Health inequalities experienced by people with a learning disability
People with a learning disability experience health inequalities
On average, people with a learning disability have worse health than people without a learning disability. This is true for both physical health and mental health (Emerson et al. 2011). Partly this is because people with a learning disability are more likely to have secondary disabilities and other health problems than the rest of the population (Cooper et al. 2007; Haverman et al. 2010; Moseley et al. 2011; McCarron et al. 2011).
However, a significant proportion of the differences in health between people with a learning disability and the general population cannot be explained by an underlying condition and are to do with the way people with a learning disability are treated by health, mental health and social care services, as well as lifestyle factors (Emerson et al. 2011; Emerson and Baines 2010; Holly and Sharp 2014; Townsend 2011).
People with a learning disability are more likely to die at a younger age
The Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) found an average age of death of 65 for men and 63 for women in a sample of 247 people with a learning disability in the UK. This is significantly less than the average age of death of 78 for men and 83 for women in the general population (Heslop et al. 2013). In other words, on average women with a learning disability died 20 years sooner than women in the general population, and men with a learning disability died 13 years sooner than men in the general population.
CIPOLD also reported the average age of death for different levels of impairment:
- 67.5 for people with a mild learning disability
- 64 for people with a moderate learning disability
- 59 for people with a severe learning disability
- 46 for people with profound and multiple learning disabilities
Poor quality healthcare causes health inequalities and avoidable deaths
The Confidential Inquiry into premature deaths of people with a learning disability found that 38% of people with a learning disability died from an avoidable cause, compared to 9% in a comparison population of people without a learning disability (Heslop et al. 2013, p. 92). Note: Mencap uses the term avoidable death for deaths that could have been avoided by the provision of good quality healthcare.
Allerton and Emerson (2012) analysed large-scale data to investigate the access to good quality healthcare for British adults with a chronic health condition or impairment. 309 people in the sample had a learning disability. The research found:
- 40% of people with a learning disability reported a difficulty using health services, compared to 18% of people with no chronic health condition or impairment
- 12% of people with a learning disability reported a lot of difficulty using health care services, compared to just 3% of people with no chronic health condition or impairment.
The average age of death for people with a learning disability is 65 for men and 63 for women
38% of people with a learning disability die from avoidable causes, compared with 9% of the general population
Only 64% of adults with a learning disability on the GP or health register in England received an annual health check in 2014-15
A number of barriers are stopping people with a learning disability from getting good quality healthcare
These barriers include:
- a lack of accessible transport links
- patients not being identified as having a learning disability
- staff having little understanding about learning disability
- failure to recognise that a person with a learning disability is unwell
- failure to make a correct diagnosis
- anxiety or a lack of confidence for people with a learning disability
- lack of joint working from different care providers
- not enough involvement allowed from carers
- inadequate aftercare or follow-up care.
(Heslop et al. 2013; Tuffrey-Wijnes et al. 2013; Allerton and Emerson 2012)
Annual health checks can reduce health inequalities, but not enough people with a learning disability get them
Annual health checks are designed to promote the early detection and treatment of physical and mental health problems, which can lead to better health outcomes (Perry et al. 2010). Although the content and delivery of health checks have differed over time and across the country, a systematic review found that they were consistently effective in identifying previously undetected health conditions (Robertson et al. 2010).
Annual health checks are aimed at those people with a learning disability thought to have the greatest need. In England it is estimated that 240,000 people with a learning disability should be eligible for an annual health check (Glover 2014).
Annual health checks will only be offered to people whose GP has registered them as having a learning disability or associated condition. The number of people with a learning disability on GP registers is much smaller than the likely true number of people with a learning disability, although it should include those with the highest need. Of all the people with a learning disability on a GP or health register in England, approximately 63% receive an annual health check. This has increased by 19% since 2014.
There are a number of possible reasons why more people with a learning disability don’t receive health checks
- Some practices do not participate in the health check scheme. If a person is on the learning disability register and their GP practice is not part of the health check scheme, they are still meant to be included in the number of people eligible for health checks. However, in some cases they have not been included
- Some people with a learning disability are known to GPs but do not receive Local Authority services
- In some areas not everyone who could be eligible for a health check is included on the register.
