Wednesday, 23 January 2013

NICU Mums and a Lack of Empathy

Something has happened to the people of Britain.  I don't remember it being this way when I was young, or even to such a large extent when I was embarking on adulthood.  But I notice it now, in every aspect of life, both professional and in communities. Jaded cynicism and a lack of empathy.

I know it isn't everyone.  It isn't me, and I like to think it probably isn't most of the people who read this blog.  Now, for some reason my American readership is larger than my UK one so I wonder if the same worrying trend is growing there too.  But here in England, Britain, the UK (take your pick) a collective negativity really seems to have taken hold.

I've talked in articles on here about the recession and austerity (you know how I feel about the coalition government) and I do think that being continually pitted against each other is a terrible thing.  Having to fight individual corners to protect what little we have has taken its toll and sped up the process over the past 2 years.  I've certainly commented on other blogs which have either reinforced this negativity, or mercifully railed against it (Miss Cisco).

As a relatively new mum I have been amazed at how we parents often judge each other.  I'm assured that it has always been this way, but as an idealist I tend to expect the rosy until I'm rudely awakened.  Should we gossip about each other and judge each others parental choices?  Of course not, but even us idealists have our catty moments and I shamefully hold my hand up to it on occasion.  Idealist, but not self-deluded saint.

But what really has shocked me of late is seeing how some mums and pregnant women have been treated by members of the medical profession.  I have heard of seriously ill mums-to-be, hospitalised with the pregnancy condition I suffered with being labeled 'drama queens'.  Of medical notes not being read and distressing histories having to be retold again and again.  And no apologies, no empathy, no "I'm so sorry".  Just arrogance and condescension with no softening of the harsh demeanour.  Surely some of these same people are parents themselves?

So, how do you find yourself in what is supposed to be the ultimate caring profession, not giving a damn?

I myself have been treated appallingly at the hands of nurses and midwives tasked with keeping me and my unborn baby safe - perhaps if I hadn't been neglected and snapped at when asking for a doctor I would have received the second steroid injection as I was supposed to, and my daughter wouldn't have endless chest infections through weak lungs - something that may stay with her for life.

And I found that the attitudes of some on the NNU when they knew my husband and I were under an immense amount of stress were no better.  Some, that is, others were brilliant and it would be unfair to tar all with the same mean brush.

But even on the cusp of 'graduation' after 11 weeks of NNU rollercoaster when I came to 'room-in' before finally taking her home, I met with the mean streak of one particular nurse.  I had been told to go upstairs to the labour ward for a meal.  A tired and worried breastfeeding mother, trying to do everything right - this is what I got:

"You want a meal? Well, WHO sent you?"

I had already explained the situation to her, that my daughter had been in SCBU for 11 weeks, that I was roomed in, breast feeding on demand, and had been sent to have some food.  I answered that it was the neonatal nurses downstairs.  I also knew that roomed-in mothers receiving meals was what always happened, having seen pretty much every other friend on the unit leave before us.

"Really? Well I'm not sure we have enough. I mean, nobody told us!  I wish they wouldn't just assume.  You'll have to wait until all the mums have had theirs and then we'll see if there's anything left for you".

Oh right, the mums who have just had their healthy term full-babies and will be getting to take them home in a few hours.  Great! Do I not even qualify as a proper mum?  I'm stuck at hospital as I have been been every day for the past 75 days, and I don't merit a meal?  Of course, these thoughts didn't fully occur at the time and although I was inwardly seething, I did that stupidly British thing of apologising for causing bother and telling her not to worry about it.  The Hugh Grant of the labour ward!  I think there may have been a slight edge to my tone as I turned on my heel though (sorry, Hugh) as she seemed to realise how harsh she'd been.  As I reached the door she was suddenly shouting after me that she was sure they'd be able to find me something, "perhaps a sandwich"

Well you know what? I bloody well hate sandwiches, and I wanted to tell her to stick her her begrudged offerings where the sun don't shine!  But instead I told her that it was fine and I'd get my own.  But others have suffered far worse than a mere denying of food.  Yet the attitude behind each crass insensitivity is the same.

