George Willoughby

Data journalist


Freelance data journalist passionate about producing data-driven journalism highlighting the people behind the numbers. Recently graduated from Birmingham City University and completed an undergraduate degree from Cardiff University.

If someone is getting effective treatment several years later than they might have been, they are going to end up in a worse place with an even worse disability

How the pandemic has challenged treatment and worsened the lives of those living with multiple sclerosis

Multiple Sclerosis (MS) is a neurodegenerative condition that causes damage to the nerves in your brain and spine. Despite advancements in treatments, there is no cure. Common symptoms can be brain fog, worsening mobility and impairments to vision. Thousands of people are trying to manage their condition through a pandemic that has taken away fundamental aspects of their treatment.

Vince running

"We are now relying on ourselves to actually report anything" — the words of Vince Ashton trying to manage his MS.

Vince Ashton (pictured right) was first diagnosed with Multiple Sclerosis in November 2011. A passionate runner but after losing the use of his right leg, he was given the news that it was an MS flare-up.

More recently, Vince had to give up his nursing role because of seizures down to his condition.

He is among 130,000 people with MS in the UK. It is a lifelong condition but not a terminal illness.

The disease can have debilitating effects. To help manage disease progression, MS patients will undergo several types of rehabilitation. The Covid-19 outbreak meant that most in-person classes stopped. For Vince, a pause in the important sessions has led to his “condition worsening.”

He said: "My balance has really gone downhill, and my memory of things."

"The physiotherapy sessions that were cancelled are very important. Fortunately, I can go out walking, but swimming pools and gyms [have been] closed so we could not exercise there. And then we could not see physiotherapists.
We are now relying on ourselves to actually report anything and I get the feeling that things could very well be forgotten. I feel sorry for the people who are newly diagnosed. For people a little older, we understand that things take time.

Alongside physiotherapy, MS patients will undergo a range of fine motor skill tests. They help track simple bodily movements and muscle coordination.

Vince spoke highly of a checkup called the peg test and broadly about the importance of MS nurses putting disease changes into perspective.

He said: "They are very significant. I noticed my hand dexterity change and it would absolutely be a lot worse than it used to be."

"Telephone conversations are fine, but they are not the same as doing the peg test in front of someone while being assessed. The onus has become more on the patient knowing that there is something wrong. This worries me more than anything else. People will be missing out on important triggers.
"Something that I miss completely is not being able to have a one-to-one meeting with the MS nurse face-to-face. It is about getting into a mindset that can help you cope. That is the good thing about the appointments with MS nurses, it is the fact that a third party comes into your life. Just for that brief moment to put it all into perspective."
Vince partaking in an MS Society fundraising event
Vince raising awareness and money for Multiple Sclerosis. Picture source: Vince Ashton.

People with MS have been unable to have in-person physiotherapy sessions, unable to have routine dexterity tests and managing their conditions has become increasingly more difficult.

Throughout the pandemic, face-to-face appointments with MS nurses and neurologists have been impacted. Some specialist nurses have been redeployed to Intensive Care Units leaving behind a skeleton crew.

People have missed what would have been routine appointments and check-ups. The true extent to how much people's mobility, disability and quality of life has suffered, is not yet known.

Routine MS services have decreased during the Coronavirus outbreak

Data acquired through Freedom of Information requests for two of the main hospitals in the North-West for MS services showed decreases in a variety of treatment types.

Total neurological appointments, which includes all appointments that were face-to-face or over the phone, have decreased because of Covid-19.

During 2020, there were over 2,000 fewer neurological appointments in the Salford Royal and Walton Centre Hospitals compared to the year before.

Additionally, data for 2021 is showing how the third lockdown in England has further worsened the chances of MS patients accessing the services they need.

The Walton Centre is still below pre-pandemic levels for neurological appointments with just 40 appointments in March 2021.

Early signs for Salford Royal hospital are positive with 893 neurological appointments in March 2021 - the second-highest figure in the past four years.

However, face-to-face appointments with specialist MS nurses are another aspect to treatment that has suffered.

Nurses around the country were redeployed which meant that appointments have fallen.

The number of face-to-face appointments with MS nurses in Salford Royal have almost halved (49%) in 2020 compared to 2019.

There were also just 11 face-to-face appointments from January 2021 to March 2021.

The figures for The Walton Centre were incomplete due to anonymity concerns.

To track disease progression, MS patients should have annual MRI scans. Firstly, the scan helps with diagnosing MS. It is then used for seeing the effect of disease-modifying treatment.

The challenge with Multiple Sclerosis is that the disease can worsen without the individual showing any symptoms. Therefore, MRI scans can pick up on disease activity.

Some people will have invisible changes in their brain and spine, says Claire Winchester, who is the Head of Information and Engagement at the MS Trust.

"A lot of people have been genuinely suffering very severely. After the first lockdown, MS services did a really good job picking it up again trying to get through that backlog. This second major lockdown has been a lot worse and you are dealing with health professionals who are already exhausted."

Click play to listen to Fredi Cavander-Attwood from the MS Society talk about the treatment that has been missed, a growing backlog and how it has highlighted the need for change.

Missed scans, missed appointments, worse quality of life

Alongside scans, appointments with specialist MS nurses offer the chance for patients to voice how they are coping and share any noticeable changes in their condition.

Anne Ryder (pictured left), chair of the Bury and North West Manchester MS Group also has MS.

