A number of recent studies have shown that a ‘hidden majority’ of adults identified in childhood as having a learning disability are not identified as such within adult heath or social care services.
The studies analysed data from the Understanding Society survey, which follows the lives of 40,000 UK households to provide valuable evidence about 21st century life.
The survey collects information from more than 20,000 adults aged 16-49 years about many aspects of their lives, including their health and wider social determinants.
Although it does not directly assess learning disability, we have identified a subgroup of around 300 people likely to have a learning disability through a combination of self-reported educational attainment and scores on cognitive tests. This subgroup is highly likely to be part of the ‘hidden majority’.
Why is this important?
Although we are finding out much more about the health inequalities experienced by children and adults with learning disabilities using services, it is much harder to track the experiences of this hidden majority – around 700,000 people in England.
We found that people with learning disabilities were much more likely than other people in the survey to experience poorer health across a range of indicators.
For example, they were more likely to experience poorer self-rated health, psychological distress, arthritis, diabetes, epilepsy or multiple morbidity.
A number of risk factors for poor health were more common for people with learning disabilities including obesity, lower grip strength and poor lung function.
Behavioural risk factors were also more common such as poor diet, low levels of physical activity, smoking, alcohol use and hospital admission for a newly diagnosed condition.
Interestingly however, many physical health conditions and risk factors were equally common amongst people with learning disabilities and other people in the survey, including asthma, respiratory disorder, thyroid disorder, high blood pressure and hypertension.
The importance of wider social determinants
It is important to recognise that a learning disability is not in itself a health condition.
While some syndromes are linked to particular health issues (for example Down syndrome is linked to congenital heart problems and hypothyroidism), most syndromes are less prevalent in the hidden majority population (those not recognised by the health sector as having a learning disability) and any linked health issues are usually treatable.
But, pervasive socio-economic inequalities are experienced by this group of people with learning disabilities, who were less likely to be ‘doing alright’ financially or ‘living comfortably’, be employed for 16 hours or more per week, live in a high quality neighbourhood, feel safe outside in the dark, have two or more close friends or go out socially.
People with learning disabilities were also more likely to have experienced threatened or actual violence and being a victim of hate crime.
The poorer health of people with learning disabilities can therefore consistently be accounted for by differences in social determinants.
Once we allowed for differences in socio-economic factors and opportunities for social participation in the local environment, the increased odds of most health problems and risk factors amongst people with learning disabilities dropped dramatically.
For example, the odds of having diabetes dropped from 3.9 to 2.4, and the odds of obesity dropped from 2.1 to 1.7. The odds of being a current smoker dropped from 3.6 to 2.0.
For a small number of health indicators, there was no longer any significant difference between people with learning disabilities and other people once social determinants were taken into account. For example, the odds of a self-reported mental health problem dropped from 1.7 to 1.1.
This clearly suggests that this group of adults are likely to experience pervasive poorer health and greater risk factors for poor health due, at least partly, to inequalities in the wider socio-economic determinants of health.
What does this mean for public health?
Public health interventions and strategies need to recognise this large group of people with cognitive limitations (for example in numeracy, literacy and memory) that in most cases are not identified by their GP.
This has implications for providing public information, for behavioural interventions and for incentive strategies.
The implication for healthcare public health is that among people using primary and secondary health care services, significant numbers of those not formally identified as learning disabled may struggle to understand complex questions about their health or instructions about how to look after themselves.
People with learning disabilities, identified or not, also need to be recognised in public health policy relating to discrimination and violence. In all of these areas the people concerned may or may not consider themselves disabled.
A more routinely inclusive public health endeavour is likely to have a positive impact in reducing health inequities both within the hidden majority and beyond it. Without an inclusive approach, public health runs the risk of widening these inequities rather than reducing them.
For a list of reference papers please contact the PHE Learning Disabilities Team at firstname.lastname@example.org