Multiple sclerosis patients denied vital drug due to shortage of brain specialists, NHS data shows

Patients with multiple sclerosis (MS) are missing out on vital drugs that can put the disease on pause, because there is a nationwide shortage of specialists able to prescribe them.

Nine in ten of those with the incurable neurological disease can’t access a drug that can halt progression by up to four years, according to NHS data seen by the MS Society.

Just a third can get the only other medicine that benefits this group of patients, who are in the later stages of the disabling illness.

The problem is that Britain doesn’t have enough neurologists – the doctors who are qualified to offer these treatments.

Studies show Britain has three times fewer neurologists than neighbouring European countries, including Germany and France.

‘Although these patients may have had the condition for several years, many won’t be under the care of a specialist,’ says Dr Waqar Rashid, a consultant neurologist at St George’s Hospital, London.

‘Until recently, there was nothing that could be done to slow the disease at this stage, so they were supported by their GP, most of whom don’t know the drugs exist.

‘Even if patients are referred to a neurologist, they wait for months for an appointment.’

Roughly half of those needing to see a neurologist have been waiting 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-based pharmacists to prescribe them. ‘We’d like policy changes to enable NHS trusts to share patients, to make sure everyone has access to the same resources,’ he adds.

He adds that a funds postcode lottery compounds the problem.

‘NHS chiefs have given the drug the go-ahead but haven’t granted extra funds for the costs that go with prescribing, such as blood tests, clinic time and extra nurses for monitoring,’ says Dr Rashid.

‘Some trusts have decided that they are already over capacity and don’t have the resources to spare.’

About 130,000 people in Britain suffer from MS, where the immune system attacks the protective sheath that covers nerve fibres, interfering with signals sent between the brain and the rest of the body.

This leads to a range of symptoms, including blurred vision, muscle stiffness, spasms and problems with balance.

Eventually, many sufferers lose the ability to walk.

Some 85 per cent of patients are first diagnosed with relapsing and remitting MS – which means symptoms appear, then disappear or ease for a period of time. In about half of cases, the condition gradually worsens after every relapse, at which point it is referred to as secondary progressive MS.

A small number suffer rapid deterioration of symptoms soon after diagnosis, known as primary progressive MS.

Those with relapsing and remitting MS have long had a range of treatment options, including steroids and medicines that reduce the frequency of relapses.

But until recently there were no available medicines to slow advanced disease. In 2019, the drug ocrelizumab was approved by UK health chiefs for people with early-stage primary progressive disease, following trial results showing it slowed decline in three-quarters of patients.

The next year, a daily pill called siponimod was sanctioned for secondary progressive MS. Studies show siponimod can halve the frequency of relapses and reduce symptoms by a fifth.

‘Siponimod usually delays the time it takes for patients to need a wheelchair by roughly four years,’ says Dr Rashid. But there is a small window of time in which the drug is effective. He adds: ‘The medicines don’t work so well in people who are severely immobile, so it’s important patients get access as quickly as possible before they have declined to a point when it’s too late.’

Sarah Johnson, 56, who suffers secondary-progressive MS, would be taking siponimod if she lived 50 miles east of her Dorset home. ‘I know of people in Southampton on it, but I’ve been told I can’t get it here,’ says the former nursery teacher.

‘Although these patients may have had the condition for several years, many won’t be under the care of a specialist,’ says Dr Waqar Rashid, a consultant neurologist at St George’s Hospital (pictured), London

Mother-of-one Sarah, who was diagnosed at 33, has long struggled to see a specialist neurologist.

‘I’ve always been under the care of a GP or MS nurses,’ she says. ‘The nurses would ask questions about symptoms once a year and that was it.’

Until late 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 keep fit.

Then she began suffering double vision, followed by spasms in her legs which left her struggling to walk.

‘I had to push to see a consultant. I was told there were long waits and there was little point,’ says Sarah.

‘But then I saw an eye doctor about my double vision and he referred me to a neurologist.’

Within a few months, Sarah saw the neurologist.

‘I was told siponimod wasn’t available in my area,’ says Sarah. ‘The neurologist tried to get some from Southampton but couldn’t.

‘You would have thought that the more disabled you get, the closer an eye they keep on you. But that doesn’t seem to be the case.’