Disability Rights in Healthcare: assessing NHS adherence to the United Nations convention on the rights of persons with disabilities (UNCRPD)

Introduction: Article 25 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD), states that persons with disabilities have the right to the enjoyment of the highest attainable standard of health. Psychotropic medications are sometimes used when a person with intellectual disabilities (ID) presents with a challenging behaviour. Such behaviour could lead to the child being expelled from school or being sent away from family to reside in a residential setting. The first line of interventions should be psychological and a behavioural support plan should be commenced; in addition, a parent training programme should be considered to try to tackle the behaviour according to National Institute for Health and Care Excellence (NICE) Guidelines. Stomp-Stamp Guidelines were launched in December 2018 by NHS England and The Royal College of Paediatrics and Child Health. The British Association of Childhood Disability and the Council for Disabled Children pledged to ensure that children and young people with intellectual disability, autism or both, have access to appropriate medication [in line with NICE guidance] and are not prescribed inappropriate medication. Purpose: The aim of this study is to identify the compliance of the Child and Adolescent Intellectual Disability Psychiatric Service (CAID) in South Wales with the STOMP-STAMP guidelines in the monitoring of children and adolescents with Intellectual Disability who are prescribed psychotropic medications. Methodology: A retrospective study of clinical notes of children and adolescents with moderate to severe intellectual disability (that is an IQ of less than 50), who are currently under CAID’s tertiary mental health service. Results: The notes of 59 children and adolescents were studied (78% males and 22% females, age range 8-17 years with mean age of 13.49 years and STD 2.254). Autism Spectrum disorder was the most common comorbid diagnosis, followed by anxiety disorders. A total of 3.3% of the children had an additional diagnosis of Down’s Syndrome. Epilepsy was increasingly associated with polypharmacy, poor response to medications and severe challenging behaviour. Consents to medications were well documented and obtained from those with parental responsibilities. More than half of the participants were on monotherapy. The antipsychotics were the most common medication prescribed, followed by antidepressants. Diagnoses of the comorbid conditions were well documented in each file. Insomnia was the most common symptom with the majority being on sleeping medicines. Obesity was the commonest physical health problem in the sample followed by constipation; both are known side effects of antipsychotic medication. Most of the children could not have the appropriate investigations recommended by NICE guidelines before initiating the medicine, such as blood work and an ECG. Study Limitations: This study has some limitations. The sample size is relatively small. The catchment area of the service is relatively a deprived one so the findings could not be generalised. The study excluded children and adolescents with mild intellectual disability. Conclusions and Recommendations: Medication, including polypharmacy, is still the main method of controlling severe challenging behaviour in the absence of evidence-based psychological therapy such as Applied Behaviour Analysis (ABA). Judicious use of antipsychotics is required in the ID population given the increased risk of the side effects to the child and young person’s short-term and long-term physical health. The importance of multi-agencies working to minimise use of antipsychotics should be stressed. Originality Value and Practical Implications: Although this study was conducted at a national level, linking this work to UNCRPD provides for a macro level accountability framework. The practical implications are that by engaging in a systematic time serious analysis of practice, this will ensure continual service improvement, ultimately safeguarding the rights of such vulnerable children and adolescents. Keywords: Intellectual Disability; Children and Adolescents; UNCRPD; Mental Health Service. Citation: Hassan, A. O. and Karrar, S. (2024): Disability Rights in Healthcare: Assessing NHS Adherence to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). International Journal of Food, Nutrition and Public Health (IJFNPH), Vol.14, No.1-2, pp.1-14.