The real cost of Multiple Sclerosis

Who Broke The Piggy Bank??

I sent out a vote the other week to find out what people wanted to read about and one the list was the hidden costs of MS. A lot of people were interested in reading about both of the topics that I suggested, so I am going to cover the use of Botox in MS and also this as well… want to keep you all happy 🙂

AS we all know, MS is pretty naughty. It spends years going undetected and troubling healthcare practitioners. It evades detection and fathoms consultants into thinking it might be other diseases. Once diagnosed, it brings an onslaught of both visible and invisible symptoms that can cause a significant amount of distress to each person. One of the things that is rarely talked about is the other burden that MS can bring… a financial burden, especially for those who don’t claim benefits, and those who are unable to work any longer due to their illness.

There are certainly two aspects to the financial burden of having a disease like MS. There is the financial strain for an individual and their family, and there is also the financial cost to society (employers, the NHS etc). Of course there is also the emotional burden of the disease but naturally I cover this in a multitude of other blogs and so this one is looking at this from a different angle. I am going to try and look at both of these separately as best as I can (although I am certainly no expert in either – just a lowly MSer myself)

There have been a large number of studies looking into the cost of having MS prior to 1999, and new studies have also been performed since the introduction of far better medication interventions and more efficacious DMTs. The availability of these DMTs has definitely led to the change in how patients are treated and managed, and there is certainly a focus on earlier intervention than there used to be. We have someone in our family who was diagnosed many years ago, and their treatment pathway is so dissimilar to my own experience you would think we had a different disease.

Over time, there has even been a change in the diagnostic criteria of MS. A consequence of this is that the actual prevalence of MS is very different to what it was some years ago. There has been an increase in the number of people diagnosed with the disease, and it is increasing even still.  With the increase in better treatments, there has been an alteration in the typical MS patient with a typically ‘lower’ severity of the disease, a generally more stable disease pattern and patients who score lower on the disability scale. Having said this, it is suggested that the average time to diagnose someone with MS is still around 8 years!!

I know from looking at the person with MS in my family, if they had been treated in the manner that I had from an early point in their diagnosis, their disease would not have progressed in the way it has, they would not have such severe disability at a young age (pre-retirement) and the disease would have less of a financial burden on themselves and on the NHS.

In a study consisting of nearly 800 people with MS across the whole of the UK (with respondents from 26-89 years of age) only a third were employed. Generally the employment rate in the general population is around 75%… Those who did work, 92% reported that they worked only part time, and this was because of their MS. This compares to a quarter of the general population who work part time and this is often through other commitments such as family care responsibilities. I thought that this was really interesting because it shows how having MS can have an impact on someone’s ability to work.

An area of great interest to researchers is the overall cost of MS to the NHS and how interventions improve quality of life. NICE in the UK tend to use these indicators in order to work out if a person is eligible for a treatment and also whether treatments are cost effective or not. The newer disease modifying treatments are a massive cost to the NHS – my own disease modifying therapy is approximately £2500 per month (and some of that is reduced by the pharma company). (This does not include my other costs to the NHS by the way… not willing to go through all of those)   However it is reported that the use of these more aggressive modern DMTs cause a drop in disease activity and increase quality of life such that there are better outcomes for the NHS overall.  It was indicated that someone with a mild form of MS may cost the NHS around £10,000 a year, whilst someone with a more active form such as mine would be nearer to £40,000.

I said that i would also concentrate on the financial burden to the individual – and I haven’t forgotten. There are these hidden costs that are actual pounds out of my own bank account. I also want to talk about those… I decided that I would use a list so you can check them off against your own and we can play a kind of MS costs me lots of money bingo game? I would love for you to look at mine and if you have any more of your own, please add them into the comments.   OK here we go.


  • Incontinence products – why oh why are they so expensive and why does my bladder treat me like I am a child?
  • Oh and new trousers when I had an accident on the way to work…
  • Delivery costs for my online groceries because I am too tired to shop in the store
  • Delivery costs for anything actually because I don’t shop
  • Chopped vegetables because I am dangerous with a knife
  • Cost of random disability aids – like my heat pad and my crutches
  • Precooked ready meals
  • Working from home (i seem to spend more??)
  • Expensive insurance premiums to cover my risk including health and income protection, travel, car insurance… the list is endless
  • Buying more expensive items just so I do not have to bother shopping around (what a faff shopping around is when you are just too tired)
  • Booking hotel rooms for overnight stops because I cannot travel to places and back again in a  single day
  • Being limited to the distance that I can drive even with my automatic car due to leg and fatigue issues – not an expense but I wanted to put it in anyway
  • Additional petrol because I drive around for hours lost and confused
  • Things booked and cancelled that seemed like a good idea at the time (and couldn’t get a refund on)
  • Things bought and left because I was able to use them at the time and then couldn’t once they arrived (or forgot I bought them… the most recent thing was I was convinced I wanted to try and roller skate (WTF) and I went to pick up the skates and I couldn’t even lift up the box!!!)
  • Buying drinks in cafes just so I can use their toilet (anyone else feel embarrassed about going into places?)
  • A medley of supplements (some of which I need to remortgage my house to buy)
  • Prescription charges – although the PPC is very reasonable
  • Private healthcare appointments  – like the one for my hair loss, physio, massages, the MS personal trainer, migraine specialist… the list is endless
  • Monthly hospital treatment sessions (plus other hospital appointments) – buying parking, coffees, lunch etc. make it very expensive to be a MS patient!!


There was a major financial burden to me straight after I was diagnosed and I have not put it into the list because it currently doesn’t apply but I had to work part time, take a pay cut and then have to pay to be retrained in another career pathway. I think that one of the little talked about costs of having a disease like MS is the financial burden caused by your inability to work in the way you once did.

The reason that I have not put it into this bingo list is because I am now overcoming that and am grateful to say that I have gotten to a point where my retraining has actually gotten me to a better point than I was before I had M S, but it has taken time and it has taken a LOT of resilience (oh and a very supportive husband.

Anyway – there’s definitely another blog in that topic.

Keep your chins up folks and let me know what you think about the BINGO

Z xx

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