UPASNA Study
Research type
Research Study
Full title
Understanding the Policy, perspectives And Service level challenges to the care of children with intellectual disability and mental health Needs in the NAtional health Service in England
IRAS ID
361396
Contact name
Mrityunjai Kumar
Contact email
Sponsor organisation
London School of Hygiene & Tropical Medicine
Duration of Study in the UK
2 years, 2 months, 17 days
Research summary
It is estimated that there are 297,000 Children with Intellectual Disability (CwID) also known as Learning Disability (LD) in England. A significantly large proportion of them have mental health needs and behaviours that challenge, yet only a small proportion of such children and their families are able to access Child & Adolescent Mental Health Services(CAMHS). There is a lack of dedicated services for CwID in England, hence increasing their reliance on generic CAMHS, which is already overburdened with referrals. Studies have reported significant delays in accessing CAMHS while on the other hand providers of services attribute it to the way services are commissioned and organised. \nThis qualitative PhD study explores policy and perspectives using health systems approach. At first level, it examines if health policies are contributing to the inequalities in service provision. To do so, the study would analyse relevant policies in England, using validated tool named Equity and Inclusion in Policy Processes (EquIPP) framework. The study then aims to interview policymakers to understand how the narrative of health and social care policies are framed. At second level the study brings together views of lived experience of CwID, and understand families’ experiences of being accepted or rejected in CAMHS using qualitative interviews. Subsequently, the study will examine perspectives of service providers in CAMHS and understand barriers in service provision to CwID with mental health needs.\n\nThis is first study to systematically examine views of CwID, their families, and barriers which service providers face in the NHS in England for CwID and Mental health needs. This is first study to bring a policy analysis component along with perspectives of key users/providers to identify the gaps in system, and help formulate a better understanding of delivering care to CwID with mental health needs in England.\n
REC name
Yorkshire & The Humber - Leeds West Research Ethics Committee
REC reference
26/YH/0006
Date of REC Opinion
5 Mar 2026
REC opinion
Further Information Favourable Opinion