Learning Disabilities Public Health Observatory & iHal
Published August 24, 2015
Passing from the category of the given into the category of the intolerable: Health inequalities, people with learning disabilities, and the work of the Learning Disabilities Public Health Observatory. Chris Hatton, Lancaster University and the Public Health England Learning Disabilities Team
In the past 15 years, arguably starting with Valuing People (Department of Health, 2001) stating as its first key health action: “Action to reduce health inequalities”, the poorer health, early death and worse access to decent health services has steadily risen up the policy (and research) agenda in England and internationally (see Emerson & Hatton, 2014). Reports highly critical of the way that health services neglected or (mis)treated people with learning disabilities (Disability Rights Commission, 2006; Mencap, 2007) resulted in the English government setting up an independent inquiry, reporting asHealthcare for All (Michael, 2008). Among other recommendations, including setting up the landmark Confidential Inquiry into the Premature Deaths of People with Learning Disabilities (Heslop et al., 2013), there was a recommendation that the English Department of Health should establish a national specialist Public Health Observatory on learning disability in order to ‘raise awareness in the health service of the risk of premature avoidable death, and to promote sustainable good practice in local assessment, management and evaluation of services’ (Michael, 2008).
Following this recommendation, the Learning Disabilities Specialist Public Health Observatory (which has run through a few renaming’s, but has the consistent label of Improving Health and Lives or IHaL; www.ihal.org.uk) began in April 2010, and currently has a contract as part of Public Health England through to March 2017. IHaL is quite unusual in that right from the start it has been a consortium of public health experts (now based in Public Health England), academics (at Lancaster University, of which I am one) and experts in analysing and developing policy and good practice (at the National Development Team for Inclusion).
We have three main aims in IHaL.
First, we try to add to and share collective public health knowledge through the analysis, collation and dissemination of information, and to make this knowledge freely available through reports and factsheets (including easy read versions) – see www.ihal.org.uk/publications. Many of these are regular (often updated every year), including:
An overview of national statistical information from government departments relevant to the lives of people with learning disabilities (ihal.org.uk/publications/1241/People_with_Learning_Disabilities_in_England_2013)
Regularly updated Local Health Profiles for each Local Authority in England based on 23 indicators relating to the health and healthcare of people with intellectual disabilities (ihal.org.uk/profiles/)
Collating information from local areas about their progress in providing better support for people with learning disabilities (the Learning Disabilities Joint Self Assessment Frameworkihal.org.uk/publications/1246/Joint_Learning_Disabilities_Health_and_Social_Care_Self-Assessment_Framework_2014) and people with autism (the Autism Self Assessment Frameworkwww.ihal.org.uk/projects/autism2013)
Reports on coverage of annual health checks for people with learning disabilities (ihal.org.uk/publications/1239/The_Uptake_of_Learning_Disabilities_Health_Checks,_2013_to_2014)
We also produce less regular reports and factsheets on important topics, using:
New analyses of existing information, or information provided for IHaL, such as the recent report on the prescribing of psychoactive drugs
Overviews of the research evidence concerning health inequalities and people with learning disabilities that often include new analyses of existing datasets, such as the recent report on the health inequalities experienced by children with learning disabilities
Systematic reviews of important health topics for people with learning disabilities that have not been systematically reviewed before, such as the recent reviews of the prevalence and mortality risk associated with epilepsy amongst people with learning disabilities (ihal.org.uk/publications/1245/Epilepsy_Factsheets)
Surveys, for example this report of reasonable adjustments for people with learning disabilities reported by health trusts in England (ihal.org.uk/publications/947/Reasonable_Adjustments)
We are also always looking for examples of good practice to add to our online, searchable database of reasonable adjustments (www.ihal.org.uk/adjustments/).
Identifying (and filling) gaps in knowledge
Second, we identify significant gaps in information and knowledge, and try to work with relevant agencies to fill these gaps and get better information.
So far, new questions to better identify people with learning disabilities in general national surveys are being piloted in the annual Health Survey for England (www.hscic.gov.uk/healthsurveyengland) and the latest English Adult Psychiatric Morbidity Survey (www.natcen.ac.uk/our-research/research/adult-psychiatric-morbidity-survey/). If these questions work well, we hope that we will be able to identify and analyse the experiences of people with learning disabilities within these broader surveys.
