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"Learning for the NHS from my experience of miscarriage"

About: St John's Hospital / Gynaecology

(as a service user),

Working within the NHS I am aware of and understand the limitations within our healthcare system and that the staff do their best with the limited resources that they have. However, I can't help but feel incredibly let down.

For five months me and my husband had been trying to start a family. A shared dream that meant everything to us. The day that we saw that positive symbol on the at home pregnancy test it was all our hopes and wishes come true. With the greatest excitement I started the process of booking our first midwife appointment.

Just five short days after that initial positive test I started to bleed. In a state of absolute distress and desperation I phoned my GP surgery which was still open but I was immediately turned away by the secretary and asked to phone NHS 24.

After being triaged by a nurse they gave advice to phone St John's Hospital Maternity department, who took my details but advised me that the Early Pregnancy Unit (EPU) was closed and that I would receive a phone call from them the following morning.

In the meantime I was to put on a sanitary pad and if I experienced any worsening symptoms I was to attend A&E. I was left to face a traumatic and sleepless night where I continued to bleed, knowing that I was likely losing our baby.

Thankfully we were seen promptly the next morning by the EPU. Sleep deprived and in state of shock and distress I went from getting ultrasound scan where they told me that they couldn't find anything, into seeing the specialist nurse in the EPU. Within the room was also a trainee doctor and another nurse.

The first question I was asked was 'what did they tell you from the scan?', something I thought they should have already have been informed of and that I shouldn't have had to say the heartbreaking words 'they couldn't find an embryo'.

It was then called into question by the nurse whether I had actually been pregnant in the first instance. Which after reiterating that we did 4 home pregnancy tests to confirm it (something I had already informed them of) they did concede that a false positive was unlikely.

A blood test was taken to determine my Human Chorionic Gonadotropin (hCG) levels and I was told that I would be phoned later that day to advise of the results and to make a plan from there. Within the same conversation I was already being offered leaflets about miscarriage, a memory box and given platitudes that miscarriage is 'common', that it's 'just one of those things' and that people could go on to have healthy pregnancies afterwards. I didn't even have the results of the first blood test to confirm the pregnancy never mind the following blood test 48hrs after to confirm I had experienced miscarriage. It wasn't the correct time to be presenting me with all of this information and I was in no state psychologically to receive it.

After having it confirmed from the bloods that I had been 3-4 weeks pregnant, I waited the 48hrs for a further blood test, to confirm that my hCG levels had dropped and that the pregnancy was over. During that time I went through the trauma of continuing to bleed and seeing what I believe to have been the embryo when it left my body. Feeling isolated and alone with no idea how to cope with this. It was apparent from the cheerful manner of the member of staff taking my second set of bloods, that they had no idea that I was there to confirm that I had experienced a miscarriage.

It was over the phone that I then had the confirmation that my hCG levels were no longer detectable and that I had experienced a complete miscarriage. I didn't have the opportunity to hear those results or ask questions face-to-face. Instead it was just a voice over the phone and what felt like a very empty consolation that they would try to get me in for an early scan if I did get pregnant again.

Over that course of the time period after I miscarried I received two letters, one for a midwife appointment and the other for the obstetrician. I was distressed enough by getting these, never mind the fact I would now have to phone these services to cancel the appointments and explain that I had a miscarriage.

For the NHS a miscarriage was treated as something common and routine. It was seen as acceptable practice to confirm a miscarriage in such an impersonable way over a phone call, without the compassion and respect for our loss by being told these results in person. But for me and my husband, that embryo was our baby no matter how many weeks of development and we had been told over the phone that we had lost our baby.

Our first experience of pregnancy ended in inconsolable heartbreak and grief, which we will have to find a way live with as nothing will ever erase it. We are left terrified that with any future pregnancies this could all happen again, as we were offered no investigations after the miscarriage to determine why this occurred (as they only test after 3 miscarriages) or any way to prevent it from happening again.

I am sharing my story so hopefully no-one else has to experience what I have. All that was needed was another face-to-face appointment to be provided to give the results of the 2nd blood test confirming the miscarriage. It would have been a more compassionate way to deliver the results, offer the opportunity for us to ask questions, be provided with information about miscarriage charities/services and the option of a memory box at the correct time.

