Outlook for MS care improves, but resource struggles hold back progress – report

Fresh optimism in the MS community fuelled by research progress, is being countered by major resource challenges in MS care, experts at the MS Society tell NR Times.

Over 130,000 people live with MS  in the UK with nearly 7,000 people being newly diagnosed each year. Globally an estimated 2.8 million have MS. 

But neurology services responsible for MS care – overstretched even before the Covid-19 pandemic – have faced continued strain in recent years as the NHS struggles to bring down soaring waiting times. Some MS patients have been waiting for over two years for vital appointments. 

While the workforce struggles to meet demand, promising developments in the research space are bringing a fresh burst of optimism to the MS community as recent discoveries pave the way for more effective treatments. 

Jacqui-Ann Hanley, head of research at the MS Society, and Philip Anderson, the institute’s head of policy and evidence, spoke to NR Times about how research and treatment methods have developed over the last several years and the challenges posed by an underfunded and shrinking workforce. 

NR Times: What exciting research projects are ongoing right now in the MS space? 

Jacqui-Ann Hanley: There is still a lot of people without treatment and the treatments we do have work on one aspect of MS; targeting the immune system. The drugs work to prevent the immune cells in the body from attacking myelin which protects the nerves. When myelin gets damaged, you begin to see symptoms of MS. We need treatments that look at repairing that myelin. 

We’re funding a small-scale trial in Cambridge that is looking at Metformin, which is a diabetes drug, in combination with clemastine, an anti-histamine. Researchers in our centre of excellence in Cambridge found that Metformin can repair myelin so now there’s a small-scale trial to see if it does the same in people with MS. The results will be coming up for that in the next couple of years. 

There’s also work happening around protecting the nerves from damage. If myelin gets damaged then the nerves can get damaged and, unfortunately, the body can’t repair damage to nerves. We want to try and find ways to make those nerves as strong as possible. The big trial happening in this area is Octopus. This is a world-first, multi-arm, multi-stage clinical trial in MS and it will be testing multiple treatments at once. 

This platform is really exciting because we’re essentially testing multiple drugs at the same time; it’s lots of clinical trials wrapped up in one. The way it’s designed means if new drugs come along, we can put those into the trial and test them, and if some of those drugs in the trial aren’t quite working, we can get rid of them. It’s really exciting that we have potential treatments coming through that are covering all aspects of MS.

The drug Ublituximab – which works to reduce the numbers of myelin-attacking B-cells – is in the latter stages of clinical trials. Could this new drug prove to be an effective addition to the MS treatment portfolio? 

Philip Anderson: The clinical trial reported last year did show that Ublituximab was better than the main competitor, teriflunomide, in terms of some indicators like new lesions. But it was pretty much the same in terms of slowing down the progression of people’s disability. 

We’re still at the stage where the relevant bodies are considering whether to license it and it would then need to go through cost-effectiveness evaluation for the NHS. 

The most exciting thing is that it is given as a one-hour infusion every six months so it will be a lot more convenient than some of the other options. It’s in line with this general trend of producing an expanding portfolio so it’s more likely that any one person with MS can find the treatment that fits with their life and works for them.

Recent studies have consolidated the link between Epstein Barr Virus (EBV) and MS. What are the latest developments in this area of research? 

Jacqui-Ann Hanley: Last year there was a great study that showed us for the first time that there is definitely a link. Now it’s a matter of what we can do with that. 

EBV is what causes glandular fever. In fact, 95 percent of people around the world have EBV in their bodies and it’s a lifelong infection. But, of course, it is not 95 percent of people that develop MS so there’s something else going on there. It is really fantastic that this study has really revitalised everyone’s interest in EBV.

There are a few trials for [EBV] vaccines now that are happening. It will be really exciting when they publish their results because then we’ll be able to really look at whether preventing EBV infection can prevent MS.

Is the momentum behind MS research translating into better treatment for patients? 

