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:

Saturday, 4 February 2017

We need to act now to save Independent Midwives - and birth freedom!

Independent Midwives...where do I start with what I owe to them? Without Independent Midwives, I don't know what kind of birth I would have had with my second baby. Traumatised and scared after my first birth (induction, forceps etc), I discovered, right at the last minute, that you could 'opt out' of the NHS. I contacted Independent Midwives Caroline Baddiley and Chrissy Hustler, and as soon as they walked into my living room for our first meeting, I knew that everything was going to be different from that moment on.

It's awkward to 'big up' IM's because doing so contains the implication that there is something wrong with NHS midwives. And of course, this is not the case. There are many many fantastic midwives in the NHS and many women have fantastic positive births under their care. The problem that I had, and that drove me to seek an alternative, was that I could not guarantee that I would know the midwife who attended me. In my local area at the time, midwives came from a large 'bank', and I was told I probably would not know the person who turned up to my home birth, and she may not have any experience of water birth.

I wanted to know my midwife, and I wanted a water birth, but also, and perhaps more than both of these things, I wanted someone who 'believed' in birth (mainly because at that point, I didn't!). I wanted someone who would not feel the need to clock watch, or offer unsolicited pain relief, or give routine examinations that I didn't want, or box tick on a clip-board. I wanted someone who would have the confidence in my birthing abilities that I lacked, and who would bring a special positive energy to my birth space. Basically, I wanted the UK's answer to Ina May Gaskin. And that's exactly what I got.

After that beautiful birth, that changed the way I felt about my body, and was one of the many factors that triggered me to launch the Positive Birth Movement, I learnt that IM's were under threat. By this time (around Spring 2013) I was pregnant with my third baby, and was writing this blog really regularly (remember that?!), and so I used my blog, and then my new role as a writer for Telegraph Women, as a platform to voice support for them. They were being told that, due to an E.U directive, they would need to get insurance, or face becoming illegal.

Now, if you're not familiar with IM's this part might shock you: At this point in time they did not actually have any insurance, and had never had it or been required to have it.

For some reason we've become so familiar with insurance and litigation that the idea of someone being uninsured can make us feel quite uncomfortable. It's as if the very act of being uninsured might make a person less responsible or more likely to do something dangerous.

Of course, this is not the case. When Caroline and Chrissy came to that meeting in my living room, and explained to me that they were not insured, I couldn't have cared less. Ultimately, even if they had been insured, I would only have got a payout if something had gone wrong due to their negligence. If something had gone wrong due to mother nature, or bad luck, I probably would not have got a penny. Listening to these two fantastic women at what was effectively their 'job interview', I knew I had absolute confidence in them and that they would be the polar opposite of negligent. They would give me one to one care, be by side throughout, and they would know me and be emotionally invested in my welfare. I trusted them completely.

In some ways this is irrelevant, because the law, rightly or wrongly, did continue to demand that IM's found insurance, and they did go on to find cover. A different and completely wonderful IM, Tara Windmill Robson, attended my third birth, and she and I celebrated in relief when this solution was found. Since then I've promoted IM's wherever I can, as I believe (as I wrote in this article for the Telegraph), that IM's hold the key to birth freedom. Without them, we risk birth becoming more medicalised, more institutionalised, and depersonalised. Without them, women's choices narrow overnight.

It seemed like IM's had been saved, but behind the scenes, all was not well. I learned in the first week of January this year (2017), that they had received the news from the NMC (Nursing and Midwifery Council) that they could no longer practice.

This seemed unbelievable! Why had this happened?! Wasn't everything all sorted?!

I'm still not 100% sure I understand the situation fully. In this blog post I'm just going to tell you what I do know...

First of all, the NMC...

I've had a brief encounter with the NMC recently after I wrote this article for the Guardian which referenced the situation with IM's. They took issue with the paragraph about IM's as it originally appeared, and boy-oh-boy was there was a lot of to-ing and fro-ing with the Guardian Reader's Editor and myself as we tried to amend it. (not much fun when you don't have any childcare and you have to navigate the situation with Bing Bunny in your left ear and a 3 year old sitting on your arms).

One big problem is that the NMC seems to lack understanding of what an IM actually IS. They took issue with my statement in the Guardian that the option of an IM had been removed for women, saying that their ruling only affected a 'small group of IM's' who are members of IMUK, and that all of the other IM's in the country do have the right insurance and can therefore still practice. They seemed keen to diminish the impact of their decision, consistently stressing the tiny number affected, for example, in their original statement on the issue, they say:

‘The decision today only applies to around 80 members of IMUK who rely on their indemnity scheme. In contrast, more than 41,000 midwives in the UK operate with adequate indemnity cover.’

Anyone reading this who knows nothing about the issue could easily take away that there were tens of thousands of IM's! In fact, that figure of 41k includes every midwife on their register, including all of the midwives in the NHS. However, putting those two figures next door to each other certainly does make the number affected seem utterly insignificant! Well done, NMC PR department!

"Anyway", the NMC seem to be saying gaily, "there are lots more Independent Midwives who can still practice!" It's not a problem, they say, because all of the IMUK IM's can just get a job somewhere else! No worries!

Um, well, that's not quite the full picture. IMUK midwives are different. They are SELF EMPLOYED. The other UK 'independent midwives' (by this the NMC means private midwives working outside the NHS) are part of private companies. Anyone who has ever tried being self employed will tell you that this is a very different experience to working for a company, in particular in terms of autonomy, than being employed by a company, however small. 

