http://www.scotlandonsunday.com/week.cfm?id=SS01022233&feed=N
17 June 2001
It started with somebody familiar
to us all. A nationwide surge of interest arose when JK Rowling, the author
of the Harry Potter books, lifted the usually strict veil on her private
life to talk about the death from multiple sclerosis of her mother Anne.
In a stark and moving account, Rowling
vented her bitterness at the appalling quality of care afforded to people
with MS in Scotland - even though the disease strikes more people here
than anywhere else in the world.
As attention moved on, however, Scotland
on Sunday embarked on a campaign which recognised at its core that MS is
not a disease which affects only the famous or popular. Over eight weeks,
this newspaper examined the plight of people with MS across the country,
highlighting the deficiencies in NHS care, drug availability, medical attention,
clinical research, practical support and basic standards.
We told the human stories of those
people denied treatments which could slow the disease’s progression, kept
in fear because of waiting times for diagnosis, experiencing unnecessary
misery through a lack of specialist nurses.
During that awareness campaign, many
people with MS contacted the paper to lend their support: from their messages,
it is clear that the campaign has succeeded at least in bringing to light
the third-world care standards for people with MS in Scotland.
There has also been the first stirrings
of a response from MSPs and the Scottish Executive, which has the power
and the mandate to improve the NHS in Scotland. The Health Committee of
the Scottish Parliament has recommended that the issue of MS specialist
nurses should be made a priority. Currently there are only five full time
and one part time specialist nurses in the whole of Scotland, while it
is estimated that there should be at least 22 to ensure a basic standard
of care for all.
As a direct result of our campaign,
health minister Susan Deacon has backed our call for more specialist nurses,
called for consultants to hand out specialist literature when the condition
is diagnosed and has indicated her support for campaigners’ proposals to
create a national standard for care provision.
Yet during that same period, campaigners
point out that for the 10,400 people in Scotland with MS, almost nothing
has changed: indeed for many it has got worse.
The MS Society Scotland, which has
supported our campaign, estimates that up to 100 Scots have been diagnosed
with the disease during its course. However, given the low standards of
treatment on the Scottish NHS, probably only 10 of those live in health
board areas in which they are likely to have been seen by an MS specialist
nurse.
Between 12 and 20 of the newly-diagnosed
would benefit by being prescribed Beta interferon, a drug which can slow
the progression of the disease in around 20% of people with MS. However
the most optimistic estimates suggest that as few as five of these will
have actually received the drug. Such is the haphazard nature of drug delivery
in this country that it is quite possible that none of the new patients
will have benefited from the treatment.
Yet the denial of Beta interferon
does not just exacerbate symptoms. Because MS is a progressive disease,
the drug cannot help once symptoms have worsened beyond a certain point:
and in the two months since our campaign began, up to 15 Scottish people
with MS will have seen their conditions worsen to the point that Beta interferon
will no longer be of any use.
"These patients have been condemned
to an irreparable decline in their health, at huge cost to the quality
of their lives and the lives of their families and at a minimum total cost
to society of nearly £20,000 per patient," the MS Society said.
But there are still more examples
of the appalling standards of Scottish MS care. Over the last 8 weeks,
500 people will have been agonising over the alarming possibility that
they may have the illness - but are unsure because an acute shortage of
neurologists has led to lengthy waiting times for diagnosis.
And in those eight weeks, a number
will have died. It is impossible to say just how many: MS eventually weakens
the body, meaning people succumb to illnesses such as pneumonia, so their
deaths are often not recorded as being due to MS.
The issue is not simply one of disease
and treatment, however: MS campaigners acknowledge that there are enormous
demands on the NHS and only a finite budget. What drives their anger, and
the public response to our campaign, has been the extraordinary fact that
treatment is so poor even though Scotland has more cases per head of population
than anywhere else in the world.
This is a vicious irony recognised
by MS experts in countries where those in need of the most up-to-date treatments
can expect to receive them. Peter Kauffeldt of the Danish MS Society said
he hoped that if he ever contracted MS, he would not have to be treated
in Scotland.
"If I had multiple sclerosis I would
rather live in Germany or Denmark than in Scotland," he said. "I hope that
the MS population in your country will one day be able to benefit from
the same understanding of the authorities here."
Our campaign has uncovered a culture
of patient neglect both within the NHS and in the community.
Campaigners describe care on the
NHS as a "scandal". The MS Society is demanding that the Scottish Executive
should implement a national MS strategy as recommended by a Scottish Needs
Assessment Programme (SNAP) report last year.
There is also frustration that the
Scottish Intercollegiate Guidelines Network (SIGN) have drawn up guidelines
for treating impacted wisdom teeth but have not yet dealt with MS.
There is also increasing concern
that Scottish patients are falling behind those south of the Border. In
England the National Institute for Clinical Excellence (NICE) has started
to develop national MS guidelines when there is no equivalent happening
in Scotland.
Mark Hazelwood, the director of the
MS Society in Scotland, said: "There is a need for a definition of a national
standard of service. There is a huge variation in the services and standards.
How can you possibly aim to have consistency if the Executive is not taking
the lead and setting a national standard?"
More than anything, however, the
Scotland on Sunday campaign has highlighted that MS is not just a word
or a medical condition: it is the story of people. Many have contacted
us to express their support or gratitude; many others simply hope that
a country which is amongst the most prosperous in the world and which for
generations has led the field of medical science can turn its attention
to their plight.
The final word, however, will be
for Rowling, whose courage in opening up her life to public scrutiny has
given impetus to our campaign and hope to thousands.
"I am very hopeful that the excellent
and groundbreaking Scotland on Sunday campaign will have raised public
awareness of what is unfortunately a particularly Scottish disease," she
said this weekend. "The Multiple Sclerosis Society Scotland continues to
battle for the desperately needed improvements in care and research identified
in the articles in the last few weeks. Any contribution to their work -
whether writing to your MSP asking what is being done for people with MS
in your area, or making a donation to the society - will make a real difference.
People with MS in Scotland should be able to expect a decent and consistent
minimum standard of care wherever they live."
• Further information is available
from the MS Society Scotland on 0131 472 4103, e-mail admin@mssocietyscotland.org.uk.
The society’s helpline is 0808-800 8000.
Readers' reactions
‘Thank you so much for the series
of articles in Scotland On Sunday. I am one of the ones trapped in unsuitable
housing, my flat was meant to be disabled-adapted, but I cannot get in
and out the house on my own. ’
Margaret McDonald
‘Have read your articles about MS
with interest. Keep up the good work with the campaign. ’
Dr Gillian Penrice, specialist
registrar in public health medicine, Glasgow
‘I read your article on Sunday. It
is good to know that the media are behind us in fighting for recognition
by the Ministry and the NHS. ’
Anne Young
‘I was pleased to read your article
yesterday about the Scotland on Sunday campaign for improved resources
for MS sufferers and I write to offer my support. I fully endorse your
paper’s campaign. ’
Dr Dorothy L Taylor, Fife
‘I am writing to thank you for your
support for multiple sclerosis sufferers. Like J K Rowling we had to watch
a member of our family - our dear daughter - deteriorate into a pale shadow
of the girl we had known and loved. Last year she died of pneumonia, five
days short of her 34th birthday. Please continue your good work. ’
Mrs Frances Anglim, Bellshill
‘As someone who suffers from MS I
welcome your campaign. I have been disappointed with the response from
the Scottish Executive.’
Shona Selkirk, Kirkcaldy
By Tom Peterkin