Cancellation of pregnancy-related appointments should also be triggered after a miscarriage, so letters aren't received when someone is going through the grieving process.

Do you have a similar story to tell? Tell your story & make a difference ››

Responses

Response from Claire Withnell, Patient Experience Officer, Patient Experience Team, NHS Lothian 4 months ago
Claire Withnell
Patient Experience Officer, Patient Experience Team,
NHS Lothian
Submitted on 24/12/2024 at 13:32
Published on Care Opinion at 13:32


picture of Claire Withnell

Dear Miscarriageadvocate,

I am so sorry to hear that you recently experienced a miscarriage, this must be an incredibly hard time for you. I would like to thank you for taking the time to share your feedback with us however and giving us the opportunity to learn from this.

I would like to assure you that your comments have been shared with the management team within St Johns Gynaecology to allow them to respond.

Once again, I am really sorry that you have had to go through this. I wish you all the best going forward.

Best wishes,

Claire

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Response from Sue Shade, Clinical Midwifery Manager, Maternity, St. John's Hospital, NHS Lothian 4 months ago
Sue Shade
Clinical Midwifery Manager, Maternity, St. John's Hospital,
NHS Lothian
Submitted on 24/12/2024 at 17:34
Published on Care Opinion on 27/12/2024 at 09:45


picture of Sue Shade

We are extremely sorry to hear about the distressing experience you have had and offer our deepest condolences for your loss. We recognise the courage you have shown in sharing such a personal journey and we sincerely apologise for any additional distress caused during this difficult time. The Early Pregnancy Unit (EPU) staff within St John's Hospital work continuously to improve their processes and communication to better support the patient group within their care, especially during such sensitive circumstances.

Your feedback has been shared directly with the EPU staff and we recognise that this will be invaluable in helping them identify areas for improvement, and I assure you that your concerns will be addressed.

We apologise that you were left feeling let down by your experience and that a face-to-face appointment would have offered you and your husband care which was more compassionate.

We would encourage you to please reach out to our EPU team for any assistance you need moving forward so that we can offer our ongoing support.

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Update posted by Miscarriageadvocate (a service user)

Hello Claire,

Thank you for your kind response. I would greatly appreciate if you could advise the Gynaecology Department of the following:

I would just like to clarify that my story isn't a criticism of any of the NHS staff we encountered. We were treated with professionalism at all times. Correct guidelines were also followed as I'm aware that referral for investigation occurs only after you have had 3 early miscarriages (recurrent miscarriage), given that recurrent miscarriage is uncommon and only affects around 1 in 100 women.

However, behind those statistics are the individuals that are directly affected. I hope that my first-person account gives a different perspective on the care provided by the NHS for miscarriage. Since my bleeding started it was approx. 16hrs until I saw a healthcare professional and investigations were commenced. I can't describe the level of distress and anguish during those long hours we waited and then the further time period until we had the confirmation of the 2nd set of bloods that I had experienced a miscarriage.

The loss experienced through miscarriage shouldn't be minimised or medicalised. As highlighted in my story, small changes within healthcare practice such as information at the right time and the opportunity for a face-to-face to receive the confirmation of the miscarriage, would have made us feel like our loss was acknowledged and that we were treated with due sensitivity, empathy and compassion.

Also by having a more efficient system of cancelling and preventing the provision midwife and obstetrician appointment letters after miscarriage or the EPU staff informing services users that letters may have already been mailed, however, no actions will be required from the service user as these will be automatically cancelled on the system.

Response from Louise Davies, Patient Experience Officer, Patient Experience Team, NHS Lothian 4 months ago
Louise Davies
Patient Experience Officer, Patient Experience Team,
NHS Lothian
Submitted on 27/12/2024 at 12:27
Published on Care Opinion at 12:27


picture of Louise Davies

Dear Miscarriageadvocate

Thank you for your reply. I note that Sue Shade from our Maternity Team has responded, but I will make sure your further comments are also shared with them. As per Sue's message, your feedback is invaluable, and we really appreciate you taking the time to share this with us so we can look into making improvements.

Thanks again

Louise

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