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The Unspoken Costs of Being Chronically Ill in the UK

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I know it is a little crass and probably the reason why it is the unspoken cost, but lets talk about money — cold, hard, cash.

No one ever really talks about the monetary cost of being ill. Of course if you have an acute illness then this cost is at most the cost of a prescription or some over-the-counter medication and possibly a couple of days of lost work, if you are self-employed or don’t have sick pay. But what are the costs of being permanently unwell? Ask anyone who is chronically ill, from cancer to rare diseases – being ill is very expensive.

The emotional costs of being chronically ill are well documented, from stress and depression that an illness can cause, to the breakdown of relationships. I want to focus on the monetary costs of being ill – even in the UK.

Here in the UK we are amazingly lucky. We have probably the best “access to all” healthcare system in the world. In a nutshell, we have free access to doctors, consultants, nurses, emergency medicine, scheduled operations, treatments and massively subsidized medication costs. The current cost for a UK prescription as of April 2017, is £8.60. This is amazing when I know that many of my regular medication cost over £100 a month, and I am on eight different prescription medications a month.

Not all medication are this inexpensive. I trialled a particular tablet last year for a few months that cost over £600 a month. Whilst we all contribute towards the costs of the NHS in terms of national insurance and tax contributions, I do think the NHS is massively under appreciated. If I lived in a country where I had had to pay for my healthcare treatments, my hospital costs alone would have totaled over
£100,000 – I know this because I have access to private healthcare through my
employment, so I see every medical bill.

You might very rightly point out at this stage that other than prescription charges, this has not cost me anything as my insurance or the NHS have footed the bill. However, there are things that are not covered by my private or NHS care. For example, appointments with certain specialists. Next month I am seeing the expert consultant on mast cell activation disorder. For the initial consultation and a follow up it will cost me £780.

Why not see a different doctor? Well, doctors that specialize in rare illnesses are themselves as rare as the illness and there are only a handful of doctors who specialize in MCAD in across the world. You may think I am exaggerating, but in my appointment last Saturday with the consultant cardiologist POTS specialist we talked about the beneficial use of oxygen and he said, “I will speak to a colleague of mine in Calgary [Canada] because I know he has a patient that has also had some relief, so we can compare dosages and usage.” One reason why specialist doctors are so rare for these conditions is because they lack funding — the money goes behind illnesses that kill the most people – therefore if you happen to have a rare condition, prepare for there to be little access to specialists and little research done worldwide.

Tests can be expensive too and not all of these are covered by NHS or private healthcare. Any tests next months at the MCAD appointment will be coming straight out of my rapidly depleting savings account. The genetic test I had to confirm the Ehlers-Danlos syndrome diagnosis was £1300, and that was just a simple blood test. At that point in time I had run out of savings, so a very good friend of mine offered to pay for the test for me.

The wheelchair I use is very specialized because it has to be lightweight and I have to be able to use it and sit in it without stressing or dislocating joints. The NHS covered the first £150 of a specialist wheelchair – only if I am a permanent wheelchair user. My chair costs were just over £3000 and if I were to add the proper electric wheels to it, it would be a further £4000. Last year I opted for a cheaper electric wheel solution which was just shy of £1000. All other mobility aids are not covered — specialist crutches, walking sticks, braces for joints, all of these can run into £100s each.

Then of course there are other machines and equipment, like a portable oxygen concentrator. Thankfully I managed to find a local secondhand one which was only £400, but new they are thousands. We had to change our bed so I can try and get comfortable and prevent dislocations during the night. We now have a profiling bed. This is similar to a hospital bed, meaning I can control the head and feet and move it around to try and get comfortable. As a young(ish) married couple we didn’t want twin beds, so we needed to find a double that was individually adjustable; after all, my husband doesn’t want to wake up being flung across the room because I am raising my head because my shoulder has gone out again. So, that set us back another £2500.

Yes, I probably could have gotten that cheaper, but I didn’t want a bed that looked like it belonged in a nursing home or a hospital – I spend enough time in hospitals,
I don’t think it is unreasonable that I don’t want my home to look like one. So
actually, for what we required there were only two options that were affordable
to us. Of course, if we had tens of thousands to spend then there are more

Do not get me wrong, I am not moaning, it is what it is and I know that I am incredibly lucky to live in the UK where we have a phenomenal healthcare infrastructure and support system. I also am lucky enough to have the amazing and continued support of my family and friends. There is something else though – I have always been fastidious about having income protection insurance (critical illness insurance). I am still employed and I still receive a percentage of my salary and I still pay tax and national insurance just like everyone else. Without that protection in place we would have been in a very dire situation indeed.

As I mentioned it is not just rare illnesses that cost the person — all illnesses have a monetary value associated with them. Not even all forms of cancer treatment are available without costs. So next time you see someone crowdfunding for the cost of treatments or cost of new specialist equipment, please bear in mind how expensive it really is to be ill.

My parting note and the best advice I can give you is – if you cannot afford to live without your salary (which let’s face it, unless you are very wealthy most of us rely on our salaries) please, please invest in an income protection/critical illness insurance policy; you never know what is going to happen in the future.

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Thinkstock photo by mpalis

Originally published: April 12, 2017
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