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"A Zero Support Miscarriage"

About: Hillingdon Hospital / Maternity Northwick Park Hospital / Maternity

(as the patient),

I'm so sorry in advance for anyone reading this long story but I've sat here with quite a lot of anger and upset due to the complete lack of aftercare provided by anyone following the miscarriage I had and this is the first platform I could (relatively anonymously) open up with those that will listen and might change things for the better.

I found out I was pregnant for the first time (after nearly a year trying) in March 2020 - the GP (@ The Devonshire Lodge Practice) and EPU (@ Hillingdon Hospital) were really helpful, positive and even excited for us which was lovely.

I was having a lovely pregnancy and whilst Covid-19 meant I couldn't share the few antenatal appts I had with my husband, it was also a lovely shield for our exciting little secret and at no point did anywhere make me feel unsafe (appts were done over the phone where possible and everywhere felt clean)- again very positive and no complaints.

Unfortunately, I started to miscarry at 11 1/2 weeks (painfully just before our first year anniversary and plans to announce our pregnancy as you'd expect).  It started with a little bleeding on the tissue one afternoon after wiping.  I called my GP for a bit of calm advice about what to look out for and he said he'd rearrange my scan for later on in the week rather than waiting for the booked 12-week scan.

I managed to get an hour's sleep that evening but woke at 11pm with severe cramps and heavy bleeding.  I am quite a practical person, so logic told me I was miscarrying.  From the early advice I'd received at my first GP appt, I knew my best bet would be to ride it through at home.  After 4 hours on the toilet losing a heavy amount of tissue and blood, I called 111 just for a bit of further advice.  I didn't want to go to A&E but didn't want to be ignorant/ put myself in danger - hope that makes sense.

111 called the paramedics to come and check on me - they were both brilliant.  Wore masks, talked to me and checked my stats whilst I was sat bottom naked on the toilet (it was just easier for me this way) and decided my stats were too high and took me to the closest A&E at Northwick Park.  After I'd woken him, my husband was advised to wait at home until I called to be picked up due to Covid-19 restrictions.  The paramedics gave me gas and air in the ambulance to help with the severe cramps.

A&E was different - I arrived just as they were changing shifts - the first team were lovely and chatty, encouraging me to remain positive until I knew for sure it was a miscarriage (although we knew it was this) and that they'd get me seen at the gynaecology unit.  After the shift change though, doctors and nurses kept coming into my 'room' without speaking to me or even looking at me sometimes.  Left me in pain with tubes sticking out of me and no update for over an hour.  I finally managed to get an Ibuprofen (so they'd assumed I'd miscarried) and could leave.

Northwick Park arranged for me to have a scan on the Friday but my GP had managed to get me a scan at Hillingdon for the same day (or the next day from when we had spoken) so I chose to go in as soon as I could.  Again, on my own, I went to a department (thankfully not antenatal/ maternity) for them to take blood and have an internal scan.  The nurse was kind but said very little - gently touched my knee to say sorry she couldn't see anything but a small bit of tissue which I was told should pass soon.  I was asked to come back in two days to have another blood test to check my HCG levels were dropping.  Apart from that - nothing.

I don't really have any complaints over the staff themselves throughout the experience - I think everyone said and did what they thought was best and it was all appreciated.  What I was shocked at was that there was no aftercare - no-one had a conversation with me about what had happened, how common it was (even if it hurts to hear), how clever your body is, what will happen next, when my next period will be, how long until I should start trying again if that's what I want, who to contact if I have any questions or just need someone to talk to about it.

I count myself very lucky; I have an incredibly loving and supportive husband and if I had wanted to at the time, I have a good support network or friends and family who I could turn to if I needed, I am strong minded (not to say I wasn't distraught at what had happened but I am good at taking care of myself) and I know where to look for information if I needed to so luckily I am relatively okay considering.

However, the internet is still full of opinion and it can be very contradictory and confusing, there are people out there without a support network and/ or the know how on where to find support, or just really could have done with a professional talking to them and checking in making sure they are okay physically/ emotionally.  We're also full of unfamiliar emotions that may completely alter our normal way of thinking/ feeling.

It's been a little under a month since the first day of my miscarriage and I know I am not 100% okay.  Apart from a delightful call from the hospital wanting to talk to me on my pregnancy (oops didn't get the message), no-one has called me at all.  Not even to check I passed the tissue or even to follow up that a pregnancy test confirms I am no longer pregnant (another joy I had to endure twice as the first said I was still pregnant - damn the sensitive modern tests) because I haven't had the emotional energy to call up someone just to tell them that on the phone.

I since found out another friend of mine also miscarried this year and she's had the same experience give or take.  However, another friend who had had an abortion when she was younger (8 years ago) pointed out the irony that when making the choice, she was given a ton of pamphlets and support!  I've even found a report done on the lack of support felt across the UK following a miscarriage and that was done in 2013 - why has nothing changed?  It infuriates me and is probably the scariest part of wanting to try again - not that I might miscarry (although this is a natural feeling and will probably be on my mind the whole of the next pregnancy despite my aim to be positive) but that if I do and I'm further along that there will be no support again.

Anyway, as many people say, if this post helps one other person feel even a touch bit comforted that they weren't the only one then I'm so sorry you had to go through the same thing but hope for all of us that something will change (as well as that next time we'll carry to full term).

My final note as it's rightly a big topic of discussion, for full discretion I am an early 30 year old, white British woman who classes her sexual orientation as straight (hence the husband reference) and would probably now class herself as middle classed (although I certainly wasn't born that way).  Particularly coming from a multi-race family and living in a multi-ethnic area, I recognise I will have certain privileges I'm probably not even aware of, but I have to say that the biggest privilege was that throughout my experience I was treated by a diverse NHS team who did the best they could (minus the A&E team as noted above) and who I will be extremely grateful for forever.  This is not a statement about race but again might assist anyone, who can help make a difference, have as much information without having to make assumptions.

My point is that my anger is not aimed at any individual but for what seems to be the system and planned/ not planned aftercare for any woman who has the unfortunate experience of a miscarriage.

Take care x

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Responses

Response from Anjali Patel, Patient Experience Manager, London North West University Healthcare NHS Trust 3 years ago
Anjali Patel
Patient Experience Manager,
London North West University Healthcare NHS Trust
Submitted on 25/06/2020 at 13:59
Published on Care Opinion at 15:13


Dear Madam,

Firstly, I would like to apologise for the time it has taken to respond to your post. I have been liasing with the relevant departments to better understand what should have been in place for you following your experience.

I was deeply saddened to read your story, as were the relevant departments that I have shared your story with. I am so sorry that you went through this without the level of support that should have been available to you.

We as a Trust would very much like to have a better understanding of your experience. This is so that we can signpost you where possible, but also to learn from your experience so that others in a similar situation do not have to go through it in the same way that you have done. Unfortunately we cannot identify you from your post, or how to contact you.

Please can I ask that you contact the Patient Experience Team on 020 8869 3638 and ask for me personally. If I am unavailable, the team will take a message and I will definitely call you back.

Our matron for gynaecology is happy to speak with you and/or your husband should you wish to discuss your experience or just have an informal chat.

I am sorry that this is so late in the day, but if you have not already come across them, the Miscarriage Association are very supportive and offer a range of leaflets and have a helpline. the website is: https://www.miscarriageassociation.org.uk

Again, please accept our sincerest condolences and apologies.

We look forward to hearing from you.

Best wishes

Anjali Patel

Patient Experience Manager

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