Pretty much wherever you look in the world a similar pattern is seen: people with an intellectual disability have more health problems, a high level of serious conditions such as epilepsy and certain specific patterns of health needs associated with the cause of their disability. This pattern, easily recognisable by families and carers alike, is sadly complemented by an equally consistent pattern of a lack of appropriate health care. This can be summarised as poor health promotion uptake, inadequate care for serious chronic illnesses, unrecognised health need and poor access to health care. As such, people with a learning disability suffer great inequality in their health as compared with that of the general population.
Are people with intellectual disability less healthy?
Common complex health problems in this population
Some serious conditions are seen so much more commonly in this population that arguably special provision should be available. Of these some of the most common are (1) epilepsy, (2) sensory deficit, and (3) behavioral and psychological disturbance.
Health problems associated with the cause of the intellectual disability: An issue of increasing importance when planning an individual’s care is recognising that having a specific cause of the learning disability, such as Down Syndrome, can predict potential health risks and that these should therefore be planned for. Clear examples of these would be how individuals who have Down Syndrome are prone to having an under-active thyroid gland or individuals with Rett Syndrome are prone to scoliosis, curvature of the spine. In these cases regular blood tests for thyroid function in people with Down Syndrome, or regular review for people with Rett Syndrome, may alleviate physical ill health.
Unrecognised health needs: A very consistent finding in the research is that when adults with an intellectual disability are offered structured examinations, as many as 50% will be discovered to have health needs not previously recognised. These will range from the relatively minor, but important, such as earwax; through to serious life limiting conditions such as cancer.
An inequality in health? Being healthy is a major component of a good quality of life and people with an intellectual disability have a right to a high quality of health. Of course, the general population is not always healthy either so our aim should be that people with intellectual disability are at least as healthy as their peers without intellectual disability. Table one highlights some areas of inequality in health experienced by PWID.
Are there any reasons for these inequalities?
Before thinking about how to change the situation, it is worth thinking about why the inequalities occur. Several reasons have been put forward:
Poor physical access: It has been suggested that inadequate access to GP and hospital facilities may affect an individuals’ quality of care. Communication. Most of us let our doctors know our problems verbally, individuals with major communication difficulties may have great difficulty expressing their symptoms and this leads to problems making the diagnosis. A very clear example of this is that of problems associated with reflux oesophagitis and ulcer pain. We know reflux is very common in people with intellectual disability, yet it is very rarely presented as a problem. The condition is often only picked up when the individual shows other signs such as poor sleep, poor appetite, weight loss or vomiting, as compared to an individual with good language who would complain of discomfort and acid burn.
Behaviour problems: These have been suggested as a reason why individuals get inadequate, or no, physical examinations. This is probably a spurious complaint, but certainly for complex investigations such as brain scans this can be a real problem.
The knowledge and attitudes of doctors and other professionals: This is sadly a common complaint amongst carers and probably reflects, in some cases, a real issue of poor knowledge and attitude in a minority of professionals. There is certainly in most countries little specific teaching for medical students on intellectual disability, nor much more following their graduation.
What can be done to stop these inequalities?
Whilst a constant drive to improve carer and individual knowledge, and in particular to ensure that those who advocate for individuals’ health are skilled, these changes are small in comparison to the problems the system engenders. Thus the responsibility for changing this situation lies squarely on the shoulders of those who organise and deliver health care.
Primary care: Primary care is currently inadequate for people with an intellectual disability. Major changes are needed in the quality of care provision. The problem is that it is just not set up to meet individuals’ needs. It relies too much on ‘on-demand’ access, often has insufficient time to address complex problems, and GP education rarely covers this population. Certain steps can be made by GPs or practices to organise care for this population such as recall and audit. However, a more fundamental change such as the provision of health checks, recently introduced in Wales, is the only way likely to make enduring and meaningful change.
Health checks-what, why, where, who and when?
What? – a health check for an adult with an intellectual disability is a structured history and examination of the individual which must contain a detailed history of physical and mental change, a physical examination and precise questions on serious chronic health conditions seen in people with an intellectual disability. In Wales a structured format is followed by GPs who participate in health checking (http://www.wales.nhs.uk/sites3/docmetadata.cfm?orgId=480&id=65346 ) known as the Welsh Health Check.
Why? – It seems from the evidence that health checks lead to a reduction in the inequality in health care that I have discussed. They find unrecognised physical illness and they increase the amount of health promotion individuals get. Where and Who? – In general practice by the GP and a practice nurse, if available. When? – at present it seems they should be performed annually.
It seems that despite our 21st century health care, adults with an intellectual disability can only aspire to 20th century health. Individuals, families and other carers can, and do, make great strides to reduce these deficits. The tools exist to reduce these inequalities through structured improved primary health care and efforts need to be made to make such an approach a reality for this population.