We are also close to getting information via the Health and Social Care Information Centre from GP information systems, which will describe at a local level the demography (including mortality) of people with learning disabilities, the prevalence of important long-term illnesses, the management and outcomes of those illnesses, relevant aspects of health related lifestyles and the advice provided for them, and the preventive health interventions people receive.
Advice and support
Third, we provide advice and support to enable people involved in commissioning at local and national level, service providers and people who use services and their families to make better use of the information that is available.
We have produced a number of ‘reasonable adjustments’ guidance reports, combining research evidence, information on relevant legal, policy and practice issues, and example of good practice. Just this year these guidance reports have included: improving support for people with learning disabilities in acute hospitals ,
doing effective health checks for people with learning disabilities ,
improving services for people with learning disabilities and epilepsy ,
and improving end of life services for people with learning disabilities
Major topics and guidance documents are accompanied by free learning events around England (www.ihal.org.uk/events/), and we also keep people updated via twitter (@ihal_talk).
What is IHaL for? A personal view
The poorer health and early death of people with learning disabilities has been common knowledge for a long, long time. In 1929, the estimated life expectancy of people with Down syndrome in the USA was 9 years (Yang, Rasmussen & Friedman, 2002). So why has sustained policy interest in improving the health of people with learning disabilities only been visible for the last 15 years or so?
For me, the bundle of assumptions and attitudes that add up to a broadly eugenicist approach casts a long shadow. Although likely to be wrapped up in euphemisms nowadays, how far away are the attitudes of many people (including some medical and public health professionals) from this 1899 statement from Mary Dendy (a doyenne of eugenics activism): “No one can promise to cure the sufferers who are such a curse to themselves and to society. No one can make the faulty brain into a perfect one, change the diseased rickety body for one glowing with health and beauty, strengthen the feeble will so that it has all the power of the highest and strongest of God’s creatures. These things are beyond the skill of man.” (quote in Jackson, 1996).
My personal view is that the Learning Disabilities Team in Public Health England is part of a coalition trying to challenge these assumptions, by making the health inequalities experienced by people with learning disabilities visible, by arguing that learning disability in itself is not a health condition and that therefore health inequalities are not an inevitable function of learning disability, and by helping those trying to do something about health inequalities (of which learning disability nurses are a really important group) by getting the best information we can get into their hands in ways they can use.
I think we’ve done some good work so far, but we can be a whole lot better and we always want to hear people’s views about how we can do a better job. Our ultimate aim is summed up in this quote from Sir Geoffrey Vickers in 1958: “The landmarks of political, economic and social history are the moments when some condition passed from the category of the given into the category of the intolerable. I believe that the history of public health might well be written as a record of successive re-definings of the unacceptable.” This is where we need to get to about the health inequalities experienced by people with learning disabilities.
Department of Health (2001). Valuing People: A new strategy for learning disability for the 21st century. London: TSO.
Disability Rights Commission. (2006). Equal Treatment – Closing the Gap. London Disability Rights Commission.
Emerson, E., & Hatton, C. (2014). Health Inequalities and People with Intellectual Disabilities. Cambridge: Cambridge University Press.
Heslop, P., Blair, P., Fleming, P., Hoghton, M., Marriott, A., & Russ, L. (2013). Confidential Inquiry Into Premature Deaths of People with Learning Disabilities. Bristol: Norah Fry Research Centre.
Jackson, M. (1996). Institutional provision for the feeble-minded in Edwardian England: Sandlebridge and the scientific morality of permanent care. In D. Wright & A. Digby (eds.), From idiocy to mental deficiency: Historical perspectives on people with learning disabilities (pp. 161-183). London: Routledge.
Mencap. (2007). Death by Indifference. London: Mencap.
Michael, J. (2008). Healthcare for All: Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities. London: Independent Inquiry into Access to Healthcare for People with Learning Disabilities.
Vickers, G. (1958). What sets the goals of public health? The Lancet, 271, 599-604.
Yang, Q., Rasmussen, S.A. & Friedman, J.M. (2002). Mortality associated with Down’s syndrome in the USA from 1983 to 1997: A population-based study. The Lancet, 359, 2019-1025.
* Thanks to Steve Hardy for helping get this great piece of work onto the website