Philip Anderson: It’s such an exciting time for research, but if you look at cutting-edge research compared to what the average patient hears when they go to neurologists, we’re definitely not as caught up as we’d like to be.

If you look at the last three to five years, and especially over a longer time scale, there have been increasing disease-modifying treatments and more options for people with MS which is a cause for celebration. 

We’ve also seen more symptom management treatments that aren’t directly modifying the disease but helping reduce symptoms. For example, Sativex, a cannabis-based medicine for muscle spasticity which is now relatively widely available on the NHS. 

We’ve also seen the first couple of treatments for progressive forms of MS. Until 2018, there were only treatments for relapsing MS but progressive MS now has two treatments, which is a cause for celebration as well. However, only a small fraction of the people that the NHS thinks could benefit from those drugs are actually taking them. The pandemic has made it so hard to check eligibility and get people on to these medicines. 

There is really strong research leading to a really expanded, exciting portfolio of drugs but they are, to an extent, falling at the final hurdle of actually getting those types of patients. 

Are patients getting access to the quality of care they need given the impact of the pandemic and challenges facing the NHS right now? 

Philip Anderson: Unfortunately, neurology services are really suffering from chronic underinvestment relative to a lot of other areas, so they had a lot less resilience when the pandemic came along and therefore it’s even harder to catch up. 

Regardless of where you live, you can be sure that your healthcare professionals are trying as hard as they can but they just aren’t investing in things like MS nurses to cover wider wraparound care or they just don’t have enough neurologists.

The latest just data shows over 13,000 people with neurological conditions, of which many will have MS, have waited more than a year for neurology appointments and a lot of them have waited over two years. We did a survey in 2021, mid-pandemic, that showed almost a third of MS patients have experienced a cancelled or delayed appointment. 

The thing with MS is, you can’t just hit pause and pick it up later. All the time your disability is progressing and you’re not doing physio so your symptoms are getting worse. You can’t really come back from that often so it is really concerning to dig into that data. 

There are some areas of the country that are primary culprits, so if you’re unlucky enough to live in one of those areas, then you’re really not getting the quality of care that you need. In other areas, the picture is a little bit better but we don’t think that level of variation is anywhere near warranted. 

What is needed for the NHS to start catching up? 

Philip Anderson: We’re really desperate for the NHS workforce plan that’s apparently going to come out quite soon. Health professionals are working incredibly hard to do everything they can, but there just simply aren’t enough of them. Until that changes, it’s really hard to see this getting to where we want it to be.

We are seeing an expansion of MS nurses who are relatively senior clinical nurses focused on MS. That’s positive but even so has not kept pace with demand. Then there’s neuropsychiatry. We only have 40 neuropsychiatrists in the country and if you look at some of our data on mental health issues with MS and the need for emotional support that number is barely touching the sides of what we need. 

But a hopeful message is that a lot of MS care is relatively low level. People like administrative assistants can help with things like blood tests and release capacity for expert MS nurses to focus on the things that only they can do. Although it’s going to take quite a few years to get to where we want to be, there are things we can start doing much faster.

Are you optimistic about the future of MS care and research? 

Philip Anderson: If you look at where research is now and how much we know about MS compared to 10-15 years ago, I think it’s hugely exciting. If you look at some of the opportunities around technology and self-management, there’s a lot that people can do now that they couldn’t 10 years ago. 

But if we just limp along with the healthcare workforce we have now it’s not fair to expect the neurologist and MS nurses we’ve got to keep up with demand. I can see a future where things improve massively if we get a short-term injection of staff and more nurses and neurologists coming online in the longer term. Or, I can see things really sliding backwards, where there are areas with a really poor offer and not enough checks and balances to combat that. All roads lead back to the workforce. 

Jacqui-Ann Hanley: That big issue aside, I’m excited about the trials that are running at the moment and the new ideas and new projects around technology and self-management. In the next few years, I think we could see some really exciting treatments and benefits for people living with MS. But this is all to play for because a lot rests on the workforce and the NHS.