So upset/ angry after booking appt

[Robs20]

Need a rant!!
Today I had my booking appt. Dd1 died at the start of this year - she had an undiagnosed genetic condition and had very complex health issues. She spent 4 months in nicu after birth.
With this pregnancy I had an early private scan 2 weeks ago and know I am pregnant with twins. For both of these reasons I know I should be consultant led.
Today’s midwife told me I can’t see a consultant until 34 weeks and I won’t have another midwife appt until 19 weeks. I’m not eligible for any extra scans.
I feel so unsupported and not sure what to do now. I requested to see a consultant sooner and she said they will think its a waste of time. I also asked if I could see a bereavement midwife (I know they have them at this hospital as I follow one on Instagram!) and she seemed to think it was a strange request.
Should I try and transfer to another hospital? Complain to this hospital? As you can imagine pregnancy after loss is super stressful!

This sounds horrific! You poor woman.

I think you would definitely be consultant led - this was picked up at my second midwife appointment at 16 (?) weeks.

This MW sounds pretty horrible. I think i'd call the hospital and speak to someone else.

Yip, complain. She sounds utterly uncaring and you need the extra support

When I had my twins, it was midwife lead all the way through until 34 weeks if no
Complications. I had my scan at 12 weeks and then 19

You poor woman. I don’t know what to do but hopefully my comment will bump this thread. But whatever everyone advises please push hard for this! Maybe get someone to act on your behalf so you don’t have the stress. But you should NOT be being treated this way!

Sorry that sent before I had finished.
Before 12 weeks they can not do much but when you have further scans they will be able to offer more. Was your daughters condition genetic?.
How old was your daughter when she passed away.
I am so sorry for your loss xxx

I’m glad to hear its not just my pregnancy hormones making me crazy and unreasonable!
I am now thinking I might try to transfer to the hospital where dd1 was treated (both are level 3 London hospitals so should provide equal care). I didn’t want to go there as it will be emotionally very difficult- the last time I was there I was holding my baby in the mortuary BUT they know us so well so might be better....

@Teenangels she was 13 months. It was probably genetic but don’t know if inherited or spontaneous (random)...we’ve had the most extensive genetic testing possible and they’ve found nothing. Whatever it was, there are no other known cases in the world!

They should be able to see some signs of the condition on a 12/16 week scan although it won’t be 100% confirmed, this is why I wanted to see a consultant asap.

Kindly OP being consultant led won't guarantee you any more scans. Nor more appointments until much nearer the due date. 34 weeks is late for your first appointment but if that's normal in your trust then take it.

That doesn't sound right at all. Your care should definitely be consulted led. Could you contact the midwifery team to check what your midwife said or possibly contact the bereavement midwife directly. In contrast I'm pregnant after my daughter was stillborn in January and I see the bereavement midwife and a specialist consultant and have extra monitoring and scans. I wish you the best for your pregnancy.

Being consultant led generally does result in more appointments. I had my first consultant appointment at around 16 weeks and my situation was not especially complex (pre eclampsia, emergency section in first pregnancy). I then had several further consultant appointments alongside all the standard midwifery appointments.

I would contact the supervisor for midwives and see if this is their standard approach of if someone has dropped a ball. I'd also contact your old hospital to see if they can give you an idea how they would deal with things. Then you can make an informed choice.

I'm so sorry about the loss of your daughter. I wish you an uneventful pregnancy.

100% write to PALS. I was consultant led for much much less than you have been through. They’ll sort this out for you

I would contact the supervisor for midwives

Just to say that this is best done via PALS. I had a meeting with the head of the department regarding the failures during my second pregnancy. If they know you know how to leave a paper trail, they pay more attention. That’s why email is best also.

@Teachermaths the reason I need to see a consultant sooner is to make a decision about whether to continue if it is likely these babies have the same condition (and this would be determined by in-depth scans). I can’t go through the pain of losing another child (or two) so we may choose to tfmr.

Thank you for the suggestions. I will go through pals in the first instance!

I would contact the hospital and ask to be seen by another midwife before considering changing hospitals. She should be able to sort out the correct pathway of care for you, if you still feel at that point that you’re not receiving adequate care, then ask to be transferred to the other hospital.

What you have been advised is definitely wrong, you should be receiving consultant lead care for a twin pregnancy, and certainly in the trust I work in, aside from the twin pregnancy, you’d be referred in at least for a consultant opinion regarding your previous child’s condition.
Where I work you are scanned much more regularly for multiples, and I would be very surprised if this is different elsewhere. Being left till 34 weeks for a consultant appointment as a twin pregnancy is definitely wrong!

Additionally if you can find the WHO guidelines/pathway for the screening for the condition, and quote what they should be doing and haven’t, that makes them hurry things up also.

I would contact the supervisor for midwives and see if this is their standard approach of if someone has dropped a ball

Sadly SOM do not exist anymore, else this would definitely be the best advice. PALS will help, but simply speaking to a different midwife should have this rectified easily.

However, if you feel a complaint is necessary (which you’d be well within your rights to do so), PALS will definitely help with that.

Could you call the consultant that led your daughter’s care and ask for his/her advice?

I'm sorry for your loss.
Re the midwife, you should be having an appointment at 16 weeks with either a midwife or a consultant. Where I am I'v actually had to ring a central switch board for midwife appointments and book them rather than them being booked at the end of the appointment as they are when I see my consultant so it could be you will have to do the same. Having said that I suspect that as soon as you have your nhs 12 week scan and they see it's twins they will refer you to the consultant for 16 weeks, that's when I was referred.

I had a baby with a genetic condition that led him to pass away soon after death. In our case we know it’s inherited somehow.

I’m under normal care plus Fetal medicine which gives me extra scans( had already a baby after we had our other baby pass away). You should be offered the invasive tests also if you wish too. We had a few scans with Fetal medicine then we were discharged because baby looked fine.

We will have the same amount of care this time around too.

We’re at BWH ( Birmingham)

Soon after birth I meant.

@mge that is a good idea. Will get DH to do it (they still speak fairly regularly and this specific dr is known to scare the crap out of me!)

@Monique007 I’m sorry that you’ve gone through this too. Can I ask when you started seeing fetal medicine/ how regularly you saw them?

My DD has a genetic condition and we can have genetic testing through genetics. I got a referral to them from the GP. You get to speak to a genetics counsellor and get all the support you are definitely lacking from that midwife.

So sorry about the loss of your daughter.

Have sent you a pm