The establishment of the world's first specialist learning disabilities public health observatory, providing research to inform policy and commissioning
Submitting InstitutionLancaster University
Unit of AssessmentAllied Health Professions, Dentistry, Nursing and Pharmacy
Summary Impact TypeSocietal
Research Subject Area(s)
Medical and Health Sciences: Public Health and Health Services
Economics: Applied Economics
Studies In Human Society: Policy and Administration
Summary of the impact
Lancaster research has highlighted the pervasive health inequalities and
inadequate services experienced by people with learning disabilities (LD).
Our 2005 report commissioned by the Department of Health (DH) proposed the
establishment of a specialist LD observatory for England. This proposal
was taken up by a government-commissioned independent inquiry and
The same team is one of three partners who, through a competitive tender
process, have since 2010 been operating the first specialist LD public
health observatory in the world. The observatory collects, analyses and
summarises health information to improve the data available to DH and
other stakeholders thereby improving the health of people with LD.
Emerson, Hatton (both Professors) and Robertson (Lecturer) moved to
Lancaster University in 2000, and from 2000-2008 conducted a stream of
research projects that were fundamental to making the case for a
specialist LD public health observatory in England, including:
2.1 A DH commissioned first national survey of 3,000 people with
LD in England, including data on social determinants of health, access to
health services, and health outcomes (with British Market Research Bureau
2002-2004; 3.13; 3.1), revealing the socio-economic and health
inequalities experienced by people with LD compared to the general
2.2 A DH funded project to collate and analyse existing national
statistics concerning people with LD (2004-2006; 3.12, 3.2). A major
proposal from this work was the establishment of a specialist LD
2.3 Studies for councils, commissions from Mencap and DH and an NIHR
study to develop national statistical models for predicting the future
population of adults with LD in England requiring services
(2000-2009; 3.8), which predict sustained increases in the population of
adults with LD.
2.4 A Disability Rights Commission funded study partly to analyse inequalities
in access to primary care for people with LD (with Sainsbury Centre
2005; 3.11), revealing inequalities in access.
2.5 Studies conducting secondary analyses of nationally representative
population surveys (2006-2010; 3.9, 3.10, 3.3), again revealing the
scale of the socio-economic and health inequalities experienced by
people with LD, and the extent to which these inequalities could be
accounted for by differences in socio-economic position rather than
All these projects were peer-reviewed, open competition tenders.
From 2010, much of the Lancaster research (Emerson, Hatton, Robertson)
has been conducted within the LD public health observatory commissioned by
DH through open competitive tender and continuing as part of Public Health
England (PHE). This collaboration involves public health experts within
PHE, a third sector organisation (National Development Team for Inclusion,
NDTi) and Lancaster University. Research led by the Lancaster group
2.6 Regular systematic reviews of available evidence concerning
the health inequalities experienced by people with LD and the uptake
and/or effectiveness of health services (3.5).
2.7 Regular reports documenting national statistics concerning
people with LD (3.4).
2.8 Improved modelling of population projections for adults with
LD (also supported by NIHR).
2.9 Secondary analysis of datasets concerning services for people
with LD (e.g. national inspections of inpatient services collected by the
Care Quality Commission).
2.10 Surveys of current practice in relation to people with LD
(e.g. reasonable adjustments in NHS acute trusts).
References to the research
3.2 Hatton, C., Emerson, E. & Lobb, C. (2005). Evaluating the Impact
of Valuing People. Report of Phase 1: A review of existing national
datasets. Institute for Health Research, Lancaster University.
3.3 Emerson, E., & Hatton, C. (2007). The mental health of children
and adolescents with intellectual disabilities in Britain. British Journal
of Psychiatry 191, 493-499. doi: 10.1192/bjp.bp.107.038729
3.4 Emerson, E., Hatton, C., Robertson, J., Roberts, H., Baines, S.,
& Glover, G. (2011). People with Learning Disabilities in England
2010. Durham: Improving Health & Lives: Learning Disability
3.5 Robertson, J., Roberts, H., Emerson, E., Turner, S., & Greig, R.
(2011). The impact of health checks for people with intellectual
disabilities: a systematic review of evidence. Journal of Intellectual
Disability Research 55, 1009-1019. doi: 10.1111/j.1365-2788.2011.01436.x
Key grants (total £3.36 million):
3.6 Learning Disabilities Public Health Observatory (PI Glover, ERPHO;
Hatton, Emerson, Robertson), 2013-2014, PHE, £550,000.
3.7 Learning Disabilities Public Health Observatory (PI Wilkinson, NEPHO;
Emerson, Hatton), 2010-2013, DH, £1.7 million.
3.8 Estimating future need for social care services for younger disabled
adults (PI Emerson, Hatton, Robertson), NIHR School for Social Care
Research, 2010-2011, £98,000.
3.9 The association between child disability and poverty dynamics in
British families (PI Emerson), ESRC, 2008-9, £74,000.
3.10 Factors associated with well-being and distress in parents of
infants and young children with delayed development in the Millennium
Cohort Study (PI Emerson), Nuffield Foundation, 2007-8, £10,000.
3.11 Health inequalities faced by people with mental health problems and
people with learning disabilities (PI: Chiara Samele, Sainsbury Centre for
Mental Health; Emerson), Disability Rights Commission, 2005, £100,000
3.12 Evaluating the impact of Valuing People (PI Hatton; Emerson),
Department of Health, 2004-2006, £230,000.
