Select Committee on Science and Technology Written Evidence

Memorandum by the Thomas Pocklington Trust


  Thomas Pocklington Trust is the leading specialist provider of housing and care for people with sight loss in the 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:

    —  Lighting.

    —  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.


  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


  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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