Memorandum by the Thomas Pocklington Trust
INTRODUCTION
Thomas Pocklington Trust is the leading specialist
provider of housing and care for people with sight loss in the
UK: www.pocklington-trust.org.uk. Pocklington also funds a research
programme on the prevention, alleviation and cure of visual impairment,
at present amounting to about £700,000 over three years.
Formerly this programme was directed to basic medical research
but, after an extensive policy review five years ago, is now focussed
on social and public health research.
This submission of evidence to the Select Committee
enquiry on scientific aspects of ageing is based on our experience
in commissioning research in the visual impairment sector.
The Biological Processes of Ageing
Sight loss is very significant in later life:
Around one in eight of people over 75 and one in three of people
over 90 in the UK have serious sight loss, according to the most
recent peer-reviewed study1, funded by Pocklington. Much of this
loss arises from correctable impairment eg refractive error2.
A short literature search3 commissioned by Pocklington
from Kings College London in 1999 challenged the view that sight
loss was an automatic consequence of ageing and pointed to the
need for further research on prevention and cure of sight loss.
At this stage there was a singular lack of reliable
social research on sight loss, as identified by other studies
for the same policy review3. For example there were no studies
in the DOH policy programme, and only one significant study in
recent years on the JRF research programme.
However some progress has been made since. The
needs of older people with sight loss has been the subject of
a major study by UCL4. This has identified extensive need: sudden
or worsening sight loss in later life was commonly reported by
our interviewees to be a "devastating", "shattering",
or "life- changing" event. The researchers also found
that there can be a stoic acceptance that the social world necessarily
contracts. People also felt that their social or basic human skills
were diminishing: "I feel I want to scream just for human
conversation".
Recent published research, funded by Pocklington
with the London School of Hygiene and Tropical Medicine1, has
identified significant gender differences—older women are
more likely than men to suffer sight loss, after adjusting for
age differences.
The needs of people from ethnic minorities with
sight loss have barely been studied in a rigorous way, as shown
by another study commissioned for our policy review5: there have
been a few studies since but none published in peer review journals,
to our knowledge. Epidemiological links have been made between
certain diseases involving sight loss eg diabetic retinopathy,
macular disease, glaucoma, but much more research is needed. We,
and the Housing Corporation, are at present funding a project
by De Montfort University in Birmingham investigating how to improve
access of ethnic minority people with sight loss to services,
by building capacity in community groups.
There is no general cure for macular disease,
which is the major eye condition in old age. The need for further
medical research towards a cure is paramount. There is also a
need for more work on prevention. There are promising emerging
findings on links between dietary fats and macular disease and
we are funding a study at the London School to take this evidence
further, but more research is needed, and on other aspects of
lifestyle and on possible risks with a variety of drug treatments.
Generally on biological aspects of ageing, although
there are medical research units in major hospital/university
centres, the message appears to be that funding for eye research
has diminished. A meeting is being held in the visual impairment
sector in October to discuss what can be done, initiated by the
voluntary sector, and hosted by Vision2020UK.
In September 2002 we held a joint workshop at
the London School of Hygiene and Tropical Medicine to review the
recent research on public health on people with sight loss: it
was clear that there remained much to do, eg on screening in primary
care, the role of the GP annual health check, and even the prevalence
of specific eye conditions.
There appears from our perspective to be little
coordination of research other than that led by the voluntary
sector. If there is coordination elsewhere, we have not been engaged
in that process. We are attempting to improve the way our own
research is coordinated, as the charities develop better working
partnerships.
The application of research in technology and
design to improve the quality of life of older people
This is a key priority for people with sight
loss, including older people, as technology can enable people
to live fulfilled lives on a level playing field with their sighted
contemporaries.
We have three areas of interest here:
— The role of agencies in delivering
technology including equipment to people with sight loss.
— Housing related assistive technology
including telecare.
There are clearly many technologies which could
be used to a greater extent to benefit older people. Many people
with sight loss are not registered and so do not readily access
low vision aids or other services.
Our recent research at the University at Reading6
indicates that older people are not offered advice on lighting,
even though it is clear that better lighting could improve their
quality of life and their safety eg lighting on stairs could reduce
the risk of falls, though more research is needed. This research
is now being extended. Accordingly, we have begun to demonstrate
that older people can be enabled to take part in activites they
could not do previously, merely by access to better lighting eg
play the piano, or watch TV. We are now assessing our own tenants
in order to ensure they are provided with the best possible lighting—but
what about the vast population of older people who do not have
that specialist support? We have held a consultative meeting at
the Institute of Directors in June, which brought together care
professionals, Government policy makers, academic and charities
to consider how best to progress research and development in this
area. It is not being led from the public sector. There is much
to do eg influence new building regulations, investigate the possible
harmful effect of blue light, research the lighting needs of people
with different eye conditions and pilot models of providing lighting
advice. A summary report on that meeting will be available shortly.
