120,000 people in UK live with multiple sclerosis

31 May 2024 Consultancy.uk 8 min. read
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As the NHS’ resources come under increasing strain, knowing how many people in the UK have severe conditions is important when it comes to prioritising funds, treatment and staff time. A new study from healthcare consultancy CF has set out to document how many people in the UK live with multiple sclerosis.

A lifelong condition of varying severity, multiple sclerosis (MS) is a condition that can affect the brain and spinal cord, causing a wide range of potential symptoms. While it can occasionally be mild, MS can cause serious disability, with symptoms including problems with vision, arm or leg movement, sensation and balance.

MS statistically causes a slight reduction in life expectancy for those diagnosed, with its discovery most common between 20 and 50 years old – though it can develop at any age.

120,000 people in UK live with multiple sclerosis

While there is no cure, in many cases, it's possible to treat the symptoms by reducing the inflammation and damage to the nerve cells that cause MS to worsen. But slowing the progression of MS in its severity often depends on early diagnosis and quickly beginning treatment. To that end, knowing how many people in the UK have MS, and which demographics are most at risk of developing it, is crucial to ensuring patients have the best chance of retaining their quality and length of life – especially after a decade of austerity has hit NHS funding.

New methodology

In a bid to highlight current MS research efforts and the continued need for better services, policies to address the immense challenges posed by the neurological condition, consultants from CF have investigate the state of care in the UK. Conducting an analysis of data from 121,314 patients with MS nationally – a larger patient cohort than the 117,420 previous work had extrapolated from. At the same time, CF precisely counted the number of unique patients who have presented for care in the past five years, and used methods to accurately account for known inconsistencies of coding MS for outpatients.

This meant that for the first time, the consultancy states it has “a numerator for every single person with MS contained within the hospital episodes statistics covering all 57 million people at record level by crossing band” – providing an accurate population size moving forward. As a result, CF asserts that there are actually more than 3% more people in the UK living with MS than earlier estimates.

By applying diagnostic classification, analysing the number of patients with a recorded diagnosis and removing those who died, CF identified 15,000 more people with MS than previously thought. And the researchers also identified further evidence of which demographics are most at risk of the condition.

According to the insights provided, 71% of people with MS are women, while 29% are men – confirming previously held beliefs that it could be as much as three-times more common in women. Meanwhile, the average diagnosis came at 45.5 years old – though this fell in certain groups; most notably in women of mixed ethnicity, who had the youngest average age of diagnosis at 35.7 years.

Concluding, CF notes, “Understanding the true number of MS patients is vital for [a range of factors.] Accurate healthcare planning, care models and resource allocation, informing research and clinical trial cohorts, [and] identifying disease patterns and risk factors.”

While CF did not point to specific cases on this front, headlines were made earlier in 2024, when it emerged that hundreds of MS patients might have missed out on potentially life-improving medication in Wales. A healthcare ombudsman’s investigation found that the Aneurin Bevan health board had failed to provide fampridine to patients, even though it was approved by the Welsh government as an NHS-funded treatment in December 2019. The investigation by Public Services Ombudsman for Wales Michelle Morris found as many as 500 MS patients in the health board area in south-east Wales had missed out on the treatment.

Speaking to the BBC about the findings, Rachelle Ledsam, who has MS and had missed out on the drug, explained, "I was really upset – but that’s now turned to anger, because I think 'why can’t I have it'?... Aneurin Bevan [health board] have been hopeless, and I just think how many people are in my shoes. It’s a massive change – if it works it’ll help with my walking, my balance, my confidence."

The health board has since said it was "working through a plan" to introduce fampridine across Wales. But a 2022 report from the MS Society also suggested that there are more hurdles at play than just slow-moving bureaucracy. When the researchers asked neurology healthcare professionals what they thought were the biggest challenges ahead, 88% said increased caseloads and 78% noted a lack of funding for future service developments as being their two leading concerns.

