Thousands of people with multiple sclerosis are not getting drugs or the care and support they need, according to a campaign launched today by a support charity.
Six out of 10 people with MS are not receiving what are called “disease-modifying treatments”, which are not cures but may reduce the frequency and intensity of attacks and slow progression of disability.
The MS Society is launching a campaign for better care and support of the estimated 100,000 people who have the neurological condition, which is usually diagnosed between the ages of 20 and 40.
It is caused by damage to the myelin sheath, which surrounds the nerve fibres. There are many symptoms, including vision and balance problems, spasms and stiffness. There is no cure and the condition often gets progressively worse.
The MS Society wants equal access for all to treatment, although the drugs available do not help everyone. A survey of more than 10,000 people with the condition found there were postcode variations, with people in Northern Ireland twice as likely as those in Wales to be taking drug therapy.
Of those who were well-informed, saying they had sufficient information on treatments, 59% were taking disease-modifying treatments, compared with 27% of those who felt they did not know enough about them. People who had access to a specialist MS neurologist or nurse were more likely to be on treatments.
In Europe, only Poland and Romania have a lower prescription rate for MS drugs, says the society.
“These findings worryingly suggest that the likelihood of someone receiving a life-changing treatment is often based on luck – like where they live or how helpful their healthcare professional is – rather than their genuine clinical need,” said Nick Rijke, director of policy and research.
“When it comes to prescription rates, the UK ranks 25th out of 27 European countries. Given the relative wealth of the UK, this is simply unacceptable. People with MS are facing a lottery when it comes to accessing the care and support they need to manage their condition and this must change.”
The report also found that half of those who are struggling to make ends meet and need social care support are unable to access it.