We have briefly looked at how people with sight
loss are accessing existing technologies, in studies on home improvement
agencies services to people with sight loss, and on housing related
assistive technology7, 8, 9. Owing to a lack of inclusive design
and the reluctance of designers and manufacturers to produce for
a specialist market, together with the isolation of many older
people with sight loss, the evidence indicates that people are
not getting access to advice or provision of techologies which
could help their lives. The disciplines who would provide such
advice ie Occupational Therapists and Rehabilitation Workers,
are not technical experts, and in the case of the latter, have
low training and status. These are national workforce issues.
We have held a seminar with the University of
Reading and the EQUAL Network last Autumn to inform practitioners
and the charitable and academic sector of these issues, and discuss
how to progress. As a result, we have initiated an email newsletter
through Vision2020UK on sight loss relevant research: this will
be further developed. The EQUAL network provided a good means
of raising these issues among a group who are not aware: generally
we have found an astonishing lack of awareness and information
among general policy makers and practitioners about the needs
of people with sight loss and remedies.
This is all matched by a lack of research expertise
amongst the academic community: very few social and public health
researchers of high reputation have studied sight loss. There
are few funders and those charities who fund such research are
liable to be hampered by requirements of the new Research Governance
Framework for social care research from the Department of Health.
We are a partner in an EQUAL4 Consortium project
on Supporting Independence: New Products, New Practices, New Communities,
about the implementation of technologies including telecare in
homes of older people, for which we are providing one field site.
It is surprising how few sources of financial support there has
been for the implementation of the technology involved. Issues
of consent and ethics are little understood. There is a cultural
gap between engineers and social researchers, and much more mutual
understanding is needed.
You ask whether the research is being used to
inform policy. This is a difficult area for a research funder
like ourselves. We try to ensure our research is published, and
with partners hold workshops. However, like other charities, we
have very limited management resources, and there are few obvious
networks through which we can readily disseminate findings, apart
from links to other sight loss charities and EQUAL Network. Neither
NCAR nor the GO programme have majored on these areas. From our
perspective, there appears to be a lack of leadership at National
level on dissemination of research into policy and practice.
SUMMARY CONCLUSIONS
Sight loss has been, perhaps by its very nature,
a relatively hidden issue in policy, research and practice. Although
some progress has been made in the last few years, there remain
huge areas where rigorous research is needed. There are issues
about how far research has been coordinated, or linked with other
research initiatives on older people. Neither has dissemination
been facilitated. This appears to point to a lack of leadership
in the UK on this topic.
Dr Angela McCullagh
Research Director
REFERENCES
1 J R Evans, AE Fletcher, RPL Wormald et
al. Prevalence of visual impairment in people aged 75 years
and older in Britain: results from the MRC trial of assessment
and management of older people in the community. Br J Ophthalmology
2002;86:795-800.
2 JR Evans, AE Fletcher, RPL Wormald. Causes
of visual impairment in people aged 75 years and older in Great
Britain: an add-on study to the MRC Trial of Assessment and Management
of Older People in the Community. Br J Ophthalmology. 2004;88:
365-370.
3 In: Towards a New Research Policy: compiled
by Dr Angela McCullagh, Pocklington, 2000. Available from Thomas
Pocklington Trust, London.
4 Housing and Support Needs of Older People
with Visual Impairment—experiences and challenges.
J Hanson, J Percival, R Zako and M Johnson, UCL and
Bristol University. Pocklington Occasional Paper 1. 2003.
5 Ethnic Minorities and Visual Impairment.
A Research Review. MRD Johnson and MO Scase. Mary Seacole Research
Centre, De Montfort University. Seacole Research Paper 1,2000.
6 Lighting the Homes of People with Sight
loss. G K Cook, L O'Neill, S Hill, University of Reading. Pocklington
Occasional Paper No 4, 2003.
7 The Effectiveness of Home Improvement
Agencies to People with Sight Loss. J Rosser, E Laverick, K Croucher
et al. Pocklington Occasional Paper No 5 (forthcoming),
and Good Practice Guide. Foundations, University of York and Thomas
Pocklington Trust, 2003.
8 Helping People with Sight Loss in their
Homes: Assistive Technology. K Ross, BRE. Pocklington Occasional
Paper No 3, 2003.
9 Independent Living for Visually Impaired
People. The role of information and communications technologies
in enabling new services. Report prepared for Thomas Pocklington
Trust. J Barlow and R Curry.
September 2004
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