Passport to independence?

The Department of Health’s guidance on the identification,
referral and registration of sight loss suggests that the system
will “improve the speed of referral for social care” and “improve
the accessibility and understanding of the process for
patients”.

The review of registration was in response to lobbying by user
groups and professional bodies who believe it takes too long –
often more than a year – from detecting sight loss to receiving an
assessment and rehabilitation services.

It has also long been recognised that the rate of certification and
registration among people who would be eligible is low (estimates
vary between 25 per cent and 40 per cent). Months or even years can
pass while people go through primary and secondary eye care
services before social care and rehabilitation services are
offered. During this time, vital independence and confidence can be
lost. A quicker pathway to social care is needed.

One reason this has not happened is that ophthalmologists have not
always referred people for a social care assessment at the earliest
opportunity, but have waited until medical intervention has been
exhausted.

New evidence in a report by The Royal National Institute of the
Blind shows that even people who have been certified by the
ophthalmologist and registered with local authorities as blind or
partially sighted have not received any statutory care services or
rehabilitation.

The report, Unseen, explores the quality of life of 588
blind and partially sighted people, 83 per cent of whom are already
registered. It found that only just over half had ever received a
home assessment and that the majority had not received vital pieces
of equipment that could have helped them live independently, such
as white canes, task lamps for reading and close work and talking
kitchen appliances. So in what sense is registration a passport to
better care or greater independence?

Registration is not an automatic route to services under the new
eligibility criteria for social care, known as Fasc – Fair Access
to Social Care. There is huge concern among user groups that, in
the absence of strong, central guidance, the response of many
councils to Fasc might be to put them into the lower categories of
eligibility. This is despite strong evidence of mobility problems,
difficulties in cooking, cleaning and self-care and a vastly
increased risk of falls and accidents.

Many useful and cost-effective products have been designed to help
people with sight loss undertake everyday tasks safely and prevent
premature dependence. Yet despite this, they are still not
universally offered with appropriate training by local authorities.
Unseen found that only 41 per cent of people had been
offered a white cane and only 37 per cent had been offered a liquid
level indicator which can help prevent scalding when preparing hot
drinks. Those who had been offered such items found them
useful.

This equipment gap ought to be narrowing. After an Audit Commission
report identifying the confused state of local authority equipment
provision,¹ the government issued guidance that all
health service and social services equipment stores should look to
merge by 2005. To facilitate this it added an extra £220m to
the NHS budget. The experience of local user groups indicates that
there appears to be little clinical or strategic level of
understanding within primary care trusts of the need for sensory
impairment equipment.

Community equipment was intended to be provided free from last
April. Yet charities, including the RNIB, continue to receive
requests from councils for charitable donations. If this request is
declined, it is sometimes suggested that the equipment will not be
provided, despite assessments confirming need. This situation
causes unnecessary suffering for blind and partially sighted
people.

There are many reasons for the dearth in services. Serial
under-reporting of partial sight has led to misleading registration
figures and the erroneous assumption among care service planners
that sight loss is a low-incidence disability, even though one in
12 people older than 60 will lose their sight. It has also long
been known that many blind people have other disabilities that can
jeopardise their chance of retaining independence and mask the
effect of their sight loss.

Services for people who have lost their sight are lacking and do
not reach most people who need help. Awareness of these services
among those who would benefit most from them is poor and many
people are surviving hand-to-mouth outside a system that is
supposed to support them. New streamlined signposting to social
care is to be welcomed, but is there enough capacity to deal with
unmet need?

Facts about blindness and sight loss

People who could register as blind or partially sighted – 1.1
million

People who are registered – 350, 000

Percentage who live in or on the margins of poverty – 73%*

Who live alone – 62%*

Who have daily contact with someone they trust – 36%*

Who have ever received a home assessment – 53%*

Who have ever heard of mobility training  – 30%*

Who have ever heard of social services rehabilitation – 41%*

Number of rehabilitation officers working in the UK – 600 to
800

* Source: Unseen report 

Dan Vale is the UK campaigns manager at RNIB and author of
Unseen: Neglect, Isolation and Household Poverty amongst Older
People with Sight Loss. Available from 0845 702
3153.

Reference

¹ Audit Commission, Fully Equipped, 2000. Go
to
http://www.audit-commission.gov.uk

Website

DoH guidance from
www.doh.gov.uk/sensoryimpairment

Campaign coalition

The Improving Lives coalition of 15 organisations was set up to
draw attention to the lack of resources and national standards of
care for blind and partially sighted people. 

It feels that the system of health and social care is allowing
this group of people to slip into ill-health and premature
dependency. 

Chairperson John Wood says: “Across the country there are huge
variations in the availability, quality and timeliness of care and
in the charges applied by local authorities for care services. This
has led to large disparities in the quality of life for blind and
partially sighted people from one area to the next.”  http://www.improvinglives.co.uk

A lonely life   

Gerard Oskievecz, 81, lives alone in Nottingham and has no
family. He has age-related macular degeneration and was certified
and registered blind in 1988. Two months later, a social worker
visited him but offered no practical help. On a second visit soon
afterwards, Oskievecz was introduced to Nottingham Royal Society
for the Blind. That was the extent of statutory support. No further
help or information from social services followed, no practical
products, benefits advice and no offer of mobility training or NHS
exceptions. Oskievecz was living on less than £29 a week after
he had paid all his bills and had been living on a diet of cheap
soup he prepared himself. The only help he has received in more
than 15 years has been from the local RSB branch which told him
about monocular magnifiers – and these have greatly improved his
quality of life.