Up to 45,000 patients with advanced MS are not getting the support they need from specialist health services, a national charity has warned.

According to the MS Trust, transformative drugs which have become available for primary and secondary progressive MS, offer these patients a better quality of life, but have drained NHS resources, leaving specialist MS centres underfunded.

There are currently around 107,000 people living with MS in the UK, but only 20,000 of those qualify for these new drugs.

“It seems to be a huge weight of people here who are being forgotten,” David Martin, CEO of the MS Trust tells NR Times.

“It’s something that we’re trying to get the NHS sector to address a little bit more. We think the drugs are fantastic, it’s making a real difference, but it’s only 20,000 of the 107,000 people, and it’s all those other people that we think there’s got to be a focus on.”

The drugs, which mostly benefit younger people in the early stages of their ‘MS journey’ can relieve symptoms and postpone the need for the use of a wheelchair or walking stick.

However, Martin continues: “For about a fifth of the people it’s really good news, the challenge is, there’s many people who the drugs are not appropriate for, and they are looking for support from the health services. Almost all of the resources from the NHS at the moment are being sucked into those early stages – giving people the drugs, doing the monitoring and supporting those people – which is great, but it means that many people are being overlooked.

“You’ve got a lot of people who are not getting a huge amount of support from the specialist services in the NHS – they’ve almost been lost to the NHS system.”

The MS Trust reports an increase in GP appointments, A&E visits and unplanned hospital admissions, as a result of specialist MS services not getting the funding they need.

Martin adds: “For those people in the latter stages of the MS journey, they’re not really getting that much in the way of support from specialist MS centres.

“They’re getting a bit of support from GPs but what that means is they’re having to go to GPs or A&E if they’ve got a problem with their urinary tracts or they’ve got a fracture.”

Last year the MS Trust launched its Advanced MS Champions Programme, which aims to provide a package of support for those with advanced MS, including funding 90 per cent of the cost of a specialist health professional within the MS team, whose focus is to care for those individuals.

There are currently six pilots of the scheme being rolled out across the UK.

Martin added: “What we’re trying to do is focus on those 45,000 people who are getting next to no support, to see if we can be a navigator, to join up the support that does exist at the moment, and bring some of those people with advanced MS back into the MS system.”

NR Times has approached NHS England for comment.