15 minutes with Professor Gavin Giovannoni

At the MS Trust's annual Conference back in November, MS Trust CEO David Martin caught up with leading neurologist Professor Gavin Giovannoni to talk about some of the challenges facing people with MS. 

I think there are a number of challenges, from diagnosis all the way through to the advanced phases of the disease. But underpinning all that is probably access to services and good quality services, which vary across the country.  So I would say the biggest issue we have is the variability in MS service provision in the UK.

I think we have to highlight the postcode lottery and then when we have the data, we use it in business cases to create policy statements and get politicians engaged. At the end of the day, politicians hate variability. They have to answer 'why isn't this part of the country as good as that part of the country?' and this creates at least the momentum for change. There's also an enormous number of people that have just fallen out of the service. So when you go across the country, you find that anything between 10 and 25% of people with MS aren't even attached to a service. I think we need to get the message out to people that they need to become politically active. They need to lobby general practitioners, they need to lobby the MS service and lobby politicians to improve the services locally.

The challenge might be getting even bigger because the prevalence of MS seems to be going up. So what can we do about that? We always underestimate the incidence and prevalence of MS and recently there was a study done in the Highlands and the Western Isles, which showed that in the last seven years the incidence and prevalence has gone up 30%. So I think there's actually an epidemic going on and we’re not doing anything about monitoring this epidemic. We know MS is potentially preventable and we really do need more research on MS prevention. We should be starting these studies sooner rather than later. Otherwise we're going to be letting down the next generation of people with MS. They shouldn't be getting this disease if we can prevent it.

A big funding push on prevention, a big funding push on improving services, and a big funding push on advanced MS, getting those people that have been forgotten back into the services. That's going to need a big investment from the NHS, but at the end of the day, most of the MS services are just running flat out. We're just fighting fires. We don't have any spare capacity, we are on the bones in terms of what we can do and that's because of all the changes in the environment. I mean there is austerity Britain, most of our NHS trusts are under special measures, there is no finance for anything else, and they are expecting us to do more with less. You speak to MS nurses and half of them are burnt out because they just can't deal with the workload. So we really have to have a fundamental change in the way we approach MS.

We've got to get rid of the dogma that if you've got more advanced disease that it is not modifiable. We've just got a drug licensed for primary progressive MS and there’s potentially a drug coming for secondary progressive disease and we think the disease is modifiable throughout its course.  We're starting two trials, one in primary and one in a more advanced secondary progressive MS, with the primary focus being upper limb function (more info at multiple-sclerosis-research.org/trials-and-studies). We think even when people are in wheelchairs, we could potentially modify their disease and slow down the worsening in terms of their upper limb function and keep them independent. So this dogma that's crept into the MS field that once you get to a wheelchair, there's nothing that can be done, it's not true.  We need to challenge this dogma, encourage people with more advanced MS to get back into their services. It’s not always about DMDs, it's about stopping them getting bladder infections, pressure sores, it's helping them with spasticity, it's improving their sleep at night. All these things improve quality of life and that's what a comprehensive holistic MS service should be providing.