Sunday, 26 February 2017

A quick rant about the NHS approach to eczema

Followers of this blog will know that, about 8 weeks after my third baby was born (he is now 3), he developed eczema that was so severe, he looked like he had been burnt in a fire. Think I'm exaggerating?

This pic was taken on the 31st October, when he was about 6 weeks old:


Clear skin.

By 18th November, we were in Eczemaville:



By 4th December, we were in hell:



The next pic is one of those random snaps, probably taken by another child, but for me it encapsulates how I was feeling at the time, the concern I felt for him, the tenderness, and how I could not take my eyes of him, and how I wanted to make it all better.


And here's one more so you get the idea of how severe baby eczema can be. (I had no idea until it happened to me).



I've actually had to scroll my screen down so that I can carry on writing this post without having to look at these pics. They literally cause me physical pain.

Anyway! Let's cheer up because there is a good end to this story.

After a few more months of living with eczema (during which time my dad was also living with terminal lung cancer - yes my life really was pretty shit around that time), we had a few glimmers of improvement under NHS care.

At first, just the heavy petroleum jelly they prescribed to be slathered on liberally, seemed to make a bit of a difference. At times his skin just looked 'red' rather than all broken as it is in the last pic above. The steroid cream also worked in that it helped the eczema subside, but as soon as we took our 'steroid break' it would flare again. Other times it would flare without explanation. It seemed there was no fix, no cure, and I was offered disability allowance, which I did not apply for, because I felt that by the time the forms were processed, he would be better. I was determined he would get better, and I began to read online articles and discussions obsessively.

In February I was reading an eczema group on Facebook and I 'overheard' a conversation between other eczema mums about a miracle doctor called Dr Aron. The way they talked about him was almost evangelical, and I was initially skeptical - but curious. This was a 'proper', 'mainstream' doc, who was a BUPA doc in the UK, and also worked in South Africa. I googled him. Yes, he really was a doc. I trawled the internet for other review of his work, or any mention. All I could find was the same breathless praise, and before and after pics of children who looked just like mine one minute and fixed the next.

A consultation with him cost £80, plus the cost of a private prescription (I can't remember exactly how much that was, around £30 I think). His method is to prescribe a mix of creams, most of which you get at some point or another under the NHS approach, but just separately, rather than mixed together. Our mix contained mostly diprobase (a moisturiser), plus a small amount of anti-bacterial cream and a small amount of steroid cream.

A couple of things that Dr Aron told me about eczema made a lot of sense, 1 - that the skin is infected and that by applying steroid cream by itself as per the usual NHS approach, you will make it 'look' better because the inflammation will die down, but once you stop the steroid, the redness etc will all come back because you have not addressed the underlying infection, and that 2 - slapping on thick moisturisers just gives the bacteria a lovely moist place to breed and frolic.

I can still remember the day the postman (who was as concerned as everyone about our poorly baby) brought the tub of cream. It was the 4th March.

This is the final pic I took before the first application:



This was 24 hours later:


This was 48 hours later:




We never looked back. It took a while. We had so much contact with Dr Aron (all via email) - probably around 50 or 60 emails over around 6 months (all for our £80). Day or night he was there for us and I quickly began to understand why so many people talked about him as if he were some kind of saint - because he is.

It wasn't all plain sailing - we had flare ups and little changes to the treatment, especially to get rid of the stubborn areas. But get rid of them we did, and, following the Aron Regime, we slowly reduced the applications of the cream until - we didn't use it any more. I still have some left in the second tub, and my son has never had eczema since. Here are the two of us recently, he's a peach, in every sense, as you can see:


Ok, so here's the rant. Over the course of the past 3 years, I have encountered dozens of doctors and medical professionals, due to the fact that our son also has bouts of asthma (less serious now but we had about half a dozen hospital admissions over his second year), and severe allergies to egg and dairy.

Each time I meet a new doctor, nurse, dietician etc, they always ask about his eczema. And (I hate writing this because god bless the NHS and all that, but it's true), in pretty much the majority of cases, they are dismissive, disinterested, or even scornful of the Dr Aron treatment.

It's as if they just see me as a slightly deranged mother (and to be fair on several of the occasions I've been talking to them, I've been wearing a coat over my sick spattered pajamas having rushed a child into A&E following a night without sleep). But it's as if, as soon as I say, "I found a doctor on the Internet", they kind of fill in the blanks for the rest of the story themselves? To me, this feels pretty disrespectful, as it's usually patently clear that they are not interested in hearing about it and this makes me feel rather daft and I usually find myself trailing off, feeling slightly embarrassed and / or defeated.

But as these situations occur again and again, I've started to get more irritated by them. The point is not that every NHS doctor should be taking on board the Dr Aron regime and that I should be made a Chief Advisor to the Health Secretary. I'm not arrogant, and I'm not stupid enough to think that just because Dr Aron worked for us, that automatically makes it a scientific breakthrough that will work for everyone else. But what bothers me here, is the lack of CURIOSITY.

How can professionals who deal with children and babies with eczema - who are suffering like my son did - every single day, be so utterly disinterested in a the story of a woman who is sitting in front of them telling them there may well be something that could help them? All they would need to do is simply jot down a note, 'Dr Aron', stick that post-it on their monitor, and I'd be happy. Do they not at least want to look it up and see what the deranged woman with her coat over her pajamas is wittering on about?

I find it bizarre. At the very least, think of the money they could save. After we found Dr Aron, we threw away about 15 or 20 different pots and tubes of cream, all of which had been opened but had failed to help our son. Had we not found Dr Aron, we would have continued to cost the NHS money on these creams, we may have got worse to the point of hospital admissions (many do), and we may well have caved in and accepted the disability benefit.

That's not to mention the personal toll for a family of living with this terrible condition. Or the suffering of a child.

So please, if you are NHS professional or person of influence reading this blog - don't take my word for it about Dr Aron, I don't expect you to. But please, for gawd's sake, just BE CURIOUS. Lack of curiosity really is the most depressing trait I can think of in a human being.

If you want to know more about Dr Aron, here are a few places to start.

Fifty Dr Aron case studies including before and after pics

Instragram account of before and after pics

Facebook group (nearly 20k members) of his patients and patients-to-be

My original blog post about our experience with him

Telegraph article about my experience with him
(always amazed when I see from the pic in this article how much hair I had lost. you don't always notice at the time just how much life is taking it's toll! Luckily my hairline is back where it was intended to be now! Another thing I have to thank Dr Aron for!)


Thanks for reading all. Even bigger thanks for being curious. Albie says Cheers.










Oh and don't forget my book is out on March 16th! A must for every pregnant woman, but especially the curious ones! ;-) Preorder here: https://www.amazon.co.uk/d/Books/Positive-Birth-New-Approach-Pregnancy-Early-Weeks/1780664303/

























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