Young people with physical illnesses are at significantly greater risk of developing mental health problems than the general population. Such problems can have negative consequences for the physical illness. Low intensity evidence based psychological treatments are recommended by NICE for common mental health disorders but can be difficult to access. Our project aims to evaluate the clinical and cost effectiveness of NICE compliant low intensity psychological interventions for emotional and behavioural problems to children with physical illnesses at Great Ormond Street Hospital. Identifying mental ill-health and offering evidence-based treatment in conjunction with physical health treatment will immediately facilitate integrated care and ensure equitable access to treatment. Such integration is consistent with NICE guidance for a range of physical illnesses and the Government’s ambition for mental and physical health care to be better integrated at every level.
Aims and objectives
People with long-term physical health problems are approximately three times more likely to have mental health problems than the general population. People with both physical and mental health problems face poorer clinical outcomes and a significantly lower quality of life than people with a physical health problem alone (e.g. CG91, CG137, NG62, NG18, CG153). The aim of this initiative was to develop, evaluate and disseminate the content and implementation of a psychological wellbeing drop-in centre in a children’s hospital through continual iterative testing guided by young people, carers and staff.
This initiative aims to transform access and delivery of mental health care in young people with physical health problems and will pave the way for future service developments which will enable this population to have convenient access to high quality, NICE recommended, low intensity psychological therapies that improve mental health and quality of life, through the following objectives:
(1) Identify the components of a drop-in centre that are relevant, meaningful, and useful to children and young people with physical illness and their families;
(2) Evaluate the impact of the provision of a drop-in centre at an (a) individual and (b) service level.
This parity approach will ensure that NICE recommended low intensity psychological interventions for mild depression and anxiety (including OCD and social anxiety) [CG28; QS53; CG31, CG159] are easily accessible and integrated with physical health care.
All patients attending the drop-in centre are screened for common mental health problems using automated evaluation tools including the Strengths and Difficulties Questionnaire and Developmental and Wellbeing Assessment. These assessments also allow for increased detection of neurodevelopmental disorders including ADHD and Autism Spectrum Disorder and signposting to NICE compliant management for these disorders [NG87, CG170].
Demonstrating the benefits of taking a ‘whole person’ approach to health and integrating mental and physical health care will not only have significant lasting impact on the young people involved in this proposed project, but will also be of relevance to other children’s hospitals across the UK and to adults with long term physical health conditions. This research will help policy makers and commissioners understand the factors that contribute to the successful implementation of integrated health care within busy clinical settings
Reasons for implementing your project
Current standard care for mental health in paediatric settings is significantly limited because specialist child and adolescent mental health services (CAMHS) are not routinely integrated with physical healthcare. Currently, young people and families don’t know where to go for help, their referrals to child and adolescent mental health services are often turned down due to increasing demand and raised inclusion criteria, the focus is purely on their physical health or the help they have been offered has not been evidenced based or effective. Stigma means that mental health treatment is frequently delivered late in the care pathway, losing the benefits of early intervention.
Integrating mental and physical health services and early intervention are NHS priority areas. This research will provide crucial evidence for the clinical and cost effectiveness of low-intensity interventions and the stepped-care model in the context of physical health. Furthermore, it will provide crucial data to help inform future guidelines and care pathways specifically for health professionals working with young people with comorbid mental and physical health problems.
In 2014/2015, GOSH had more than 240,000 patient visits a year (outpatient appointments and inpatient admissions) and each of those patients will be accompanied by a carer bringing the total number of people eligible to access the booth to approximately half a million. If only 1% of these access the drop-in centre, this would translate to approximately 5000 per annum or 100 people per week. Meta-analyses indicate that psychological interventions reduce care costs by 20% or £1,234 per patient and that the cost of psychological treatment is more than offset by the resulting savings in physical healthcare costs. This stepped care approach is likely to result in considerable cost savings to the NHS.
We have had involvement from multiple stakeholders including service users and carers from Great Ormond Street Hospital and the London Young Person's Mental Health Advisory Group (YPAG). We have consulted with 36 young people and 6 parents, along with clinical staff, members of the NHS Trust Executive team, the space committee and hospital volunteers. They all expressed unreserved enthusiasm and support for the proposed research. The YPAG also contributed to the design, name, and logo of the drop-in centre.
How did you implement the project
This project used three core change methods:
(1) The Model for Improvement and Plan-Do-Study-Act (PDSA) Cycles: The centre is continuously measured, adapted and tested through iterative improvements. Patients, families and clinical staff provide detailed feedback on the content and nature of the centre. This feedback is used to further develop the centre, which is then tested on further patients.
