Lost from view

Although one in 10 people older than 65 in the UK have severe
visual impairment, little is known about their experiences and
needs. In an attempt to redress the balance, Thomas Pocklington
Trust, a charity that provides housing and support for visually
impaired people, commissioned a survey. The findings show an
alarming service shortfall.¹

Three areas are highlighted in the study: the emotional impact of
sight loss, the need for sensitive support and the isolation and
social exclusion of this group of people.

The emotional impact of loss of sight in later life is accentuated
if it coincides, say, with the death of a spouse, loss of mobility
or the inability to read or pursue lifelong interests. These
feelings are not always acknowledged when visual impairment is
diagnosed, and several participants described how a bluntly
delivered medical prognosis had left them feeling vulnerable. Vera
Martin, for example, recalled how the hospital specialist had
simply said there was nothing medically that could be done, which
left her feeling shocked, isolated and desperate for some sort of
counselling.

The effects extend to family members. Spouses, in particular, face
complex, unwanted and sometimes frightening feelings as they too
wonder what the future holds. The study suggests that health and
social services should seek ways to offer practical and emotional
support when visual impairment is diagnosed through the provision
of information about support services, advice on the benefits of
low vision equipment and access to counselling so that immediate
worries can be aired and reassurances given.

The second theme running throughout the research is the importance
of informal and formal support. Older people with sight loss are
less able than their sighted peers to carry out activities of daily
living independently or with as much confidence, but are keen to
maintain control. So it is important that they can share tasks,
such as shopping and cooking, with the helper.

This way of operating would be more likely if the helper was a
family member, neighbour or friend, but there were examples of
professional carers, such as home helps, trying to be sensitive to
this need for partnership. It is important for the service user to
keep the same home help in order to build enough trust for the
carer to read personal correspondence aloud.

Not all those participants who could benefit from the involvement
of home helps receive this service. In particular, those living
with daughters or sons receive little or no outside support, the
expectation being that the family provides it. There are examples
of families under great strain, trying to attend to many disparate
demands.

Assessment of the needs of older people with sight loss is the
responsibility of social workers or care managers operating within
sensory impairment teams. But these teams usually work only with
individuals who have been registered blind or partially sighted,
although significant numbers of visually impaired older people are
not registered. In the study, more than a quarter were not
registered, although their needs for support were often identical
to the needs of those who had been.

Sensory impairment team members are clearly committed to their
work, and are valued by those they visit regularly. Generally,
however, workers appear to have insufficient time to visit more
than once or twice to carry out a needs assessment. This could be a
serious limitation in cases where, on the day of the visit, the
older person was not forthcoming about their support needs, perhaps
because they were feeling depressed or because, as Harry Carter
recalls, “you don’t want to feel so inadequate”.

Importantly, the research indicates that specialist workers should
take account of needs that emerge over time and should provide
proper follow-up and monitoring. A common complaint in the study
was that a worker had visited only once or twice, had been helpful
and informative but had not returned. As a result, individuals felt
abandoned, struggled to recall advice without the advantage of
written prompts, lacked up-to-date information about low vision
equipment or entitlement to financial benefits, and were desperate
for someone to contact them to ask how they were coping.

There is a case for enhancement of the remit and role of specialist
sensory impairment teams so that social workers engage with a wider
range of older people who are visually impaired and offer a
measured and holistic assessment, as well as a follow-up
service.

Limited social interaction is the third important issue. Nearly a
quarter of those surveyed never or rarely go to local shops, while
three-quarters say they would like to get out more. Interaction is
limited for those who live alone with few visitors, and many talked
touchingly of their need for greater contact and the negative
consequences of remaining isolated. One woman describes her
“longing to hear a human voice”. Another says: “I want to scream,
just for human conversation.”

For those who can get out, mutual support groups offer a chance to
share experiences and coping strategies. But availability of these
groups is patchy in the cities studied – London, Plymouth and
Birmingham – and most struggle to survive on jumble sale proceeds
or handouts from good causes. Moreover, attendance at such groups
depends on the availability of transport and escorts.

Social services departments, with voluntary sector organisations,
should help ensure the viability and further development of mutual
support groups by providing financial security, transport and
escorts. These agencies should also consider the development of a
more comprehensive befriending service, which takes account of
unmet social needs and targets social exclusion.

The research also highlights a need for better and more accessible
information. Many participants had little knowledge of supported
housing options and there was widespread ignorance about sources of
potentially useful advice and information. Specialist professionals
also lacked knowledge of important resources and developments,
indicating their need for top-up training.

The value of this study is its attention to the daily lives and
circumstances of an ignored group. Its findings deserve wide
attention and action.

– Names have been changed.

Key findings

Between March 2001 and July 2002, 400 visually impaired people
older than 55 participated in the study. They lived in various
types of housing in Plymouth, Birmingham and London. They included
individuals who were in touch with specialist services, as well as
those who were not, individuals with additional disabilities or
health problems and people from ethnic minorities.   The main
findings were: 

• Visual impairment is one of the most prevalent and disabling
  conditions in later life. 
• Care services did not recognise or help with emotional
  consequences of sight loss. 
• Specialist social work teams offered limited assessment and
  monitoring of need. 
• Social isolation and lack of human contact were prominent
  concerns.

John Percival is a senior research fellow at the
Bartlett School of Graduate Studies, University College London, and
is co-author of the report with Julienne Hanson, Malcolm Johnson
and Reem Zako.

Reference

¹
The Housing and
Support Needs of Older People with Visual Impairment,
available from Thomas Pocklington Trust, 5 Castle Row,
Horticultural Place, London W4 4JQ