(Emerson et al. 2011; Glover and Niggebrugge 2013)
In addition, some people are invited to take part in a health check but do not attend. Studies have shown that this can be improved through nurses or health facilitators encouraging attendance with follow up phone-calls and reminders (Perry, 2010; McConkey et al, 2015).
- Allerton, L. and Emerson, E. (2012) ‘British adults with chronic health conditions or impairments face significant barriers to accessing health services,’ Public Health, 126: 920- 927.
- Cooper, S.-A., Smiley, E., Morrison, J., Williamson, A. & Allan, L. (2007) ‘Mental ill-health in adults with intellectual disabilities: prevalence and associated factors,’ The British Journal of Psychiatry, 190: 27-35.
- Emerson, E., and Baines, S. (2010) Health Inequalities and People with Learning Disabilities in the UK : 2010. Available online
- Emerson, E., Baines, S., Allerton, L., & Welch, V. (2011) Health Inequalities and People with Learning Disabilities in the UK : 2011. Available online
- Glover, G. (2014) The Uptake of Learning Disability Health Checks 2013 to 2014. Public Health England. Available online.
- Glover, G., and Niggebrugge, A. (2013). The Uptake of Health Checks for Adults with Learning Disabilities 2008/9 to 2012/13. Available online.
- Haveman, M., Heller, T., Lee, L. Maaskant, M, Shooshtari, S and Strydom, A. (2010) ‘Major health risks in aging persons with intellectual disabilities: an overview of recent studies,’ Journal of Policy and Practice in Intellectual Disabilities, 7(1), 59-69.
- Heslop, P., Blair, P., Fleming, P., Hoghton, M., Marriott, A., & Russ, L. (2013) Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD): Final Report. Norah Fry Research Centre. Available online.
- Holly, D. and Sharp, J. (2014) ‘Addressing health inequities: coronary heart disease training within learning disabilities services,’ British Journal of Learning Disabilities, 42(2): 110-116.
- McCarron, M., Swinburne, J., Burke, E., McGlinchey, E., Mulryan, N., Andrews, V., Foran, S. and McCallion, P. (2011) Growing Older with an Intellectual Disability in Ireland in 2011: First Results from The Intellectual Disability Supplement of The Irish Longitudian Study on Ageing. School of Nursing and Midwifery, Trinity College Dublin. Available online.
- McConkey, R., Taggart, L., and Kane, M. (2015) ‘Optimizing the uptake of health checks for people with intellectual disabilities,’ Journal of Intellectual Disabilities, 19(3): 205–214.
- Moseley, D., Tonge, B., Bereton, A. and Einfeld, A. (2011) ‘Psychiatric comorbidity in adolescents and young adults with autism,’ Journal of Mental Health Research in Intellectual Disabilities, 4: 229-243.
- ONS (2012) Deaths Registered in England and Wales, 2011. Available online.
- ONS (2013) Deaths Registered in England and Wales, 2012. Available online.
- ONS (2015) Avoidable Mortality in England and Wales. Statistical bulletin. Available online.
- Perry, J., Kerr, M., Felce, D., Bartley, S. and Tomlinson, J. (2010) Monitoring the Public Health Impact of Health Checks for Adults with a Learning Disability in Wales. Available online.
- Robertson, J., Roberts, H., and Emerson, E. (2010). Health Checks for People with Learning Disabilities: a Systematic Review of Evidence. Available online.
- Townsend, C. (2011) ‘Developing a comprehensive research agenda for people with intellectual disability to inform policy development and reform,’ Journal of Policy and Practice in Intellectual Disabilities, 8(2): 113-124.
- Tuffrey-Wijne, I., Giatras, N., Goulding, L., Abraham, E. and Fenwick, L. (2013) ‘Identifying the factors affecting the implementation of strategies to promote a safer environment for patients with learning disabilities in NHS hospitals: a mixed-methods study,’ Health Services and Delivery Research, 1(13). Available online.