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  • Writer's pictureAndrew Collinson

The financial burden of AD

Even in a country with universal healthcare

Here’s me feeling very silly taking a selfie on the way to St Thomas hospital for a checkup at Ophthalmology due to AD related issues (I was dead against coffee but my wife got me onto caramel oat milk lattes and now I can’t help myself). Another appointment, another £100 on train tickets and parking alone. 

Now let me start by saying I thank my lucky stars and understand how privileged I am to be born in the country I did. If I had the misfortune to be born in so many parts of the world the cost of my care would have been crippling and for that I will be eternally grateful. 

However the NHS is of course not “free”, we all pay into it to make sure no matter your station in life you have access to healthcare. Which I do believe is a cornerstone of any society that can call reasonably themself civilised. Unfortunately having chronic AD means that I have almost incessant regular costs on top. Costs which I only really realised how much they added up when I sat back and really thought about it.

I live in the Midlands, around half an hour from Cambridge, to receive the care I need, St John’s institute of Dermatology in Guys and St Thomas Hospital in London is by far mine and many others best option. Again I must count myself lucky as my 4 hour round trip pales in comparison when compared to the distances others have to travel. The postcode lottery is a very real thing and the care I’ve received locally is simply in a different universe at St John’s. 

Again this is a small price to pay for the access I have to world class experts and eye wateringly expensive medication. But this does add up, over the last 6 months I’ve spent around £1000 in train tickets alone (all of which have involved getting up very early or rushing in late to try and avoid the sky high peak prices).

Another part of AD which again other sufferers will probably know all too well is the constant experimentation of any and all potential treatments. From diets, to medications, to lifestyle changes, we’ve tried them all. These often unfortunately come with a price tag. For example, I recently invested in a water softener through Harveys (who’s service was excellent from start to finish by the way). There’s a fair amount of evidence that hard water can irritate or even cause skin conditions. This came in at a cost of around £2000 with regular payments for salt blocks to maintain it. I also recently bought a Dyson purifier which was another £600. 

As I’ve mentioned in previous posts in the winter/spring of 2022 I had a horrendous flare. I was covered head to toe in rashes and weeping sores, I was shivering from infection, I had an ulcer in my eye, I was getting a couple of hours of broken sleep at night and feeling like I was being eaten alive 24/7. My wife and I would finish work, have dinner and just go walking until it was time for bed as I simply couldn’t just sit and read a book or watch tele with the mindbending itch. I walked into my GP, psychologically on my knees, to be told that my referral to guys and St Thomas would take around a year. How anybody can be expected to wait a year in this situation is beyond me. I was then forced to find a dermatologist who worked in the clinic that I needed to be referred to and book a private appointment on Harley Street knowing that she would see the urgency of the situation and expedite my appointment. This came at a cost of around £300, rounded up to £500 for my wife and I’s train ticket as I needed her support. 

It terrifies me that there are people out there suffering like I was without the resources and knowledge to be able to bypass that situation like I did. 

Then there’s the endless smaller costs which rack up; I use more expensive washing detergent, hypoallergenic pillowcases, compression sleeves to help the itch, days off work for appointments, all manner of supplements which may or not help etc. The difficulty is I would give just about every penny I have to be free of this condition and so when an advert pops up for the latest “treatment” for £15 the voice at the back of my head says “it’s only £15 its worth a try”.

Further to this It does really hammer home the importance of advocacy when I walk into a medication review appointment and I’m told that moisturiser will no longer be prescribed through the NHS unless specifically prescribed by a dermatologist. This is the thin end of the wedge and yet another example of the dismissive and unsympathetic attitude towards those suffering with chronic skin conditions. This is NOT a bit of a rash, this is a potentially life destroying disease and there should be no attempts to limit the medication that people so desperately need for a condition they did nothing to deserve.

When I was growing up, particularly when I was very young, my parents really struggled financially due to my Dad’s carpet cleaning business going under and being left with a huge business loan. My Dad worked 24/7 to the point my Mum said she felt for a time like a single mother. There was a Mum’s and children’s group that cost £1 per meet up and they couldn’t afford it. Yet my parents moved heaven and earth to try everything and anything to help ease my suffering. Once they felt they’d exhausted the NHS route this involved all sorts of private therapies and treatments which came at a cost they simply didn’t have.

From the age of 23-28 I was building my electrical firm business, over these years I was working flat out physically and mentally; I was up at 6am, spent the day working as fast as my hands would move until around 6 or 7pm and then I was in the office at home until at least 9pm, day in, day out. I worked and saved obsessively over my apprenticeship so when I started my company I’d just bought my first house and at that time I VERY much did not have the money for what felt like a mountain of additional costs. I also VERY much did not have the time to be going to all these appointments and missing days however I simply had no choice.

I’m very fortunate now that I have since sold my electrical firm (certainly not for mega money) however I’m now in a position where I can reasonably handle these extra costs. However when I sit and think about this it goes entirely against the ethos of the NHS. Now that I've started this advocacy work I think of these things more through the eyes of others and there are many who simply are not in a position to be spending this kind of money and there’s no reason why they should be expected to do so.

I’m in the process of applying for PIP (personal independence payment) which if successful could result in a payment of £68.10 per week. This would significantly help with these additional costs. I will keep you updated on how this goes. Despite the eligibility criteria including “having a long-term physical or mental health condition” and “needing help managing my medications and treatments” for example, I still feel illogically a pang of guilt for applying. I think the dismissive societal attitude towards skin conditions has unfortunately permeated even me. However we are supposed to live in a system which doesn’t punish people financially for being born with a condition that is completely out of their control and yet this has been the case my whole life.

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