(2) Experienced-based Co-design: Patient, carer and clinician involvement was embedded throughout the project through focus groups, interviews and feedback forms, and was central to developing, designing and implementing changes.
(3) Education and protocols: Training modules and protocols for staff have been developed to enable continuation of the long-term sustainability of the centre, and for future roll out to other services.
The primary costs funded by the research grant were for staff. We employed two full-time Psychological Wellbeing Practitioners to provide low intensity therapies. They are supervised by a Child and Adolescent Psychiatrist and psychologist specialising in low intensity interventions. We also invested in technology. We have used an online system for collection of parent and child-report measures, which enables both therapists and families to track their progress through treatment and ensures that we are able to track outcomes (https://www.klikprofile.co.uk/). We also purchased an online diagnostic assessment tool – the Development and Wellbeing Assessment (DAWBA), which can be remotely completed by families and provides mental health disorder diagnoses. This is significantly cheaper than equivalent clinician administered assessments and can be delivered immediately, negating the need for long waiting lists for these assessments.
Implementation of this change, including patient self-referral, was at times challenging and the relationship with existing internal and external services required careful management. We needed to delineate the boundaries of our work (focused on early intervention, low-intensity treatments for mental health problems) and ensure that the project was not perceived as a criticism of existing services (for example, paediatric psychology services who focus on emotional and behavioural difficulties associated with having and managing a chronic physical health conditions). We have worked very closely with other services to ensure clear inclusion criteria for the different services and referral pathways between them.
The drop-in centre was run for one week to preliminarily evaluate the need for such a resource and to characterise the patients seeking support. We report these short-term results here. As the project is ongoing, we eventually aim to provide results of longer term follow-up, including outcomes of interventions.
Participants recruited to the project (n=31) were not significantly different to patients seen within the wider hospital with respect to age and gender. With respect to ethnicity, participants from a BAME background (45%) were over-represented relative to hospital-wide data. This suggests that the drop-in centre may be an effective way to increase access to mental health support amongst BAME populations.
Nature and severity of symptoms
The majority of young people were in the clinical range for common mental health disorders (n=24). 83% experienced symptoms for over 12 months and 35% had never previously accessed mental health support. This suggests there is a proportion of patients within the hospital with significant unmet mental health needs, who may be served by a drop-in centre.
Utility of the centre
30% of participants received NICE-compliant low-intensity intervention from the centre. 36% were referred to internal paediatric psychology services. This suggests that the drop-in centre might act as a highly visible ‘single-point-of-access’ for mental health care, guiding families to treatment pathways that they were previously unaware of. 10% of participants were referred for further assessment (e.g. for autism). This may reflect the sensitivity of systematic assessment and screening tools used as part of the study.
Qualitative interviews with participants and experience of service questionnaires suggest that the centre has been uniformly well received by both patients and staff (‘‘Access to incredible valuable service - these things are not well publicised and those who need don't necessarily get it. All these calls that went through are brilliant”; “We think that the service is amazing. We’ve tried to get this kind of help since our daughter was a baby, to no avail. The thing we’ve liked best is that we’ve felt listened to, we feel that our daughter has been listened to and that her specific needs have been addressed. I just feel it is a shame that the wider community can’t benefit from services such as this as psychological help for children in the community is woefully lacking”; “a wonderful initiative”).
Key learning points
Overall, the initiative suggests that a drop-in self-referral centre for mental health problems located within a paediatric hospital is an acceptable and feasible method of ensuring integration of physical and mental health services for children with chronic illness. Most participants met the clinical threshold for common mental health problems and limited previous support, indicating unmet need amongst this population. A combination of onward referrals and immediate or planned interventions were found to be appropriate to meet the needs of the participants, suggesting a possible dual role for the centre as a single-point-of-access as well as a method for the delivery of low-intensity psychological interventions.
The use of psychological wellbeing practitioners delivering NICE compliant interventions is a cost-effective method to providing such support within a paediatric hospital. It can also work well alongside other higher intensity interventions. This requires close collaboration with other services to develop effective integrated working. Regular meetings with stakeholders, including patient and public research advisory groups (PPI RAG), have been invaluable to ensuring that any barriers to implementation have been addressed. Having champions from departments across the hospital has given credibility to the project and increased participation rates.
The location of the booth within the main reception area of the hospital has maximised its visibility and people’s awareness of the project. There was debate regarding whether the presence of a physical ‘booth’ would be stigmatising, but the PPI RAG suggested that the option to either self-refer by telephone/email or to ’drop-in’ would meet the needs of different families. Quantitative and qualitative results suggest that the booth is indeed meeting the previously unmet needs of a wide range of families in the hospital and there is potential for this model to be rolled out across paediatric hospitals nationally.