Patients with multiple sclerosis (MS) are missing out on essential medicines that can stop the disease because there is a shortage of specialists across the country who can prescribe them.
Nine in 10 of those with the incurable neurological disease do not have access to a drug that can halt progression for up to four years, according to NHS data from the MS Society.
Only a third can receive the only other drug that benefits this group of patients, who are in a later stage of the disabling disease.
The problem is that Britain doesn’t have enough neurologists – the doctors qualified to provide these treatments.
Studies show that Britain has three times fewer neurologists than neighboring European countries, including Germany and France.
HEAD COUNT: The UK has far fewer neurologists than Germany or France
‘While these patients may have had the condition for several years, many will not be under the care of a specialist,’ says Dr Waqar Rashid, a consultant neurologist at St George’s Hospital in London.
‘Until recently there was nothing that could be done at this stage to slow down the disease, so they were supported by their GP, most of whom don’t know the drugs exist.
‘Even when patients are referred to a neurologist, they wait months for an appointment.’
About half of those who need a neurologist have been waiting for more than four months, official data shows.
Dr. Rashid says the availability of drugs could easily be increased by allowing specialist MS nurses and hospital pharmacists to prescribe them. “We want policy changes to allow NHS trusts to share patients, to make sure everyone has access to the same resources,” he adds.
He adds that a zip code lottery exacerbates the problem.
‘NHS chiefs have given the green light to the drug but have not allocated additional money for costs associated with prescribing, such as blood tests, clinic time and extra nurses for monitoring,’ says Dr Rashid.
“Some trusts have decided they already have the capacity and don’t have the resources.”
About 130,000 people in Britain suffer from MS, in which the immune system attacks the protective sheath that covers nerve fibers, disrupting the signals between the brain and the rest of the body.
This leads to a range of symptoms, including blurred vision, muscle stiffness, spasms, and balance problems.
Eventually, many patients lose the ability to walk.
About 85 percent of patients are first diagnosed with relapsing and remitting MS, meaning that symptoms appear and then disappear or decrease over a period of time. In about half of the cases, the condition gradually worsens after each relapse, after which it is referred to as secondary progressive MS.
A small number suffer a rapid worsening of symptoms shortly after diagnosis, known as primary progressive MS.
Those with relapsing and remitting MS have long had a variety of treatment options, including steroids and medications that reduce the frequency of recurrences.
But until recently, no drugs were available to slow advanced disease. In 2019, the drug ocrelizumab was approved by UK health chiefs for people with early-stage primary progressive disease after study results showed it slowed the decline in three-quarters of patients.
The following year, a daily pill called siponimod was approved for secondary progressive MS. Studies show that siponimod can halve the frequency of recurrences and reduce symptoms by a fifth.
‘Siponimod usually delays the time it takes for patients to need a wheelchair by about four years,’ says Dr Rashid. But there is a small time frame in which the drug is effective. He adds: ‘The drugs don’t work very well in people who are severely immobile, so it’s important that patients get access as soon as possible before they’ve declined to the point where it’s too late.’
Sarah Johnson, 56, who suffers from secondary progressive MS, would use siponimod if she lived 50 miles east of her home in Dorset. “I know people in Southampton who are working on it, but I’ve been told I can’t get it here,” says the former kindergarten teacher.
‘While these patients may have had the condition for several years, many will not be under specialist care,’ says Dr Waqar Rashid, a consultant neurologist at St George’s Hospital (pictured), London.
Mother of one Sarah, who was diagnosed at age 33, has long struggled to see a specialist neurologist.
“I’ve always been treated by a GP or MS nurse,” she says. “The nurses asked about symptoms once a year and that was it.”
Until the end of 2021, Sarah’s illness had remained relatively stable: she suffered some weakness in her left leg, but managed to run five miles a week to stay fit.
Then she started to see double, followed by spasms in her legs that made it difficult for her to walk.
“I had to insist to see a counselor. I was told there were long waits and it was of little use,’ says Sarah.
“But then I went to an ophthalmologist about my double vision and they referred me to a neurologist.”
Within a few months, Sarah saw the neurologist.
“I was told siponimod was not available in my area,” says Sarah. “The neurologist tried to get some out of Southampton but couldn’t.
“You would think that the more handicapped you become, the more they keep an eye on you. But that doesn’t seem to be the case.’