My experience was not out of the ordinary.  Not from what I have read elsewhere and in the small online community of premature mums, of which I am a part.  From the rolling of the eyes at the mum who keeps hitting that buzzer at the NICU locked doors, to the belittling of the mum struggling to establish breastfeeding.  Unkindness that may sometimes simply be under-staffed and overworked nurses having a bad day.  But it's like a drip-drip effect, seeping into society.  Harsh words and careless neglect to the already stressed can have long term effects.  I read a statistic that up to 70% of mums who give birth to premature babies develop Post Traumatic Stress Disorder.  I have been there, and it is horrendous.  Yet the internal eye-rolling often starts again.  Now what? Your baby is safe.  You should be thankful.  Drama Queen... Family, friends, colleagues, doctors, nurses, fellow parents...

So again, I ask... where has the empathy gone?  Politicians and employers, blah.  But if it's disappearing from even the caring professions, then what does that say about where we are headed as a country?  Having said that, the work I do with the Grace Research Fund reassures me that there are some absolutely wonderful medical practitioners out there and they care deeply.  I hope they are still in the majority and that my fellow mums and I have been unlucky.

I would just really like to see a reversal in what I see as a cancer in our society - the growth of jaded cynicism and the inability to empathise with our neighbour.  Is it too late?  The idealist in me likes to think not.





19 comments:

  1. that was a fantastic blog. I was treated appallingly when i had my 29 weeker but you feel like you cant say anything as they were saving my son. its a I dont care what you do to me just please help my child. only looking back now seeing tbaf I wasnt in gbe same ward that I realise there was no need for the horrible treatment I got.

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    1. I'm so sorry you were treated terribly too. And yes, I think we all take that approach - never mind me, just save my child. But the child can still be taken care of while the parent is being treated with common courtesy.

      Thank you for commenting.

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  2. Another brilliant blog C.

    I really can't believe how you were treated. I'd like to think if I'd been you I would have told her where to shove her sandwich but, like you, I would have done the Hugh Grant thing - or ended up apologising to her and then kicking myself afterwards. I hate to hear stories of how women were treated before, during and after birth. Being pregnant and giving birth is one of the most scary (and amazing) and emotional things that a woman can do and how some women are being treated is just outrageous.

    I understand that there are increasing pressures on the health service but you would expect empathy to be abundant in such a profession.

    You are right, it is seeping into society. People just don't seem to have the time for others anymore either. Only at the end of last year I was carrying 3 bags into the charity shop where I work and one of the bag split as I crossed the road. Stuff everywhere. 3 people just walked passed me without offering to help. 3...THREE!

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    1. Thanks H!

      It amazing looking back at how I was treated, but I was still a little bit like a deer in headlights back then. All of this had happened to us, and I was just trying to keep up. I wasn't processing anything. I very rarely had any fight - certainly not for myself, only when I needed to step up for my baby. And I think a lot of women under similar circumstances find that.

      You're certainly right that empathy SHOULD be in abundance in the health service, and I wonder if it is simply reflecting society that there are those working within that seem hardened to what patients are going through. Maybe it's a case of they have seen it all and it ceases to have an emotional impact on them. Not that we want them crying with us necessarily, just to be treated with courtesy and a little kindness is enough. And anyone can do that.

      And that's rubbish about the lack of help on the street! Where is the community spirit? I think there needs to be a new help thy neighbour movement!!! x

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  3. I was treated like a pain in the backside when I went in to labour with my 24weeker, by midwives and doctors on the labour ward. I was in great pain and terrified I would lose my son. Eyes were rolling as I was screaming in agony. I was also denied pain relief for most of my Labour (as apparently I wasn't in Labour!) I was left with PTSD. There was little care and compassion and the whole experience has left me scarred. Thankfully the nnu were a different kettle of fish...apart from the older nursery nurses who didn't think I deserved a room to establish breastfeeding before I left for home!

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    1. It sounds like you and I have had similar experiences, and I'm so sorry. I too was denied pain relief for most of my labour, which only made it more terrifying because you think, if I'm in this much pain and they're telling me the baby is not coming, then what the hell is wrong? It's disempowering and disgraceful.

