December 21, 2003
The Sunday Herald
The campaign to raise standards of care for people with multiple sclerosis moved on to the European stage last week, with MEPs backing a petition demanding better recognition which was filed by a sufferer in England.
Louise McVay, who lives in Nottinghamshire, started the campaign rolling across Europe and received the backing of a Finnish MEP who used the debate in Brussels last week to highlight her own affliction with the disease.
Uma Aaltonen has written a report for fellow MEPs, arguing that Scottish health officials have drawn up some of the best guidelines for treatment and care of people with MS, though pointing out the admission that actual provision in Scotland is "substantially sub- optimal".
Her report contrasts this with Denmark, where sufferers can work 18.5 hours per week, half the working week being allowed for therapy and half a full salary being paid by the government.
It raises an EU-wide problem of inadequate employer provision and understanding, and of young people who have the disease of the nervous system being required to share nursing home accommodation with the elderly.
Catherine Stihler, the Scottish Labour MEP, is chair of the European parliament's MS group, having become involved after being petitioned by an MS group in Wishaw, and reflecting the fact that Scotland has the world's highest incidence of the disease.
"This has been the European Year of Disability, and the big issues in the case of MS are access, how people are treated, the flexibility of services," she said.
Aaltonen, a member of the Green MEP group, said last Thursday's debate was important to raise awareness of a capricious and little- understood disease, and a vital milestone for her personally.
"It allowed me to be open about the disease, and to explain that I'm not the same each day and each week," said the 63-year-old Finn.
"People sometimes think maybe I have an alcohol problem, or I'm taking drugs.
"If it has been my destiny to have it, I've somehow beaten it and taken it by the horns. I've faced it.
"I've looked it in the eye. It's very personal. And if people can see I've been open about the disease, they will ask why they are hiding it."
Her report argues for better co-ordination of services and sharing of information on research and treatments.
She told the Sunday Herald this was particularly important with new members entering the EU in May, eight of them former Soviet bloc satellites where services for disabled people and understanding of diseases such as MS are limited.
"Even in services for the deaf and blind, they tend to think it's useless and too costly to try to integrate them," she said.
Her report underlined the high incidence of MS in northern Europe, and
Scotland and Ireland in particular, with Aaltonen suggesting there may
be a genetic link to Viking forebears.
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