BACK in October 2000, scores of campaigners descended on Holyrood to protest at the postcode lottery in the care and treatment of people with multiple sclerosis.
They were angry that, while Scotland was well known as having one of the highest rates of MS in the world, services for people living with the disease were often sadly inadequate. It was noted by the then MS Society Scotland's director Mark Hazelwood that people in Turkey had a better chance of receiving key MS drugs than people in Scotland.
Nearly 13 years later, the Society's latest report reveals the depressing truth that a postcode lottery still remains. An individual's location within Scotland has a significant impact on the likelihood of their taking drugs for their MS. Overall, little more than one-third of people who could benefit from taking key MS drugs are actually taking them – almost half the proportion in Northern Ireland and fewer than in England. Comparing other European countries, only patients in Poland and Romania fare worse. As if that weren't alarming enough, Scots also describe having more trouble than people in England and Northern Ireland getting to see a neurologist when they needed to.
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This report is based on more than 10,000 survey reponses from across the UK, including 870 from Scotland. Given those high numbers, even taking into account that those with negative experiences to report may be more likely to respond, the findings are deeply worrying. Some 10,500 people in Scotland live with MS; that being so, the NHS in Scotland should lead the way on providing care, not only in the UK but the world. Instead, the care and treatment of people with MS in Scotland appears to be falling well short of what patients and their families have a right to expect.
In the background to these specific problems is the underlying financial malaise affecting the NHS. The Scottish Government insists that it has the matter in hand and improvements are in train, talking of MS as a priority and saying that implementation of new neurological clinical standards "will ensure people with MS get the earliest and most appropriate neurological treatment locally, but with access to specialist services when needed". Perhaps, but Scots living with MS will no doubt reserve judgment until they see real improvements in their own personal experience of MS care; after all, successive governments have been describing MS care as a priority for more than a decade and still these unacceptable inadequacies in care remain. The Scottish Government must ensure that all Scots who would benefit from drug treatment receive it, and that variations in access to life-transforming treatments in different health board areas, are removed.
Medical science has yet to identify either the cause or a cure for this difficult disease, but managing its symptoms well can make a dramatic difference to an individual's quality of life. It is not good enough to expect Scots with MS to make do with inadequate care.