      But like you I 'mostly' had a reasonable NNU experience. Thanks for commenting.

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    2. http://mommy-beadzoid.blogspot.co.uk/2011/01/my-birth-trauma-story.html

      Incidentally, this is my birth story. I wonder if it is similar to yours!

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  4. Over worked staff, not enough staff, bad communication = bad patient care.

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    1. Definitely. I don't think it's the whole reason - but it's more and more an issue because the cuts ARE resulting in frontline losses, no matter what they say. Reports by undertaken by Bliss and others back this up.

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  5. I liked this post, I've never read one which addressed so specifically the treatment of a prem baby Mum. So much focus is on the baby, forgetting that if the mother is in a damaged emotional state she is unable to function well.
    For all the ups and downs on our 28 weeker's journey, I will never forget for as long as I live being told by an experienced SCBU nurse shortly after being told my son had suffered a large bleed in his brain that if I didn't stop fussing I would make my husband 'go bald' and a nervous wreck of my child. The following apology just compounded my awkward feelings in a totally alien situation. And then being asked if I would be 'totally devastated' to fail to establish breastfeeding on the 7th day rooming in after 8 weeks on the unit. Still hurts now, 3 years and a healthy sibling further on.
    Attitudes like that are nothing to do with resources, it is sheer emotional intelligence ignorance.

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    1. Sheer emotional ignorance - absolutely. There really is no excuse for the comments you received. Crass and damaging.

      I still sometimes feel guilty for sometimes focusing on what happened to me when my life wasn't the one in danger (though it could have been at times, thanks to lack of care), but in the end you have to. Whether or not we develop PTSD, those feelings and thoughts need dealing with eventually. It would be ideal to do so as we are having them, but we all know about autopilot and channeling our energy onto what is happening with our poorly child.

      Medical professionals I think need a bit more training on how to deal with the parent to minimise any negative impact they could potentially have. they should see their duty of care to the parent, as well as the patient.

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  6. Love this blog and thank you for highlighting the annoying and arrogant behaviour that I have encountered. I am so sorry that you too have had dealings with medical staff who shouldn't be in their line of work and I am going to write a very strongly worded complaint letter about my experiences as I feel it's not fair for others to have to "put up" with these attitudes and would recommend going forward that everyone does the same.

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    1. Thanks Niki. Your story has touched a lot of people, including myself and I have been feeling genuinely angered and saddened at the lack of care and understanding that you have received. What happened with the sonographer, on top of everything else, words fail me... You are a strong lady and you're absolutely right that women should complain in the strongest way possible at ill treatment received. It's the only way it will change.

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  7. These are the kind of horror stories that give state health care elsewhere in the world a bad name! It's sadly all too common though... I am thankful that I don't have any awful stories of my own but I have many friends who suffered in the aftermath of giving birth from the sheer neglect of hospital staff and it's so wrong. I really wish something would change so it doesn't continue being the almost norm for so many women.

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    1. It is, and it's sad. The Olympics opening ceremony saw the NHS celebrated - and rightly so. And while I do think it is far preferable to systems based on having to have expensive medical insurance, it is far from perfect. In this respect at least - the treatment of women on labour wards - something drastically needs to change.

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  8. There's like two sides to this: nurses for example are almost always labelled 'angels' on media coverage, at least in Ireland, and sometimes they are. But sometimes those in the so-called caring professions don't actually care, but it's like you can't say that. Stories of mistreatment and lack of sympathy are whispered in corners, and lots of people are whispering. Well done for raising this issue xx

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    1. Thank you! A very astute observation in terms of media coverage - I would say it is generally the same here. And while some absolutely deserve recognition as being wonderful, the opposite can be said of others. And it's not just in women's services - we have seen awful stories concerning other vulnerable patient groups.

      I know no one wants to see an over-complaining litigious culture emerging any more than it already has, but in these types of cases action is more than merited, indeed necessary. xx

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  9. A little kindness and respect goes such a long way, but it seems to be less and less common in our 'Everyman for themselves' society. Such a shame. Thank you for the mention.

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    1. Exactly. And that's why I loved your post. Glad I'm not the only one who seems to have noticed x

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