More MS news articles for June 2001

Our MS campaign uncovers a culture of patient neglect

http://www.scotlandonsunday.com/week.cfm?id=SS01022233&feed=N

17 June 2001
By Tom Peterkin

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