The report added, “If nothing changes, these issues are likely to seriously impact standards of care for people with neurological conditions. The simple fact is that no service can indefinitely deal with increasing caseloads without additional resources, yet this is the future many health professionals see for their area.”

Need for more resources

Discovering that there may in fact be 15,000 more cases of MS in the UK than previously thought also suggests there is need for change in how early symptoms are approached throughout the health system. Jimmy Rudiger, who was diagnosed with MS in 2023, told Consultancy.uk that there are a number of areas where healthcare providers can overlook warning signs, to the detriment of their patients.

“Realistically it took around 2-3 years to be diagnosed,” he recalled. “I’d been experiencing minor symptoms for a considerable amount of time before then. Things like patches of numbness on my skin, headaches, losing control of my left hand. I saw a doctor after losing the ability to walk properly for a month, but this was dismissed as being due to my being overweight, and no further tests were done. I trusted the doctors at the time, although subsequent testing and discussions with neurologists have made it very clear that I’d been having relapses for around 3 years before diagnosis.”

It was not until he lost his memory and was taken to the local hospital that the neurology department considered other options. From there, diagnosis followed “relatively swiftly within three days”, although it also involved “several unnecessary and invasive tests”. Looking back, Rudiger finds it “disappointing” that his GP’s initial decision, made “without any kind of testing or evidence” had led to a compounding of errors and relapses “that could have been avoided”.

“I feel it’s important to remind people that relapses for MS aren’t a small deal,” he added. “Your brain is being attacked, and brain damage isn’t like a bruise that will heal. Once it’s damaged, it will likely stay damaged, and once something is gone it may never come back. That might be a single memory, feelings in your little finger, or that might be the ability to walk, or everything you’ve ever learned. Extreme cases people have even lost the ability to swallow. An underfunded NHS forces hospitals to make decisions to delay like that did for me, and I don’t want my future to be someone else’s gamble.”

Unfortunately, Rudiger’s experiences may not be a rare occurrence, either. With NHS hospitals understaffed and under resourced, he noted that the department at the hospital he receives treatment from has “two doctors and one consultant, covering an area of nearly one million people”. With such a “tiny department responsible for thousands of patients”, he warned that the lack of resources would continue to lead to situations like his, “where symptoms are ignored for years until something finally breaks.”

“I just wish I didn’t have to experience such an extreme to get to that point,” Rudiger continued. “Since being diagnosed, I’ve tried to be very open about my experiences and I’ve found myself supporting others waiting for a diagnosis. Sadly, a lot of that support has been chasing up doctors or hospitals for test results or appointments. Two of the people I’ve supported have since been diagnosed to, and my fear is that without this chasing they’d have been left like myself, until more considerable damage had been done.”

And while after being diagnosed with MS, Rudiger’s treatment has been swift, and “to the credit of the hospital”, in a month he had been referred to the outpatient department, where “treatment options were discussed at length”. This included working out a plan for the strongest but least time-consuming treatment to be taken at home, delivered by a nurse who also “spent an hour guiding me through how to administer medication”. But many beyond this, support has been hard to come by.

“I was a long way from having capacity to look after myself and duty was rather unceremoniously dumped onto friends and family with no discussion. There was no care plan, no guidance given as to what to expect, and no information about what to do if more symptoms presented… Within a week of being released from hospital I’d fallen for online scams that I’d have never fallen for before, costing me £100s that I simply couldn’t afford. Previously simple tasks like planning meals, housework, self-care all became near impossible for me to manage, and it was things like this that really caused a lot of distress. Obtaining a diagnosis was one thing, but being 32 and suddenly being unable to shower or use a toilet was a nightmare.”

Looking ahead, Rudiger hopes that knowing there are more people living with MS than previously thought can help the NHS and the government to plan and improve support accordingly.

In conclusion, he warned, “Staffing is far too low. The NHS is forced into a situation where they have to wait for something big to go. I’m also surprised at how little support was given in the immediate aftermath of diagnosis, working class people are very unlikely to be able to simply stop working and afford to keep a roof over their heads.”