Illness in people with intellectual disabilitiesBMJ 2008; 336 doi: https://doi.org/10.1136/bmj.39490.543137.80 (Published 13 March 2008) Cite this as: BMJ 2008;336:570
- Afia Ali, specialist registrar in psychiatry of intellectual disability1,
- Angela Hassiotis, senior lecturer in intellectual disability2
- 1Hackney Learning Disability Service, St Leonard’s, London N1 5LZ
- 2Department of Mental Health Sciences, Faculty of Biomedical Sciences, University College Medical School, London W1W 7EY
This week a report published report by the Joint Committee on Human Rights highlights the widespread denial of fundamental human rights to people with intellectual disabilities by mainstream public services.1 One reason why people with intellectual disabilities receive suboptimal care is diagnostic overshadowing, whereby a presenting symptom of mental illness or physical illness is incorrectly attributed to the person’s intellectual disability.2 Although people with intellectual disability have a higher prevalence of mental illness than people with a normal IQ,3 medical professionals are less likely to diagnose psychiatric problems in this group.2 People with intellectual disability are also more likely to have chronic disorders such as epilepsy, cerebral palsy, and genetic syndromes.4 5 However, their health needs are often unmet.5
Two recent reports by the Disability Rights Commission and MENCAP have highlighted the importance of diagnostic overshadowing in people with intellectual disability in England and Wales.6 7 They highlight the widespread inequalities encountered by people with intellectual disability or mental illness in the National Health Service and suggest that diagnostic overshadowing is one of the major barriers preventing people with intellectual disability from accessing adequate care. The Disability Rights Commission found that people with intellectual disability or mental illness were less likely to receive appropriate investigations, screening, and treatment than people in the general population and were more likely to die younger. Higher mortality in people with intellectual disability has also been found in other countries, especially in those with severe disability.5
MENCAP investigated the deaths of six people with intellectual disability and concluded that they were preventable and had occurred as a result of poor medical practice. The reports highlight the low priority given to the health needs of these people, the lack of appropriate training provided to medical staff, the disregard for the views of carers, and the lack of understanding of problems related to consent and capacity. Discriminatory judgments made by doctors about the value of the lives of people with intellectual disability—often based on misconceptions—were also recognised. The reports concluded that institutional discrimination is widespread within the NHS, and that the government and the NHS were failing the needs of one of the most vulnerable, stigmatised, and socially excluded groups in society. MENCAP recommended an urgent independent government inquiry into these deaths, which is now taking place. The problems were echoed by the Healthcare Commission’s investigations into services for people with intellectual disability by the Cornwall NHS partnership8 and the Sutton and Merton Primary Care Trust.9
So how can clinicians improve the situation? People with intellectual disability have complex medical needs and often cannot communicate their symptoms. A change in behaviour should raise the suspicion of a physical or mental illness and be investigated automatically. It is hoped that the new Mental Capacity Act 2005, which came into effect in October 2007 in England and Wales,10 will improve care. In patients lacking capacity, clinicians should ensure that all the necessary steps have been taken to improve capacity, such as presenting information in an accessible form, providing an independent advocate to represent the patient, and setting up “best interest” meetings where the views of carers and professionals are considered. This process will ensure that medical decisions are no longer made in isolation and are in the best interests of the patient.
The “Our Health, Our Care, and Our Say” white paper emphasises the need to give people with intellectual disability more control over their wellbeing, including access to regular health checks.11 Currently, general practitioners in the United Kingdom receive incentives for generating a register of patients with intellectual disability as part of the quality outcomes framework.However, this is a voluntary scheme and is insufficient to meet the health needs of people with intellectual disability. When annual health checks for people with intellectual disability were introduced in New Zealand, 73% of those screened needed follow-up interventions. These interventions may not have been offered otherwise, which suggests that such a scheme would be beneficial.12 The Disability Rights Commission has recommended several strategies for tackling health inequalities, including clear leadership from the Department of Health, strategic health authorities being held accountable for developing disability equality schemes, access to annual general practitioner health checks, and improved access to screening. The BMA and the royal colleges will need to play a more active role in implementing changes to undergraduate and postgraduate medical education, including training in communication skills for health professionals.
Improved communication and effective liaison between primary care, secondary care, and intellectual disability services is needed, together with joint working between medical bodies. This may help to reduce morbidity and mortality and improve quality of life. Research to date has used vignettes rather than actual patients, thus limiting the validity of findings in clinical practice.13 Future research should involve extensive clinical audits of deaths and service usage, in addition to using videotapes of “real” patients rather than vignettes.
Competing interests: None declared.
Provenance and peer review: Not commissioned; externally peer reviewed.