS Foundation Trust, offers appointments to approximately 240 CYP with epilepsy annually. The Trust has benefited from an embedded 8a Paediatric Clinical Psychologist within the epilepsy multidisciplinary team for one day per week since 2020. The psychologist is employed by the Trust with appropriate paediatric clinical health psychology supervision and clear internal operational support.
Consultant paediatricians and specialist epilepsy nurses can refer onto the psychology service for therapeutic support relating to epilepsy specific need. The monthly multi-disciplinary epilepsy team meetings and consultation opportunities allows wider dissemination of psychological approaches and sharing of expertise. The service developed an innovative and simple conversational tool, “Me and Epilepsy”, to facilitate appropriate conversations around emotional wellbeing and specific epilepsy related psychological need during epilepsy medical clinics. The tool identifies pre-existing coping strategies and allows CYP to share what they wish to discuss and talk about. Together, the use of “Me and My Epilepsy”, development of a clinical escalation pathway and directory of resources have facilitated signposting and referrals to alternative support for educational, neurodevelopmental and/or mental health need. Around 90% of CYP have reported that they found it beneficial to use “Me and My Epilepsy” during their medical appointment. Ongoing revisions are being made to adapt the tool for CYP with learning considerations and to capture parental perspectives.
What was the impact?
Bi-monthly meetings between CAMHS and the paediatric psychologist have assisted in case discussions, clear facilitation of referrals and service information sharing. Embedding psychology within the epilepsy multidisciplinary team has enabled development of good practice in offering specific and timely paediatric psychology expertise.
A key advantage is the integrated working and the normalisation of psychological input as part of the epilepsy team, and the team have found that it reduces stigma around mental health conditions, confusion around mental health needs, and does not pathologise the psychological experience related to epilepsy.