Only 40% of people eligible for drugs to combat multiple sclerosis in the UK are actually taking them, says a report from the MS Society.
A survey of more than 10,000 adults with MS showed that many were missing out on the seven licensed medicines approved for use.
The charity said a lack of information and access to specialists was to blame.
It is calling for the government to provide a personalised care plan to every person with MS.
The MS Society’s survey and accompanying report showed that there were differences in access to disease-modifying treatments (DMTs) across the four nations of the UK.
These are medicines that can reduce the frequency and severity of MS attacks, and in some cases can slow the progression of the disabling condition.
Someone living in Northern Ireland with MS was twice as likely to be taking a DMT (68%) than someone with the condition in Wales (30%), for example.
Access to treatment in Scotland and England was only a little higher at 36% and 40%.
What is multiple sclerosis?
Multiple sclerosis (MS) is a neurological condition that affects around 100,000 people in the UK.
Most patients have it diagnosed between the ages of 20 and 40, but it can affect younger and older people too.
Almost three times as many women as men have MS.
In Europe, additional research shows that only Poland and Romania have a smaller proportion of people with MS taking licensed medicines.
The charity’s report said that being well informed about the medicines available was crucial.
Those who felt they had enough information about medicines were 32% more likely to be taking a DMT, the survey found, and those with access to a specialist MS nurse or neurologist were more than twice as likely to be taking the appropriate drugs.
Northern Ireland is the only place in the UK where most people with MS are routinely invited every six months to see a neurologist or MS nurse for a review.
This means that people with MS are constantly having their treatment options assessed, the report says.
As a result, they are more likely to get the information they need and discuss issues such as side-effects.
UK licensed medicines for MS
- Avonex, Betaferon, Rebif and Copaxone were all made available on the NHS in 2002 throughout the UK.
- Extavia was licensed in 2009 and reduces relapses by a third.
- Tysabri is a monthly infusion administered by a healthcare professional. It can reduce the number of relapses by an estimated 67% and slow disability. It was approved for use on the NHS across the UK in 2007.
- Gilenya, the first pill for MS, is said to reduce relapse rates by 54-60% and slows disability progression by around 30%. It was approved in 2012.
Yet this may not be the only solution. Forty-one per cent of those who said they did have enough information about drug treatments still did not take a disease-modifying treatment.
The report concluded: “This could be due to barriers to accessing medicines; because individuals make an informed decision not to take them; or because they don’t know what information is out there that they could have access to, such as around new treatments or new evidence of efficacy.”
Nick Rijke, director for policy and research at the MS Society, said people with multiple sclerosis were facing a lottery.
“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.
“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.”
The MS Society is now calling on all four governments in the UK to ensure every person with MS has a personalised treatment, care and support plan, with two comprehensive reviews each year.
Ed Holloway, head of care and services research at the MS Society, said that because some MS drugs were costly, they were often not offered when they should be because of restricted NHS budgets.
A spokesman for NHS England, which has recently taken on the commissioning of treatment for MS from primary care trusts, said a new policy from 1 April would mean that people across England would have the same access to treatment.
“By making decisions nationally about specialist treatments, we are confident that patients will now be able to receive the treatment they need, irrespective of where they live.
“As with all policies, we will continue to collect and review the outcome of treatments for patients and consider them when our policy is reviewed.
“If a patient has concerns about the treatment they are receiving we would urge them to speak to their GP or consultant.”