25 Comments
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Aileen's avatar

So agree with all of this. I’m sorry for your loss and the experience you’ve had. It’s almost worse to have them all congratulate themselves on a step forward when things are so far removed in reality - no-one on the front line seems even remotely aware of any of these headlines or reports. I’m in scotland so we’re not covered by the recommendation but I’ve been told by Tommys that Scottish government are already engaged and on board with the graded model of care but that’s not adding up with my experience. I have had three miscarriages and am still fighting with my GP for a referral to a recurrent miscarriage clinic a I want to try to avoid this happening again. My surgery seem to know nothing about any sort of commitment or what tests should or could be done to investigate. I’m not sure they even know where to actually send me so any referrals keep getting lost (now 8 months since I started asking) and like you I feel so easy to forget about - like what we’re experiencing isn’t that important and not any sort of emergency. It’s this that so affects my mental well-being and it’s so tough. X

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Jennie Agg's avatar

It does feel slightly unhinged, doesn't it? I'm so sorry you're having such a battle to get a referral. In the interim, there might be some basic tests you could ask your GP to run (Tommy's might have a list somewhere - thyroid panel, vitamin D etc?) The gap between what is supposed to happen and what actually happens is a real problem - my GP refused to prescribe progesterone this time, too, even with a letter from my previous consultant detailing why I took it/what dose etc. But that might be a story for another day! Thank you for messaging. xx

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Aileen's avatar

That’s terrible Jennie, how frustrating! If only they’d all just work together. We battle on…

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Anon's avatar

We had to fight our GP for a referral to Professor Quenby's clinic at University Hospital Coventry & Warwickshire, despite reading in Jennie's book that they accepted all referrals after a single loss. This point was confirmed when we reached out to Quenby's clinic directly, who told us in no uncertain terms that our GP was entirely incorrect for suggesting that a referral wasn't possible. They also then provided us with exacting referral instructions to pass on to our GP. This was our first interaction with this incredible clinic, who may well be a lone beacon of hope in an otherwise broken system. If you haven't already, I would get in touch with them – and, simultaneously, keep pushing with your GP.

p.s. Jennie – your final line says it all...

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Aileen's avatar

Thanks - I would love to see professor quenby and initially thought I’d get somewhere with that, but I wouldn’t even bother if you’re in Scotland like me. GP did send the referral and Coventry received it (so happy at the time) but wouldn’t accept without funding from my health board. Gp says they don’t provide this - it it’s my local health board and there is nothing they can do as it’s separate to their systems. (Massive disappointment and many tears shed) I have no way to contact the health board myself but have been told by citizens advice and have had numerous online forums confirm that Greater Glasgow and Clyde heath board like most in scotland won’t provide the funding for this. I honestly can’t tell you how upsetting this was - not least because it was my obstetrician who suggested I look into quenbys clinic - but she did say at the time she couldn’t refer me as it was against hospital policy and to contact Tommys and my GP. Tommys website says that funding should be provided by your GP in scotland. But they are not all all following the same system.

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Anon's avatar

You should be able to request a referral through your local EPAS unit, if you rang and ask they may be able to help. Or your GP should be able to send to the local gynaecology department. I’m a GP in Scotland (and have personal experience of accessing this clinic). You should be able to request again through your GP. Sorry the journey has been long to get there.

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Monika Kosmákova 🇨🇦🏔️'s avatar

Jennie, I hesitate to “love” this article. Consider my heart on it as one with a bandage wrapped around it ❤️‍🩹 I’m so sorry for your loss, and frustrated to hear that care is getting worse, not better. Your work is powerful and important. I’m listening to your audiobook now. Much gratitude, and strength and healing to you.

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Jennie Agg's avatar

Thank you so much - on all counts. ❤️

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Jennifer B's avatar

Gosh I’m just so sorry Jennie. The way you are treated in the process and aftermath is always remembered and I am sorry your experience, like so many others was not as good as it should have been. Sending so much love xxx

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Jennie Agg's avatar

Thank you - it was all, at least, very calm and non-dramatic, unlike previous occasions. But this is the first time there's been this sense of medical staff really wanting to help, wishing they could do more, but having their hands tied. xxx

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Louise F's avatar

I am so so sorry for your loss, Jennie. What a beautifully written article, amid the pain I know you will be feeling. Your story resonates so much with me - I am lucky enough to have one daughter, but I've had three miscarriages since her, the most recent in June this year. It is agony and we need all the support we can get - it is a shame that it's still a total geographical lottery. Sending you lots of love and well wishes.

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Jessica Martin's avatar

I’m so very sorry for your loss. My heart aches for you. The world can do better.

