KN Nick Bouras Medium Speaker 

Nick Bouras  

Professor Emeritus
King’s College London, Institute of Psychiatry, Psychology and Neuroscience


BIOGRAPHY


Mental Health and Intellectual Disability: History and Concepts Towards Evidence-Based Practices

Since the 1960s we have witnessed the closure of long-stay facilities and the resettlement of people with Intellectual Disability (ID) in community support services. Dynamic sociological and ideological views arguably have had greater impact on the care of people with ID than some of the achievements in molecular genetics and neurobiological research. One of the problems with ideologies, however, is that they sometimes conflict with other ideals such as evidence and objectivity, which can be a complex issue.

With the increasing closure of facilities, people with ID and mental health problems found themselves moving to less restrictive environments or remaining longer with their families. In such community settings, it became clear that services from both the ID network and the mental health system were required. The provision of the essential mental health services for people with ID and mental health problems became a major issue in the US and UK as community resettlement plans started to be implemented (Bouras, 2016). The process of deinstitutionalisation for people with intellectual and developmental disabilities has progressed well compared to that for those with mental health problems. It evolved more gradually and selectively, and resulted in less recidivism. Perhaps the fact that it is more difficult to deny the presence of actual disability in this group, compared those with mental health problems, has made the crucial difference in this respect. The form of change depends on each country’s unique historical perspective and national philosophies about care for people with ID. These include service design and planning, care packages, funding streams, staffing patterns and resources.

Historically, people with ID were seen as being incapable of having mental health problems. However, epidemiological studies over the recent years consistently disproved this, showing that people with ID have a higher frequency of mental health problems than the general population. Furthermore, an understanding of a clear increase in the prevalence of behavioural problems in people with ID has emerged. It is evident that when behavioural problems or challenging behaviours are not included, the increased prevalence in mental disorders in people with ID is less marked.

One of the most difficult issues has been how behavioural problems are conceptualised and classified, and to what extent mental health and behavioural problems should be considered separately in people with ID (Cooper, 2016). The distinction between mental health problems and behavioural problems has significant clinical and service implications. In clinical practice it is not always possible to neatly separate mental health problems and behavioural problems in people with ID. It is likely that there is a combination of biological, social and environmental factors, which interact with cognitive and adaptive deficits to make persons with ID vulnerable to mental health and behavioural problems. The need for a biopsychosocial approach, including co-ordinated multidisciplinary input, is of paramount importance.

Half a century after the introduction of community care for people with mental health problems including those with ID, the adoption of the concept of “meta-community mental health care” (Bouras, Ikkos, & Craig, 2017) is suggested. This concept capitalises on the successes of community care but equally acknowledges the limitations, including the wide range of complexities that have been experienced in the implementation of community care plans. The aim is to provide a conceptual framework in which to reflect on experience and to consider new or revised therapeutic initiatives and service developments. The starting point of meta-community care is the knowledge we already have of the principles of good community care, including the need for effective, accessible, efficient and coordinated systems with meaningful user participation. Ensuring parity of esteem between physical and mental health, and ensuring equitable access to effective treatment methods can be added to the aforementioned principles.

There is an encouraging increase in the evidence base on issues relating to people with developmental and intellectual disability including certain associated conditions. The most expended area in recent years is related to autism spectrum disorders where the literature is rapidly growing. Ill health and intellectual disability as well as service systems are also receiving attention. An obvious question at the times of translational research is how the outcomes produced by research have been translated for the benefit of people with ID, their families and their carers. High-quality research to strengthen the evidence base such as recent studies is necessary (Sheehan & Hassiotis, 2016).

The transformation of care for people with ID over the last few decades includes the movement towards integration, participation and choice for people with ID as a facet of larger disability, civil and human rights movements on a national and international level. There is now a consensus on the need to respond more adequately to mental health needs in this population. The current trends are geared towards community integration schemes with service users’ participation at all levels, including design and implementation with a person-centered approach. In spite of the existence of policies and services for people with developmental and intellectual disability, recognition of and provision for their needs carries low priority. This gap is greater in low and middle income countries, where the burden of disability needs to be recognized in order to plan for and meet the needs of those with developmental and intellectual disability across their lifespan.

In 2015, the United Nations General Assembly (Votruba, Thornicroft & FundaMentalSDG Steering Group, 2017) adopted 17 Global Goals: 193 world leaders pledged to take action to end poverty and inequality, and to protect the planet. They agreed on 169 targets to help them achieve those goals within 15 years. Mental health was included in the 2030 Agenda for Sustainable Development (SDG); Goal 3 is “good health and well-being – ensure healthy lives and promote well-being for all at all ages.” Target 3.4 is: “By 2030, reduce by one third premature mortality from non-communicable diseases through prevention and treatment and promote mental health and well-being.” These goals adopted by the international community should facilitate a conceptual re-orientation in thinking about mental health care for people with ID. The number of possible interfaces between services is increasing. Together with existing uneven financing systems, these interfaces are increasingly struggling to manage the providing of personalised care pathways adjusted to the needs of service users, their carers and families. We still have little information about the effectiveness or the cost–effectiveness of many interventions and methods of delivering services to the community, and we are lacking established methodology for evidence-based evaluations.


References

Bouras, N. (2017). Reflections on the challenges of psychiatry in UK and beyond. Pavilion Publishing and Media.

Bouras, N., Ikkos, G. & Craig, T. (2017). Meta - Community Mental Health Care: Towards a new concept. Lancet-Psychiatry (in Press).

Cooper, S. A. (2016). Challenging behaviours and interface with psychiatric disorders. In Hemmings, C. & Bouras, N. (Eds.), Psychiatric and Behavioural Disorders in Intellectual and Developmental Disabilities (3rd Edition). Cambridge University Press.

Sheehan, R. & Hassiotis, A. (2016). Reduction or discontinuation of antipsychotics for challenging behaviour in adults with intellectual disability: A systematic review. Lancet-Psychiatry. DOI: http://dx.doi.org/10.1016/S2215-0366(16)30191-2

Votruba, N., Thornicroft, G. & FundaMentalSDG Steering Group (2017). Sustainable development goals and mental health: learnings from the contribution of the FundaMentalSDG global initiative. Global Mental Health, 3(26),1.