One avoidable death is one too many
Dr Janet Finlayson
In this issue of Lancet Psychiatry, Marta Buszewicz and colleagues1 and Sally-Ann Cooper
and colleagues2 report the results of two studies of the effects of health checks given by
healthcare professionals to adults with intellectual disabilities. Deinstitutionalisation for
people with intellectual disabilities in the UK during the past few decades has been a
revolutionary success, and enabled the vast majority to live in the community—on their own,
with their families, or with paid support.3 Concurrently, this development has allowed
researchers and research-active clinicians in the specialty to undertake epidemiological
studies of community-based populations of people with intellectual disabilities.4,
5
This
pattern of deinstitutionalisation and subsequent focus on health is evident to different degrees
throughout the world, in European countries such as Norway and Sweden,6 and
internationally in countries such as Australia.7
People with intellectual disabilities, despite their heterogeneity, do have different patterns of
physical and mental health compared with the wider population.8 They can experience
barriers to accessing health care, as well as health inequities if their particular health needs
are not being recognised, and are thus unmet.8 The consequences of these barriers and
inequities were underlined recently, in Pauline Heslop and colleagues' publication of The
Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK.9
This publication reported that 90 (37%) of 244 investigated premature deaths of people with
intellectual disabilities could have been avoided through better health care.
Health-care provision for people with intellectual disabilities in the UK is based upon the use
of the same local health-care services as all other populations, wherever possible, with input
from community-based teams of specialists in intellectual disabilities as deemed necessary.3
Fortunately in the UK, these teams include psychiatrists who are dedicated to the field of
intellectual disabilities. For example, the Royal College of Psychiatrists has published
diagnostic criteria for psychiatric disorders specifically for use with people with intellectual
disabilities.
10
People with intellectual disabilities should be able to use the same services as
everyone else, as much as they are able to.
Because primary care is the main point of contact for people with intellectual disabilities
accessing health care, as it is for everyone else, any barriers and inequities there must first be
addressed to avoid premature deaths in hospital or at home in the future. Annual health
checks of these patients undertaken by primary health care professionals—reported in the two
papers by Buszewicz and colleagues,1 and Cooper and colleagues2—build on a substantial
body of work, for which all of these authors have a strong track record, and are not steps but
leaps in the right direction. The study by Buszewicz and colleagues is population based, and
will allow for longitudinal surveillance, because these annual health checks develop and
improve health over time (eg, reductions in premature mortality).
The Equality Act 2010 in the UK requires all providers of health and social care to make
reasonable adjustments to their services to ensure that people with disabilities have equitable
access and treatment. One of the main barriers that people with intellectual disabilities
experience is that health-care professionals are not aware of their particular needs; this
situation can even result in so-called diagnostic over-shadowing (ie, not treating a disorder
because it is seen as being part of the person's intellectual disabilities), or exclusion of the
patient from routine health-screening programmes (eg, some people with intellectual
disabilities might not be able to participate in routine health screening programmes [ie,
cervical, breast, or bowel screening], because of communication difficulties or information
not being available in an accessible format). In their papers, both Buszewicz and colleagues1
and Cooper and colleagues2 importantly provide awareness training to the primary-care
professionals before they undertake the health checks. Awareness training for practice nurses
especially makes perfect sense, because they are the primary-care professionals who are most
likely to have responsibility for health screening, monitoring, and promotion within their
practices. Indeed, despite any concerns that some patients with intellectual disabilities might
require longer (eg, double) appointments, Cooper and colleagues2 show that health checks
can be done by practice nurses within 1 h, and that they are cost-effective.
However, these studies had limitations. For example, in Buszewicz and colleagues' study,1
the problems associated with doing large-population studies are evident—data were missing
so that 45% of the participants had to be excluded from regression analyses that require full
data sets, and some of the findings led to just as many questions as answers—eg, why were
smaller practices less likely to participate in the incentivised scheme than larger practices?
And why were patients with intellectual disabilities more likely to be newly diagnosed with
epilepsy within the non-incentivised practices? (Although people with intellectual disabilities
can be up to 50 times more likely to experience epilepsy, compared to the wider population).8
Of these problems, the most alarming statistic for me was that more than a third of the adults
with intellectual disabilities were not identifiable on the database because of a simple coding
omission, and were thus not offered a health check, which can pick up previously
unidentified health needs. Action must be taken to address this unacceptable situation—one
avoidable death is one too many.
References
1. Buszewicz M, Welch C, Horsfall L, et al. Assessment of an incentivised
scheme to provide annual health checks in primary care for adults with
intellectual disability: a longitudinal cohort study. Lancet Psychiatry 2014;
published online Nov 27
2. Cooper S-A, Morrison J, Allan L, et al. Practice nurse health checks for
adults with intellectual disabilities: a cluster-design, randomised
controlled trial. Lancet Psychiatry 2014; published online Nov 27
3. Mansell J, Ashman B, MacDonald S, Beadle-Brown J. Residential care in
the community for adults with intellectual disability: needs,
characteristics and services. J Intellect Disabil Res 2002; 46: 625–33.
4. Baxter H, Lowe K, Houston H, Jones G, Felce D, Kerr M. Previously
unidentifi ed morbidity in patients with intellectual disability.
Br J Gen Pract 2006; 56: 93–98.
5. Smiley E, Cooper S-A, Finlayson J, et al. Incidence and predictors of
mental ill-health in adults with intellectual disabilities. Br J Psychiatry
2007; 191: 313–19.
6. Martinez-Leal R, Salvador-Carulla L, Linehan C, et al. The impact of living
arrangements and deinstitutionalisation in the health status of persons
with intellectual disability in Europe. J Intellect Disabil Res 2011;
55: 858–72.
7. Beange H, McElduff A, Baker W. Medical disorders of adults with mental
retardation. Am J Ment Retard 1995; 90: 595–604.
8. Emerson E, Hatton C. Health inequalities and people with intellectual
disabilities. Cambridge, Cambridge University Press, 2014.
9. Heslop P, Blair P, Fleming P, Hoghton M, Marriot A, Russ L. The
Confi dential Inquiry into premature deaths of people with intellectual
disabilities in the UK: a population-based study. Lancet 2013;
383: 889–95.
10. Royal College of Psychiatrists. DC-LD (Diagnostic criteria for psychiatric
disorders for use with adults with learning disabilities). London: Royal College of
Psychiatrists 2001