The unspoken cost of being chronically ill.
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 the 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 you 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 subsidised medication costs. The current cost for a UK prescription as of March 2017, is £8.40 this is amazing when I know that many of my regular medication cost over £100 a month, I am on 8 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 totalled 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, 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 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 specialise in rare illnesses are themselves as rare as the illness and there are only a handful of doctors who specialise 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. The reasons that specialist doctors are so rare for these conditions is that they lack funding, the money goes behind the illnesses that kill the most people – therefore if you happen to have a rare condition prepare for there to be little access to specialist 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 EDS 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 specialist 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 cover the first £150 of a specialist wheelchair – only if you are a permanent wheelchair user. Even someone with a lower limb amputation may not be a full-time wheelchair user. My chair costs was 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 £100’s each.
Then of course there are other machines and equipment, a portable oxygen concentrator, thankfully I managed to find a local second hand one which was only £400 but new they are thousands. We had to change our bed so that I can try and get comfortable and try 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 wasn’t twin beds, so 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 got 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 options.
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 cover), because I have this 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 sufferer, 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 crowd funding 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 and you never know what is going to happen in the future.