Some patients have particular problems
Cooper et al write that, “People with intellectual disabilities
comprise about 2% of the UK population”, and, “Their health needs differ
and need to be recognised and met.”
Within this broad epidemiological brushstroke, there lie some
patients who have particular problems that make their situation worse.
Included within that number are those with early-acquired brain
damage, those with autism or autistic syndrome and those who have little
or no speech. Many of these will be non-autonomous. They will not be able
to adequately describe their symptoms or even recognise that what they are
feeling are symptoms.
The authors go on to write that, “This contributes to ongoing health
inequality, chronic ill health, and premature death. Many biological,
psychological, social, and developmental factors, as well as life
experience, contribute to this inequality. People with intellectual
disabilities also experience access barriers in using health services.”
It is apparent to those of us who have family members in this
category of patient just how difficult it is for GPs to doctor effectively
for such patients who live away from home. Thus many patients in this
category will suffer because they are unable to express themselves in a
way that promotes good health care.
Another important factor for, “people with intellectual
disabilities”, is that some of them are continuously under the regimen of
psychiatrists because they have spent some of their lives in ‘mental
handicap’ hospitals. This is an oppressive regime and one that is
difficult to understand. For those with autism or brain damage,
psychotropic drugs can do more harm than good. Because they are non-
autonomous and cannot complain they have to suffer this oppression and
that causes more health problems. One particular reason for this is that
the side effects of these drugs are suffered silently. Most counties now
have a learning disability service, but the psychiatrist dominates even
When family members try to intervene, even though they know their
relative better than anyone, they are rebuffed. This rebuff will probably
come with a suggestion that because the relative is non-autonomous the
medical fraternity has control and the relative none.
Again the authors write, “The amount of evidence relating to people
with intellectual disabilities is less than for other groups, hence
relevant issues are unlikely to be selected for development of
guidelines.” This could be remedied, in part, by involving family members
more than is done presently.
The UK Disability Discrimination Act 1995, and the Human Rights Act
1998, are not usually brought into play unless the family member
contemplates legal action. It is of course the case that, “... these laws
require services to make reasonable adjustments and accommodations”; and,
“... the reality is that legislation does not yet seem to have translated
into improved health status for people with intellectual disabilities”.
Father of daughter with intellectual disabilities
Competing interests: No competing interests