3.13 The English National Survey of adults with intellectual disabilities
(PI: Sally Malam, BMRB; Emerson), Department of Health, 2002-2004,
All the grants (3.6 to 3.13) were awarded through open competition
nationally, and all the references above (3.1 to 3.5) have been
peer-reviewed. These studies apply rigorous quantitative methodologies
(including sampling, question development, data extraction and data
analysis) to the population of people with learning disabilities. This
research represents an original body of work empirically investigating the
population of people with learning disabilities through a health
inequalities lens, with significance for other researchers beginning to
adopt similar perspectives and more broadly (the topic of this impact case
Details of the impact
From 2000 research by the Lancaster group has revealed the scale and
nature of the health inequalities experienced by the 1.2 million
people with LD in England, the inadequacy of services for this
population, and the potential utility of national statistics (3.1-3.4,
5.1). Our report from a DH commissioned study concerning national
statistics on people with LD (3.2) stated: "The establishment of an
Observatory for Learning Disability Statistics could provide a major
ongoing resource for all stakeholders" (p. 52).
A government commissioned independent inquiry into healthcare for people
with LD (5.2) recommended the establishment of a specialist learning
disabilities observatory: "The Inquiry believes (as suggested by Hatton
et al., 2005) that public health experts have a crucial role to play in
helping to strengthen data and information" (p. 43) and "Recommendation
5. 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, the Department of
Health should establish a learning disabilities Public Health
Observatory" (p. 44).
The Government report Valuing People Now (5.3) accepted this
recommendation and tendered for the first national specialist LD
observatory in the world, to operate from 2010. The Lancaster
University group, with a public health observatory (now in PHE) and NDTi,
won the tender and manage the observatory (known publicly as Improving
Health and Lives; IHaL), which is now located within PHE (5.4, 5.5).
IHaL collects, analyses and summarises information for policy
makers, service commissioners, service practitioners, the third sector,
family members and self-advocates. As IHaL is collaborative, certain
impacts are not attributable to a specific partner — therefore, in this
section we describe impacts where there are clearly identifiable
contributions from Lancaster researchers.
Our website (5.5) is a major vehicle for sharing information, attracting
approximately 40,000 user hits per month as of 31 March 2013.
Examples of reasonable adjustments in health services (set up and
maintained by Lancaster, and cited by DH in 5.6, p. 36) have been viewed
17,459 times. Lancaster-led reports on the IHaL website are also popular;
e.g. the 2011 annual report of statistics (downloaded 4,380 times) and the
2011 report of health inequalities evidence (downloaded 5,866 times)
Another major vehicle for sharing information are regionally based
training and learning events (25 events to 31 March 2013; all with input
from Lancaster staff), with approximately 1,200 people attending. IHaL has
also run two national conferences — our recent conference in March 2013
included a speech from the DH Minister of State, Norman Lamb, who
was highly enthusiastic about IHaL's work (5.7).
An online survey of potential IHaL users in September 2012 reported that
89%-94% of service managers, professionals and commissioners (total n=263)
found the information provided by IHaL to be useful/quite useful and 92%-100%
of these professional groups reported using IHaL information in their
own work (5.6 p. 29, 5.7).
A recent DH progress report identified IHaL as one of its four
specific priorities for improving the healthcare of people with LD
(5.6 p. 28), and stated "The Observatory has dramatically improved the
quality of information available on the health of people with a learning
disability and the health inequalities they experience. As a result, it
has helped promote sustainable good practice, becoming a key source of
evidence for local commissioning, benchmarking and accountability"
(5.6 p. 30).
IHaL, in conjunction with the Royal College of General Practitioners
(RCGP) and the Royal College of Psychiatrists has produced evidence-based
guidance for health service commissioners (Oct 2012). Dr Matt
Hoghton, the LD Champion for RCGP has stated: "The Public Health
Observatory has made a significant impact on the health of people with a
learning disability across all public services. At a time when the NHS
is undergoing a significant reorganisation it is essential they continue
their work in raising these important issues, ensuring there is a robust
evidence base and translating the research into practical advice for all
health and social care workers" (5.7, 5.8).
Accessible versions of IHaL information are also highly valued by
family members and self-advocates, illustrated by this family carer: "The
IHaL Public Health Observatory work has been very important at strategic
and national level with its excellent guides, research and conference
activity. However I have found it really useful on a personal level. I
frequently use the website for info but more often I quote it when
liaising with health professionals and use it to signpost them."
At a national level, IHaL (including Lancaster) staff have regular
meetings with DH policy makers (5.9). IHaL (including Lancaster) staff
have also been invited to report to two meetings of the All Party
Parliamentary Group on Learning Disabilities.
Sources to corroborate the impact
5.1 Policy Manager, MENCAP
5.2 Michael, J. (2008). Healthcare For All: Report of the Independent
Inquiry into Access to Healthcare for People with Learning Disabilities
(pp. 43-44). Independent Inquiry: London.
5.3 HM Government (2009). Valuing People Now: a new three-year
strategy for people with learning disabilities. HM Government:
5.4 Chief Knowledge Officer, Public Health England
5.5 Improving Health and Lives website. http://www.improvinghealthandlives.org.uk/
5.6 Department of Health (2013). Six Lives: Progress report on healthcare
for people with learning disabilities. DH: London.
5.7 Improving Health and Lives Learning Disabilities Observatory (2013).
Final Report to the Department of Health. IHaL: North East Public
5.8 Clinical Champion Learning Disabilities, Royal College of General
5.9 Deputy Director, Disability, learning and autism policy, Department