Harry Potter author JK Rowling has spoken of the pain of losing her mother to multiple sclerosis (MS) and her anger at what she sees is a lack of care for sufferers in Scotland.
JK Rowling says more could be done
The creator of Harry Potter tells how when she heard of her mother's death on New Year's Eve 1990, it was "the worst New Year ever, the worst day of my life so far".
Writing in The Sunday Herald, the patron of the MS Society Scotland said the
pain of her mother's death was added to by what she claimed was the NHS's
failure to provide care.
She writes: "I was very angry indeed: angry that my mother had died so young,
angry at the illness that killed her, but also angry at the care, or lack of it,
that she had received."
Thirteen years later Ms Rowling claims nothing has improved.
The author continued: "No fewer than 13 New Years have passed, surely there
has been great improvements in the care of people with MS since then?
Unfortunately and infuriatingly - the answer appears to be 'no'."
MS, an incurable disease of the central nervous system which impairs muscle
control and usually worsens over time, affects 85,000 people in the UK - while
Scotland has the highest prevalence of MS in the world.
According to recent research, Scots are the most likely to feel a "postcode
lottery" determines the quality of care people with MS receive.
Social research institute Mori polled 3,000 people across Britain in 2003 and
found more than three-quarters of Scottish respondents believe their quality of
care depends on where they live.
In her article, Ms Rowling said her mother was left to "muddle on alone"
with inadequate information and care.
The author writes: "It is simply inhumane to neglect people because they have
an inconvenient illness that won't go away.
"Scotland ought to be leading the world in this area, not falling lamentably
"People's lives are being blighted, not only by this cruelly unpredictable
disease but also by the inadequacy of their care."
MS Society Scotland is calling on the Scottish Parliament to ensure NHS
Quality Improvement Scotland, which sets standards throughout the NHS, starts working on a basic standard of care for people with MS.
According to Ms Rowling, six out of 15 Scottish health boards still have no
specialist nurse provision for MS, but a national standard of care would ensure "no matter where you live health care professionals are aware of your basic needs and requirements and have the time and resources to meet them".
She added: "Would a national standard of care have made much difference to my mother?
"I am convinced that it would have done. Visits from a specialist nurse,
proper support from social services, physiotherapy when appropriate: all would have improved her quality of life dramatically."
A Scottish Executive spokesman said: "The executive takes MS very seriously as was shown by Malcolm Chisholm's personal commitment to ensuring Scotland's full involvement in the UK-wide risk-sharing scheme for improving access to disease-modifying drugs such as beta interferon.
"We are currently negotiating with NHS health boards over funding of new
neurologists posts to try and address the shortage of neurologists and reduce
the waiting times to see these consultants.
"The Executive has also funded the development of a pilot MS managed-care
network in Forth Valley with the help of the MS Society.
"We acknowledge the important role of specialist nurses but that role must be
integrated with other services and is best developed by the NHS."