More MS news articles for April 2001

Rowling condemns MS Ďbetrayalí

http://www.scotlandonsunday.com/news.cfm?id=SS01013857&feed=N

22 April 2001

JK ROWLING, the hugely successful author of the Harry Potter series of childrenís books, has launched a scathing attack on the governmentís failure to care properly for sufferers of multiple sclerosis, the disease which killed her mother.

In a poignant and heartfelt tribute to her mother Anne, who died at the age of 45, Rowling says she simply cannot understand why Scotlandís 10,000 MS victims receive such an "appallingly poor quality of care" even though the disease is more prevalent here than anywhere else in the world.

Writing exclusively for Scotland on Sunday, the author questions why, given that MS is more likely to strike a Scot than a person of any other nationality, so little is being done to help its victims.

"We live in the MS capital of the world. Surely then, our government would want to set world standards in research and care?" she asks. "The truth about the appallingly poor quality of care sufferers receive only became clear to me after I had contacted the Multiple Sclerosis Society Scotland."

Rowling supports her savage attack on the governmentís failure to tackle MS by pointing out that despite the diseaseís prevalence here, no research into its causes or treatments is funded by the Scottish parliament.

She adds that patients still fail to have their needs assessed regularly and that there are only eight specialist MS nurses in the whole country.

"Standards of care could be significantly improved overnight, at a very small cost, by doubling the number of MS nurses," she writes.

The author also points out that provision of the drug Beta interferon, which alleviates the symptoms of up to one-fifth of MS sufferers, is more readily available across most of Europe than in Scotland, where only 2.4% of victims are allowed to benefit from the treatment.

"Youíve got a better chance of being prescribed it in Turkey," she says. "It would cost £7m a year to give Beta interferon to every MS sufferer in Scotland who would clinically benefit. Thatís 0.1% of what the Scottish health service will spend this year!"

Rowling says she is at a loss to explain the failure of ministers to help alleviate the suffering of victims of MS, a disease of the central nervous system which impairs the brainís ability to transmit instructions to the muscles.

"Support for MS sufferers is as woefully inadequate today as it was 10 years ago," she writes. "My mother would have found that difficult to understand, and so do I."

The attack by Rowling, whose Harry Potter series has made her one of the worldís highest-paid and most famous authors, will prove a serious embarrassment to ministers in the UK government and at Holyrood.

It will prove particularly sensitive for Labour figures who have attempted to secure financial backing or even a public endorsement for the party - something Rowling has steadfastly refused to give. The only other organisation she has publicly supported is the National Council for One Parent Families.

Rowling, whose article marks the beginning of National MS Awareness Week, also reveals that, although the medical profession has known for years that regular physiotherapy is of enormous benefit to MS sufferers, her own mother received such treatment less than 10 times in 10 years.

Admitting that she writes with "a note of bitterness", Rowling says of her mother: "She lived in the country and couldnít drive. For a very brief period a physiotherapist came to visit her, but that somehow fell through, and the physiotherapist stopped coming. The same thing happened with the home help who was sent once she had given up work. There never seemed to be quite enough money to provide services for MS sufferers."

Alongside her stinging attack on the government, Rowling has also breached her usually strict wall of personal privacy to describe the emotional devastation wrought on her and her family by her motherís illness and untimely death.

She describes the painful deterioration of a young mother-of-two who swam, played badminton and gardened into someone who - in part due to the lack of care available - needed a wheelchair outside the house, and inside "was reduced to crawling upstairs instead of walking".

The author also admits that she herself never fully appreciated the seriousness of Anneís condition, even when she last saw her at Christmas 1990. "I donít know how I didnít realise how ill she was," Rowling writes, "except that I had watched her deteriorate for so long that, at the time, it didnít seem so dramatic. I said goodbye and left to spend Christmas with my then boyfriendís parents, the first time I had spent it away from her.

"She died on New Yearís Eve. When the telephone rang at half past seven in the morning and my boyfriendís mother called up the stairs, ĎItís your Dadí, I knew. Fathers donít call their daughters that early except for the worst of reasons. She was 45 and I still canít write about her without crying."