So the Independent Midwives that the NMC has got rid of are basically unique. A woman who wants an IM - and by that I mean a SELF EMPLOYED and therefore FULLY INDEPENDENT MIDWIFE, not a 'Private Midwife' - in the UK at the moment, can no longer hire one to be at her birth. 

Her only option, if she wants to birth outside of the NHS, is to use a private midwifery company. If she is in London or the south east, she can try Neighbourhood Midwives. If she is in Essex or the Midlands, she might get lucky with One to One Midwives.  But if she's anywhere else in the country, she would have to try a company called Private Midwives, also known as UKBC (UK Birth Centres). 

Let me tell you a couple of interesting things about Private Midwives. 

First of all, they are the only private midwifery company that claims to cover the whole of the UK and Ireland. 

Second of all, they are the people who raised a complaint about IMUK Independent Midwives insurance provision with the NMC. 

Yes, you heard correct. IMUK, a group of individuals that are basically the only competition to Private Midwives / UKBC, has effectively been put out of business by the NMC decision, the wheels of which were set in motion by a complaint (which I have personally seen and read) from their main competitor...UKBC.

But that's OK, say the NMC, because all the IMUK midwives who have been put out of business by the decision can just go and sign up with Private Midwives / UKBC!!

Well there's a few reasons, apart from the obvious, why they may not want to do that. 

First of all, being employed as a midwife even if it is outside the NHS is not the same as being an Independent Midwife. You are not autonomous. You are not self employed. You are working for the Man (even if the Man is a twinkly eyed midwifery company manager). 

Secondly, Private Midwives / UKBC don't seem to have the same values as the IMUK midwives. Take for example their website. Under 'Birth Choices', they list as an option, 'Cord Blood Banking' in collaboration with a company called Future Health Biobank. Now, an IM would support you if you really wanted to do cord blood banking, because they support ALL choices. But they would never actively promote it, or take a financial cut from it as presumably UKBC are doing, because, as every IM will tell you, cord blood banking is almost impossible to do effectively without interfering with Optimal Cord Clamping. 

Did you know there's a brilliant new birth book coming out next month by a little known birth writer called Milli Hill?! She's given me her permission to share an exclusive extract from her book about Cord Blood Banking, in exchange for this shameless plug:

This extract from the Positive Birth Book is taken from a larger section on everything you need to know about Optimal Clamping:

What about cord blood banking?
Cord blood banking is big business. While there are some options to donate your baby’s cord blood, for example in the NHS, there are many more private companies who charge around £2,000 or more to collect and bank your baby’s cord blood, which they often describe as, ‘a waste product with life-saving potential’. However, you can’t do ‘optimal clamping’ and ‘cord blood banking’. So it’s worth considering whether you want to donate around a third of your baby’s blood volume, by having it banked for their own or anyone else’s possible future use. Although we can’t predict every scientific advance of the future, it’s thought that the chance that your own baby will need their banked cord blood before the age of 20 could be as little as 1 in 20,000. Also, should your child develop leukaemia, it’s extremely unlikely that his or her own cord blood will be appropriate for transplant. Essentially, so-called ‘cord blood’ is actually ‘your baby’s blood’. Perhaps the health benefits might be highest for your child if this blood goes straight into their body at birth?

I called Future Health Biobank and asked them what would happen if I wanted OCC but also wanted to bank my baby's cord blood. They said I would be able to wait 2 minutes before collecting, and whilst Private Midwives say they advise a wait is built in, they also admit that the longer you wait, the higher the risk of the sample failing. Let's just say this, if you had had cord blood banking promoted to you by the midwives you had trusted to hire, AND had paid around £2k for it, would you want to risk it not working out, or would you ditch the OCC and get that blood harvested PDQ?!

It's all a bit murky. This rival company, who complained about IMUK's insurance, and promote the utterly daft practice of cord blood banking, are also alleged to have a voluntary excess of £50k on their policy and to have been, until recent investment from a company on the Isle of Man, substantially in debt. How much of this is true, or who the new investors are, I'm yet to find out, but boy would I love to know.

I've asked the NMC if they plan to investigate the insurance arrangements of UKBC and they have told me that they, "do not currently have concerns about the indemnity arrangements of any other group of midwives."

In the meantime IMUK members cannot attend women in labour. There are pregnant women who are directly affected by this decision, and Birthrights have said that their actions, “appear designed to cause maximum disruption and damage to independent midwives and the women they care for,” adding that, “we do not believe that these are the actions of a responsible regulator.”

I would add that I feel this decision directly threatens the future birth experiences of every woman currently pregnant or yet to be pregnant in the UK today. Independent Midwives represent an alternative model of birth to anything else currently on offer. They believe in the power of women's bodies to birth without interference. They care for women in a completely different way to the service most get under the NHS, offering the kind of individualised care that has been shown by research to have better outcomes for safety and satisfaction across the board, and promoted by the recent maternity review as the gold standard to which the NHS should be aspiring.

And for now - they are...gone.

Please help save this option for UK women by taking the following action:

There is a comprehensive list of ways to get involved listed here on this site

They include...

Write to the NMC at (example letters here)

Sign a petition

or this one to the UK parliament

or this one on 38 degrees

Or all three!

Join this Facebook group

If you're tweeting, use the hashtag #savethemidwife

Here's a few pics from my two births with Independent Midwives.