27 May 2001
By Jason Allardyce Political Editor
SUSAN Deacon, the Scottish health minister, has accused health boards of "absolutely unacceptable" shortcomings in their treatment of multiple sclerosis patients.
In an interview responding to Scotland on Sundayís campaign to raise awareness of the disease, the minister admitted boards were failing to do enough to implement recommendations to improve care on offer.
She also censured the boards for failing even to reply to an offer from the MS Society in Scotland to co-fund improved care provision, raised in a letter to all health board chief executives six months ago.
"That frankly is absolutely unacceptable," Deacon said.
"It is important that local boards have scope to look at overall need in their own areas but, that said, I donít think there is any excuse for boards not replying to the MS Society approach, which was a supportive one. I share the disappointment of the society."
Deacon has now instructed her officials to write to health boards, giving them two weeks to make contact with the MS Society.
The minister admitted that good provision for MS patients is too patchy across the country and she called for a "step change in the way the NHS deals with patients with this condition in future".
Her commitment was warmly welcomed by the MS Society in Scotland last night.
It follows concerns that Scotland falls well short on many aspects of service provision, despite having the worldís highest rate of MS. The MS Society in Scotland says only two health board areas provide the sort of service all patients should receive.
Deacon warned that the Scottish Executive required years rather than months to deliver the kind of patient-centred health service she desires, but in the shorter term she outlined a range of measures designed to help.
She is urging health boards to make better progress in implementing the recommendations of an Executive-sponsored Scottish Needs Assessment Programme (SNAP) which highlighted several service shortcomings.
Specifically, she backed the SNAP call for extra MS specialist nurses. "MS is one of a number of conditions where there is clear evidence emerging that improvements in support could be made through more specialist nursing. MS nurses are one of the things that can make a difference to quality of life and the support that people receive."
It follows evidence that 80% of patients in Scotland reported that hospital staff failed to talk through the implications of MS when first diagnosed, with 60% getting no advice on managing day-to-day activities.
To further improve access to quality information on living with MS and the range of treatments available, Deacon said there was no reason why patients should not leave consultations with literature about the MS Society, with whom the NHS must work more closely.
"I have asked the society to come up with what they think we can do to work with them, to make a step change in the way the NHS deals with people with this condition."
The health minister said she had been touched by friends and patients in her Edinburgh constituency who had MS.
"I share the desire for us to work to raise awareness to improve services for people with MS. I donít underestimate the impact it has on them and their families and I find it as annoying as anybody to see real people falling through cracks and gaps in the system."
The service had been too slow to deal with such chronic conditions in the past and the new network of local health care co-operatives, offering more local co-ordination and community-based services, including physiotherapists, had led to "a marked improvement".
Deacon aims for national standards because "whether you stay in Stornoway or Stirling it is right that people should expect similar services of care".
But controversially, she refused to offer anything positive on making the drug beta interferon as available in Scotland as it is in the rest of Europe and North America, amid claims from some neurologists that up to 20% of patients could benefit from it.
"There is no consensus about the best way forward," she said.
Mark Hazelwood, the director of the MS Society in Scotland, said thousands of MS patients would welcome the ministerís support for radical and rapid improvements.
He added: "The MS Society is acutely aware of the intense pressures under which all health boards operate and will offer them and the minister all the support it can.
"I believe we all share an ambition: that until a cure is found, services for Scots with MS should set a benchmark for the rest of the world."