The Hidden Costs of multiple sclerosis (MS) 

New research has shown for the first time what people with peoplewith MS have had to spend themselves to maintain an independent standard of living.

The study from Swansea University Medical School has found that people with MS and their families are having to fund up to 75% of non-medical costs from their own pockets. Previous research in this area has only looked into the cost of drugs and overnight stays in hospital. The cost from people’s own pockets has not been looked into in any detail before.

What is Multiple Sclerosis? 

Multiple Sclerosis (MS) is an autoimmune neurological disorder that is the commonest cause of disability in adults of working age.  MS affects more than 120,000 people in Britain and around 2.5 million people worldwide. The symptoms of MS have a profound effect on people’s day to day lives due to the physical and cognitive effects of the disease that can lead to loss of employment and a profound personal impact. MS is a particularly harsh condition, as can affect people just at the point that they are typically starting to really flourish in their careers and start families. Costs in MS have focused on the high cost of treatments that mainly target early MS and the personal costs have not being looked at in detail.

The Study 

The UK MS Register is a research database operated by Swansea University and funded by the MS Society. Data is routinely collected from people with MS and from their doctors and nurses both online and through their specialist. It’s one of the largest databases globally with real world data in MS. In partnership with Sanofi a survey about the cost of MS both to society but also to the person was sent to people with MS by the UK MS Register. Five hundred and thirty seven people with MS completed the survey over 6 weeks and this was combined with data that the person had already given to the MS Register. This included: the severity of their disease, type of MS, age, gender, employment status and their ‘normal’ quality of life.

What did we find? 

We divided costs into medical and non-medical. Medical costs include: admissions to hospital, rehabilitation, blood and other tests such as X-Rays and MRI scans. Non-Medical costs include: adaptations to houses – including fitting of handrails and extensions, wheelchairs and car adaptations.

The medical costs, paid for by the NHS or social care were £3,244 per person per year and the costs increase as the disease became more severe. For the non-medical costs 75% came of out peoples own pocket (£939 per person per year), these costs dramatically increase with increasing disease severity.

These adaptations enabled people with disabilities either to stay at home or get out of hospital more quickly, safely and efficiently, indirectly reducing costs to the NHS.

The MS Register is open to new participants, if you have MS and live in the UK, sign up today and help make sense of MS!

 

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