Portrait image of Anne Ryder

She says that these appointments provide mental reassurance and help with coming to terms with Multiple Sclerosis.

"All face-to-face appointments have been cancelled and the last time I spoke to [someone] must be over 12-months ago.

"I miss someone saying yes, that is okay. Someone understanding what you are saying. That is what I miss more than anything. I miss the reassurance."

As a result of the pandemic, appointments have been missed, referrals have reduced and there is a growing backlog.

Fredi Cavander-Attwood, Policy Manager at the MS Society, says the pandemic has exacerbated an already existing problem.

"There are huge variations in MS care services and a lot of it is unexplained. So that has always been a problem. I think Covid has probably put those MS services that were struggling before, in a worse place, further widening the gap between different parts of the country. There will be a lot of variation entrenched now because of Covid-19."

Claire Winchester from the MS Trust expressed concerns over the variation and the potential impact on what treatments are available for MS patients.

"Services all over the country are seeing variation in not only how quickly they have bounced back from the pandemic, but also in terms of what kind of service they are providing. If someone is getting effective treatment several years later than they might have been, they are going to end up in a worse place with an even worse disability."

Managing the changes in treatment and clearing the backlog

Nurses being redeployed and a general fear of the virus are widespread factors currently in the UK for MS care.

This piece has focused on just two hospitals in the North West of England. The aforementioned variation means that services across the country will be at different stages in their recovery.

Managing the effects of missed MRI scans is a challenge hospitals now face. The third lockdown in England has deepened the backlog and patients have not had their usual treatments available to them.

Karen Vernon, Multiple Sclerosis Nurse Consultant at Salford Royal Hospital, believes that the return of routine treatment will differ. She said: “This will vary from service to service. Most will try to catch up as best they can. It will also depend on how well resourced a service was pre-covid.”

But, she also highlighted that MRI scans are just one aspect of managing Multiple Sclerosis:

"Whilst [MRI scans] are important in terms of determining an MS diagnosis, and increasingly in relation to disease-modifying treatment, from a day-to-day perspective, they are one component of a patient's care. They are not always helpful in terms of symptom management and do not always reflect what the patients are experiencing."
Salford Royal Building outisde in the dark
Salford Royal Hope Building. Picture source: Salford Royal NHS Foundation Trust.

The Walton Centre has been another hospital trying to maintain services in unprecedented circumstances. Scans and appointments have been missed, but a dynamic virtual system has helped patients when services have been limited.

A spokesperson for The Walton Centre said: "The COVID-19 pandemic has undoubtedly raised significant challenges to deliver safe & effective care to those living with Multiple Sclerosis."

"We have endeavoured to maintain an effective and sustainable MS service throughout. Although capacity issues have increased waiting times in some aspects of the service, none have been removed altogether.
"The Walton Centre has been one of the biggest users of video platform software in the UK, and this has enabled us to continue with appointments, to review new and follow up patients throughout the pandemic."
Outdooor view of the Sid Watkins building at The Walton Centre
The Sid Watkins building situated at The Walton Centre. Picture source: The Walton Centre.

The government and the NHS have been working together trying to maintain treatment for people with neurological conditions. They will need to devise more strategies to decrease the backlog and begin managing the missed care resulting from reductions in referrals, scans and appointments.

A spokesperson for the Department of Health and Social Care said:

"Hospitals have been open for patients with neurological conditions throughout the pandemic and the NHS message to the public has been clear,- do not delay coming forward so you can get the care and treatment you need.
"To support the recovery of elective services and tackle the growing waiting lists, over the next six months, the NHS will receive £6.6 billion [as we] continue to focus on supporting the health service in delivering services as normal.
"We do not yet know what the pattern of Covid-19 transmission will look like over the next year, and the impact of the pandemic will be felt throughout 2021 and beyond. Working with the NHS, we will continue to prioritise elective recovery so that patients with neurological conditions receive the best healthcare as quickly as possible."

The future for MS patients and their treatment

Currently, much of the attention regarding MS treatment is clearing the backlog and trying to gauge how long it will take for services to return to pre-pandemic levels.

Also, uncertainty still surrounds vaccines. Questions are being raised by the MS community as to how their medication interacts with the Covid-19 vaccination.

There are ongoing studies but much is still unknown. The future outlook is to continue researching and to potentially use the pandemic as a chance to implement necessary changes to services.

Fredi Cavander-Attwood says the results of the research will shape important developments in MS treatments:

"What people with MS are particularly interested in is the research and studies coming through about how effective the vaccines are for people with MS on certain treatments. We are still waiting for data and I think this will have a big impact on what happens next."

Alterations to care, as a result of the pandemic, are also forthcoming. Cavander-Attwood says that the Covid-19 period might prove to be the catalyst.

She said: I think [the pandemic] provides an opportunity and an impetus to change the way of doing things that have needed to happen for many years.

Services are going to change. I think some of these changes are going to make services more sustainable and efficient. Hopefully more flexible for the patient but we need to safeguard against the risks associated with telemedicine for people who are digitally excluded.

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To access more information and documents about this investigation, head over to this repository on GitHub.

If you have any questions or queries, get in touch! You can drop me an Email or contact me on my Twitter.

💻Either way, the future might consist of changes to treatment as well as the way people with MS live their daily lives.@fcavander explains: pic.twitter.com/2VLIyETU6X

— George Willoughby (@GWJournalism) May 31, 2021