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.”