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Hannah's avatar

I am so sorry for your loss Jennie, and to hear of your experiences of miscarriage support (or lack thereof). Please know that what you and others have done in this area is so helpful to so many. We can only hope that the recommendations are taken on board in time. You are so brave for trying again - miscarriage once you have a child comes with its own unique challenges. Thinking of you and hoping your boys are giving you lots of love to help you through this period xxx

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Emma's avatar

I'm so, so sorry for your loss. Thank you for sharing this. I'm horrified to hear how bad your experience was this time (from the wait to be seen, to being forgotten in the room, to the lack of test results or acknowledgement) - my last experience of miscarriage was during the pandemic, when things were really bad, but I hoped it was only temporary, because of the emergency measures. It's so awful to hear that things have actually got worse since then. And it is so dispiriting that there is no recognition of the intensity of the pain and trauma (and intensity of contractions and physical symptoms) involved in the 'waiting' for a week before being seen. I really hope the promised funding actually is allocated and things change. So sorry that you went through this.

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Caitlin Barnett's avatar

I’m so sorry for your loss and that you had to experience such disappointingly rubbish care. I’ve been wondering recently whether my history of recurrent miscarriage is the reason I’m not really contemplating having another baby and having read this, it suddenly felt very real, that I couldn’t bear to have to go through it all again and to know nothing had improved. I hope you are feeling somewhat on the road to recovery and taking it easy. Thank you for everything that you write - you always articulate it so accurately, for me. X

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Sophiex90's avatar

So sorry Jennie. Your experience of care particularly this time around is not dissimilar to ours. My heart breaks for you. I had hoped my experience wasn’t reflective of the general standard and I had hope for change. But implementing this in reality is still so far away from the proposals. The trauma of loss is one thing, but I have found the trauma is also rooted in how it’s all dealt with. Sending hugs x

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Francesca's avatar

I'm so sorry for your loss and experience of poor care Jennie. When you wrote previously about trying again I hoped it would be different this time round but life can be so cruel. Thank you for all you do to raise awareness of miscarriage and women's healthcare in general. Your book made me feel seen but also educated me about women's health. Thinking of you and your family xx

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The Miscarriage Therapist's avatar

I’m so sorry for your loss ❤️ The lack of empathic care, thoughtful care, thorough medical care, is absurd. I so want to have hope that things will improve, but it does feel like the more times we experience a pregnancy loss, the less care we actually receive. I only hope all of our stories can one day bring the pieces in this report to light.

Thinking of you and your family

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Sharon's avatar

Ohhh Jennie.. you write in such a careful, sensitive and loving way but god, how *do* you carry so much care when there is so little instrumentally solid support for you from the only institution available? My heart crimped when l kept reading on and it goes out to you both, all the way from Australia ❤️ Thank you xxx

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Grace's avatar

So sorry to hear this. I first read your work in 2020, when I was in hospital for a TFMR. Your words have helped me hugely over the last few years. Completely agree with everything you have raised here. X

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Amy Abrahams's avatar

Jennie, I am so very, very sorry to read this. And as ever, I am in awe of the way you write about it. I really do feel like the impact of my first miscarriage (the two surgeries it involved to 'resolve' it, and the lack of follow-up care in terms of mental health support, acknowledgment of anxiety/fear) played a part in how long I felt deeply traumatised by it - the consequences of which spread into so many other aspects of life. I want to feel hopeful about that review - but I am sorry that you were unable to receive the treatment you needed, deserved, especially give your past experiences. There seems to be such a disconnect in understanding how important the care is and how that affects the way people can recover... As you say, it's not about the practitioners themselves, there is kindness there, but some higher-level dismissal of how painful (physically/emotionally) miscarriage can be.

However. The main thing is right now - I hope you are doing as OK as can be. I hope you are resting and doing what you need to do to heal and find strength. Thank you for always championing this. But also, look after yourself and your feelings. Sending love. xx

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Claire M's avatar

So sorry to read this Jenny. Our stories are frightfully similar, to the point my friend asked if I had written the guardian article from a few years back. I am so sad to read that nothing has changed, and in fact gotten worse. I was fortunate that my GP put me on repeat prescriptions for progesterone so that I could request it easily and early based on my previous consultant letter. Perhaps that is an Avenue to try? Or maybe just change GP to someone who will. I count myself very fortunate that I have a ‘diagnosis’ as such as it makes this whole quagmire so much easier to handle. Take care of yourself xx

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Katie's avatar

Oh my goodness, I am so sorry. This sounds exactly like what happened with our first pregnancy, although my levels didn't change as fast they should have done so I was seen by a consultant in case it was ectopic. Then with when I was pregnant again, I had some bleeding and they couldn't fit me in for a scan and I was told just to wait until our 12 week scan, which was luckily only a few days away, and even more luckily everything was fine. But it's so scary. I hope you and your family are all doing as ok as possible - sending lots of love.

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