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MS Trust expands two support programmes

The specialist MS nurse and advanced MS champion programmes are enabling more patients to access much-needed support



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.”


Could childhood trauma lead to MS in women?

The links were strongest with sexual abuse and for those who experienced several forms of abuse



Childhood trauma may be linked to a heightened risk of multiple sclerosis (MS) in later life among women, new research has found. 

The associations were strongest for sexual abuse and for experience of several forms of abuse, the findings show.

The evidence suggests that childhood trauma can alter the immune system and may increase the risk of autoimmune disease. 

Abuse, neglect, and a chaotic home life are also associated with a heightened risk of poor mental and physical health in adulthood. 

In this study, researchers drew on participants in the nationally-representative Norwegian mother, father and child cohort study.

Nearly 78,000 pregnant women joined the study between 1999 and 2008, and their health was monitored until the end of 2018.

Information on childhood abuse before the age of 18 was gathered through questionnaire responses, while confirmation of MS diagnoses was obtained from linked national health registry data and hospital records.

In all, 14,477 women said they had experienced childhood abuse while 63,520 said they hadn’t. 

The women with a history of abuse were more likely to be current or former smokers – a known risk factor for MS – to be overweight, and to have depressive symptoms.

Some 300 women were diagnosed with MS during the monitoring period, nearly 1 in 4 of whom said they had been abused as children compared with around 1 in 5 of those who didn’t develop MS. 

After accounting for potentially influential factors, including smoking, obesity, educational attainment, and household income, the team concluded that women who had been abused as children were more likely to be diagnosed with MS.

The observed association was strongest for sexual abuse (65 per cent heightened risk), followed by emotional abuse (40 per cent heightened risk), and physical abuse (31 per cent heightened risk).

The risk was further increased for exposure to two categories of abuse (66 per cent heightened risk), rising to 93 per cent for exposure to all three categories, indicating a ‘dose-response’ association, suggest the researchers.

Similar results were obtained after the researchers excluded women who might have been in the early (prodromal) phase of MS when obvious symptoms had yet to appear.

And the association also persisted when women who had already been diagnosed with MS at the start of the study were included.

“Better understanding of the risk factors and timing of risk exposures, may open doors for prevention and give further insight to disease mechanisms,” the researchers conclude.

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Pandemic ‘raised depression and anxiety’ for people with MS

Loneliness was also a key factor affecting mental health of people with MS during lockdown, research shows



Depression, anxiety and loneliness all increased significantly during the COVID-19 pandemic among people living with multiple sclerosis (MS), a new study has revealed. 

MS researchers at Kessler Foundation compared pre-pandemic and pandemic data on emotional distress in 142 individuals with MS. 

The study revealed 54 per cent reporting ‘new’ depression, and 33 per cent ‘new’ anxiety. 

Increases in loneliness affected all people with depression and anxiety, whether symptoms were new or pre-existing.

The findings raise new concerns for treating mental health issues among people with MS, the research team said, adding to the already-known impact of social restrictions of the COVID-19 pandemic among the general population. 

Dr Lauren Strober

“We found that ‘new’ depression and anxiety appeared to be related specifically to the pandemic,” reported lead author Dr Lauren Strober, senior research scientist in the Center for Neuropsychology and Neuroscience at Kessler Foundation. 

“Also, we saw no association with the person-specific factors commonly associated with depression and anxiety in individuals with MS, namely, personality and self-efficacy.”

The MS research comes shortly after the “catastrophic” impact of lockdown on people living with Parkinson’s was revealed, with exacerbation of symptoms being a common occurrence. 

The findings of this study have important implications for the treatment of mental health issues in MS, the Kessler Foundation team said. 

The restrictions of the pandemic have been shown to lead to greater levels of loneliness in vulnerable communities, and must be addressed, said the team. 

“Clinicians need to be aware of the heterogenous nature of depression and anxiety in their patients with MS, and approach treatment accordingly,” said Dr Strober. 

“Individuals with new symptomatology will benefit from cognitive behavioral interventions that stress coping, positive mental health habits, and encouragement to connect with others despite the pandemic, while individuals with pre-existing symptoms may respond to those aimed at improving self-efficacy and other more fundamental factors of emotional distress.”

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App for MS patients tested at UK university

Roche is testing its Floodlight MS app in the University of Essex Brain Research and Imaging Centre



A global pharmaceutical company is working with a UK university to test a new app to help people with multiple sclerosis (MS) better manage their symptoms. 

Roche has developed an app called Floodlight MS, with five activities collecting data on hand function, walking ability, and cognition – areas commonly affected in people living with MS.

Floodlight MS is a science-based smartphone app that enables people living with MS to objectively assess their physical and cognitive function in between medical appointments.

The app creates for clinicians a record of data to inform future conversations and enrich clinical decisions.

Roche has a longstanding relationship with Professor Jeremy Hobart and the MS research group at the University of Plymouth to co-design projects that help improve the quality of life for people with MS. 

Identifying a collaboration that could help move the new app forward, Professor Hobart made an introduction to the Motor Control Lab in the University’s new Brain Research and Imaging Centre (BRIC).

The lab, led by Professor in Rehabilitation, Jon Marsden, contains world-leading technology that will enable Roche to test and validate the app’s accuracy, while continually feeding the results into product development.

The work will see participants use Floodlight MS on provided mobile phones, with researchers independently exploring if the measures recorded by the device are comparable to the measures of movement quality recorded in the lab itself, therefore ensuring that the app is working as intended.

Licinio Craveiro, principal global medical director for Roche, said: “Roche’s mission is to ‘do now what patients need next’, so we’re looking to design, build and test solutions to help people overcome some of the world’s biggest health challenges.

“To do this, we need state-of-the-art technology and science at our fingertips, so we were delighted to be introduced to Professor Marsden and his team at the Brain Research and Imaging Centre. 

“We’re really looking forward to testing and moving Floodlight MS forward to help people with MS to manage their condition.”

Professor Marsden said: “BRIC contains world-leading technology to understand human movement, behaviour and neurological conditions, and the Motor Control Lab is all about understanding how we control movement and functional ability and how it is affected by pathology.

“We were pleased to collaborate with Roche on an innovative project to validate the Floodlight MS app and, as with everything we do in research, we look forward to seeing the product help people who need it most.”

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