Two vital programmes to support people living with multiple sclerosis are broadening their reach in response to the increasing need from people with MS across the country, which has been exacerbated by the pandemic and the knock-on effect of a shortage of community resources and growing waiting lists. 

The specialist MS nurse and advanced MS champion programmes, operated by the MS Trust, are both growing to help meet demand for people with MS who need greater support – something which has increased significantly during the pandemic, with support being scaled back or stopped for many amidst mounting pressure on NHS resources. 

The MS nurse programme – which provides the NHS with a support package, including funding 80 per cent of the nurse’s role for the first 15 months in post – has recently moved into the Walton Centre in Liverpool to provide care across North Wales, with three more nurse roles planned across the UK this year. 

The charity is currently undertaking its biannual survey of MS services nationally, assessing the landscape of support and the changes seen since 2018.

“We have three nurses planned for this year, with a basic plan of six over the next two years, and to scale up the programme in response to the need,” says Paru Naik, director of health professionals programmes at the MS Trust. 

“In our survey, we will look at what’s happened, what services are no longer there, what the support is looking like. We’ll analyse the results and work out where there is the most unmet need and the least resource. 

“Every person with MS should have access to an MS nurse as and when they need it, and you can identify the difference between having and not having access to that support.

“There are so many issues that people with MS face and the MS nurses help them navigate the situation, helping them to find  the right resources and how to access them whilst working closely with neurologist and allied health professionals to ensure access to treatment and support.”

The advanced MS champion initiative, which delivers guidance to people with more advanced MS in navigating the health system and accessing resources, has also seen its value proven after a successful pilot in six sites across the UK. 

The work to date with  the advanced MS champions, who may be from either a nursing or therapy background, has enabled support to continue for this particularly vulnerable group of people, which is proving increasingly vital in meeting demand amidst ongoing backlogs.

“People with advanced MS can get easily lost in the system and end up going round in circles with little or no access to specialist MS care” says Paru. 

“The waiting list increases are having a huge impact and there isn’t always the access to NHS resources. There are 130 people diagnosed with MS every week in the UK, and 40,000 with advancing MS who are not on any drugs, many of whom don’t have access to the acute sector.”

While both programmes had to be paused during the pandemic due to resource issues – both within frontline healthcare and the MS Trust, where its enquiry line became a hugely effective resource during times of lockdown – the charity is now stepping up to support specialist services at a time when it has never been more needed. 

During the past 18 months, it was the MS Trust’s virtual support which proved invaluable for those who needed its support, with the increase in demand for its services necessitating rapid development of its enquiry line. The charity was able to access funding from the National Lottery Community Fund to support its scale-up, with 83p in every pound of its income coming from fundraising and no Government support being received.

“Frontline services were being re-deployed and it was very difficult for us to engage with health professionals at that time,” says Paru. 

“We recognised people with MS needed a different kind of support, so deployed our own resources to help meet demand for our enquiry line. 

“We always knew our two programmes were going to be re-started, they’re real USPs for us and we know only too well how vital they are for people with MS, but at that time it was a question of resource.

“We were suddenly inundated with enquiries, the vast majority of which were COVID-related, so we diverted our energy into how we could create a resource both we and health professionals could direct people to. 

“Our website was also a priority, and we started to add online content based around COVID, includes videos, blogs and personal stories, to help support people remotely.

“This all happened as we were moving to work from home, with around 50 per cent of our team going on furlough leave, but the transition felt seamless. We recognised the need people with MS had for our support and we’re really proud of how we met that.”

Having relied on virtual means of communication during the pandemic, the MS Trust team are now returning to the office and are resuming face to face contact but will be following a blended approach of both going forward. 

“Virtual will be right for some but not for others – for some, things will have been missed and lost, and it’s important we address that at the earliest opportunity,” says Paru. 

“Multiple sclerosis is such a varied disease, no two people have the same set of symptoms. This is why specially trained nurses and therapists are so vital to people who live with MS.”

Depression is common in people with multiple sclerosis (MS), and a new study shows that people with both conditions may be more likely to die over the next decade than people with just one or neither condition. 

The study also found that people with MS and depression have an increased risk of developing vascular disease such as heart attack and stroke.

“These findings underscore the importance of identifying depression in people with MS as well as monitoring for other risk factors for heart disease and stroke,” said study author Dr Raffaele Palladino, of Imperial College London.

“Future studies need to be conducted to look at whether treating depression in people with MS could reduce the risk of vascular disease as well as death over time.”

The study involved 12,251 people with MS and 72,572 people who did not have MS. Researchers looked at medical records to see who developed vascular disease or died over a period of 10 years. 

At the start of the study, 21 per cent of the people with MS had depression and nine per cent of the people without MS had depression.

The researchers found that people with both MS and depression had a mortality rate from any cause of 10.3 cases per 100,000 person-years. 

Person-years take into account the number of people in a study as well as the amount of time spent in the study. The mortality rate for people with MS without depression was 10.6, for people who had depression without MS it was 3.6 and for people with neither condition it was 2.5.

Once researchers adjusted for other factors that could affect the risk of death such as smoking and diabetes, they found that people with both conditions were more than five times more likely to die during the next decade than people with neither condition. 

People with MS without depression were nearly four times more likely to die than people with neither condition and people with depression without MS were nearly twice as likely to die.

For the risk of vascular disease, the rate for people with both MS and depression was 2.4 cases per 100,000 person-years; 1.2 for people with MS without depression; 1.3 for people with depression without MS; and 0.7 for people with neither condition.

After adjusting for other factors, researchers found that people with both conditions were more than three times as likely to develop vascular disease as people with neither condition.

“When we looked at the risk of death, we found that the joint effect of MS plus depression equaled more than the effect for each individual factor alone—in other words, the two conditions had a synergistic effect,” Dr Palladino said. 

“A total of 14 per cent of the effect on mortality rate could be attributed to the interaction between these two conditions.”

A limitation of the study was that researchers did not have information on risk factors such as body mass index (BMI), which could affect the risk of vascular disease and death.