Plugging the Gaps
I have entitled my response "Plugging the Gaps", because although the
previous articles go a long way to beginning to look at the issues around
the provision of healthcare for people with Intellectual Disabilities, it
is my experience that very few of the findings, recommendations, and
services, being developed for people with Learning Disabilities, are being
applied to people who are registered disabled with Learning Difficulties.
This particular group of patients appear to be falling between every
safeguard in place in today's NHS, and even where progress appears to be
underway for the Intellectually Disabled group at large, this does not
appear to affect the situation of people with Learning Difficulties.
Several studies have found that large numbers of adults with Learning
Difficulties have common health problems, which have not been addressed.
Wilson & Haire (1990) found that among 65 people with Learning
Difficulties, 80% had undetected health problems. Meehand, Moore &
Barr (1995) screened 191 adults with Learning Difficulties and found that
83% had undetected and treatable conditions. I would be interested to see
more up to date information on this, but could not obtain any in time for
There are a number of issues recorded in the literature, in relation
to problems with accessing health care services, for this group of people.
In many cases, neither Learning Disability services, nor mental
health services consider this group of patients to be appropriate for
referral, assessment or treatment. This includes voluntary sector services
like Mencap and Mind, and there are very few agencies, which deal
specifically with Learning Difficulties. Discussions I have had with
various adults with Learning Difficulties indicate that they are at a loss
as to where else they can turn for assistance or advice, as any existing
support groups are inevitably very small, fragmented, and have little
influence in professional circles.
My experience also indicates that GP's are at a loss as to where is
the most appropriate place to refer such patients. The end result of
which, is that even when medical problems are identified which require
specialist intervention due to Learning Difficulties themselves, GP's have
very few treatment options open to them for specialist attention. This in
turn leads to inappropriate referrals, and wasted NHS consultation time.
One example of such a gap, is the prevalence of substance abuse and
eating disorders (and obesity) among people with Attention Deficit
Disorder. It has been estimated that between 25 and 50% of adults with
ADD, use alcohol and other drugs, including food, to soothe their ADD
symptoms (Schubiner, Tzelepis, Isaacson, Warbasse III, Zacharek and
Musial, 1995; Martindale, 1995). However, adults with untreated ADD
symptoms are frequently assessed by mental health services rather than
specialist Learning Difficulty services in the UK, and it is alarmingly
common for these individuals to have five or more different diagnoses over
time, depending on which team is assessing them. This has obvious
implications for the consistency of their treatment, and the credibility
of their diagnoses.
Another issue, which affects the accessibility of services, is the
complexity of the health problems, which some people with learning
difficulties experience. There is also some evidence to suggest that they
are more likely to experience some physical and sensory problems, as well
as physical and mental health problems (Keywood, Fovargue, & Flynn;
Howells, 1997; Kerr et al,1996).
For those of us who are carers to such individuals, it is very
evident that this lack of healthcare services is not only affecting their
quality of life, but is significantly affecting the life expectancy and
productivity of this group of people.
Howells, G (1997) A general practice. In O’Hara J & Sperlinger A
Eds. (1997) Adults with Learning Disabilities: A practical approach for
health care professionals. Wiley Publications.
Keywood, K. Fovargue, S. & Flynn, M. (1999) Best Practice?
Healthcare decision making by, with and for adults with learning
disabilities. National Development Team.
Martindale, M (1995) A Double Edged Sword. Student Assistant Journal.
Nov 1995: 1.
Meehan, S, Moore, G, and Barr, O. (1995) Specialist services for
people with learning disabilities. Nursing Times 91 (19) p 32-34.
Schubiner, Tzelepis, Isaacson, Warbasse III, Zacharek and Musial
(1995) The Dual Diagnosis of Attention Deficit/Hyperactivity Disorder and
Substance Abuse: case reports and literature review. The Journal of
Clinical Psychiatry, 56, No.4.
Wilson, D. and Haire, A (1990) Health care screening for people with
mental handicap living in the community. BMJ 301, p1379-1380.
Competing interests: No competing interests