All About Multiple Sclerosis

More MS news articles for June 2003

The fact vacuum

Disabled population suffers due to out of date data,7843,969647,00.html

Wednesday June 4, 2003
Raekha Prasad
The Guardian

An acute shortage of information about the numbers and characteristics of disabled people is causing unsuitable and badly-planned care, according to a leading disability charity, John Grooms. It conducted a two-year inquiry into how the current and future needs of severely or multiply disabled adults should be met in the next decade.

The inquiry concluded yesterday that there was an information gap about the impact of medical and technological advances on survival, prognoses and symptoms.

Some 50 service providers, voluntary and disability organisations consulted by John Grooms expressed serious concerns about the lack of up-to-date information on the disabled population.

The inquiry report, Where Do You Think You're Going?, says that the last detailed and comprehensive study of the characteristics and distribution of disabled people was carried out 15 years ago by the forerunner of the office for national statistics. However, recent research indicates that the number of disabled people may have risen almost 30% in the past 20 years.

Housing services are the most affected by the information deficit, says the inquiry report, which draws on research showing that more than 8,000 young disabled adults are living in care homes designed for a different client group - usually dependent older people.

Jane Ackroyd, author of the report and research and development facilitator at John Grooms, says the disabled population is changing rapidly. The prevalence of some conditions, such as multiple sclerosis and strokes, is rising as life expectancy improves.

"We can now save, for example, young people who have been in road traffic accidents that we couldn't before," says Ackroyd. "And young people don't expect to live with parents, as disabled people rightly demand their right to live an independent life."

The charity is calling on the government to establish a consistent way of monitoring the numbers and needs of disabled people. It also wants a central database to help planning of services and is calling on local authorities to carry out comprehensive, individual assessments of disabled people's needs.

Copyright © Guardian Newspapers Limited 2003