To demand blood tests...and maybe a new midwife?

[InsanelyPregnantAndSore]

Ok so maybe not demand but...

I’m 32 weeks pregnant.
I had a liver issue in my previous pregnancy which wasn’t picked up on quickly but was a big danger to baby (can cause stillbirth).
It has a high likelihood of reoccurrence, I’ve been ok so far but this is the stage its most likely to reoccur.

Here is my issue; I’m finding it really hard to get checked.
It’s turning into a bit of a battle with my community midwife who seems reluctant, can never be reached via telephone, blasts through apts and only wants to see me every 3 weeks.

I feel like a massive inconvenience but the hospital and GP both point me there saying I should be being checked frequently. The hospital can’t take over my care until I actually get the condition again and my GP (whilst fab and very sympathetic) don’t specialise in pregnancy and are pretty busy.

My Midwife keeps telling me that ‘guidance about the liver condition has changed and we don’t need to be overly cautious’ but that’s not what the consultant clinic say 🤷‍♀️ I’ve told her this but it doesn’t make a difference.

Just feeling a bit passed around and concerned about my baby really. I was seen at my GP on Friday and told I need a blood test and frequent monitoring and to chase this up on Monday. I know they mean chase it with my midwife but I also know that’s totally pointless as she won’t answer the phone and even if she did she’d tell me to wait till my next apt in 10 days time.

Im tempted to just ring the GP and act like I thought they were going to do the blood tests. See what they say.

Cant you get the GP to put something in writing? Or just tell the midwife that the GP has said you need to be seen more often.

Cant you have blood taken in the gp treatment room? How often does consultant day you need tested? Get him to put this in writing.

Can you request a new midwife? Don't be fobbed off.

Can't you contact consultant directly (their secretary)? I'd ring the hospital up

New midwife. If you feel your not being treated to an efficient clinical level there is no reason you can't change.

I’d contact PALS and demand. Anything that has a risk of stillbirth is worth demanding all possible to help prevent.

All your gp has to do is put the request in the system why are they expecting the midwife to do this? It literally takes seconds to do and cc the midwife in on the results

I had issues getting checks I needed as directed by my consultant and ended up finding her direct email address via google and contacting her to tell her and ask for help. She sorted it for me that day. Could you try that?

Your GP just needs to take the bloods and send it for testing.
Either he, or you, can then show the results to the hospital consultant.

I’m glad no one thinks I’m being a drama queen or unreasonable.

Chasing the NHS around doesn’t come naturally to me I feel like a bother but I will ring the GP and hospital tomorrow to ask about regular blood tests.

I do worry about the still birth risk of course. Doesn’t help it was picked up late in my first pregnancy and caused a bit of panic, lots of hospital trips and then induction. That would be even harder to manage now I have a small toddler at home too.

There will be a head of midwives for your hospital/trust or a similar title. You can normally get their email address online and I would email them and outline your concerns. They are also the person to request a new midwife from so maybe worth trying both.

Try and get the blood test at the GP on Monday. If they can't/won't then track down your midwife. Insist on the blood test or make an official complaint about her. Tell her you will do this.

This isn't the time to stay quiet. Hopefully everything will be ok but fight for your baby.

Is it obstetric cholestasis/ intrahepatic cholestasis of pregnancy? (It matches what you describe.)

Either way, YANBU. Insist.

Definitely push. Change midwife if needed.

Former midwife here. Call the antenatal clinic at the hospital and speak to a midwife there.

If you still get nowhere I'm afraid I would be mentioning her personal liability should the worst happen as you have repeatedly requested the care your consultant said you needed to be given.

Also leave a message for the consultant with their secretary?

Have you double checked the NICE guidelines?

Did you have OC before? Are you experiencing itching? If so phone the triage or maternity assessment unit - the number should be on your notes.

I would call the midwife, and if she refuses to do the bloods say “I want you to record in my notes that on today’s date and x other dates I have requested bloods and monitoring as advised by the consultant and you are refusing to do this.” I expect she will change her mind quite quickly.

There is a Facebook group for ICP Support (other name for OC), run by a charity, and the staff on there are really helpful at giving advice on this sort of thing.

Your midwife is correct that the guidance has changed recently and for low bile acid levels, they can be less cautious. But that relies on regular testing to know what the levels are!

In my second pregnancy, I had baseline bloods done at checking in, then again at every second appointment (until it kicked in at 32 weeks, and I was at the hospital 2 or 3 tines a week from then on in).

I found my second pregnancy really hard, as I was constantly waiting for it to start. If was almost a relief when it did.

If guidance on the condition has changed, have you found the NICE guidance and read it through?
I've not read that one, but generally find nice guidelines are in very layman-readable English and easy to follow.
Generally easy to find on google, but if you cant, next time you ask the midwife, request a link for the guidelines she is referring to.

I don't know how it works at your gp but the practice nurse takes blood, the only bloods she didn't take were for the GTT.

Just ring up and book in bloods at your gp. Obviously your mw should be more proactive and concerned and if she doesn't change her attitude you'd be right to complain.

Like a pp, I advise asking her to write her decision, against GP and consultant advice, in your notes. I suspect her decision will change.

The worst that can happen if you push is they get a bit annoyed with you behind you back. Keep pushing, it’s just not worth taking a chance and better to be safe.

Your midwife is correct that the guidance has changed recently and for low bile acid levels, they can be less cautious. But that relies on regular testing to know what the levels are

Exactly!
This is what I keep coming back with every time she tells me ‘guidance has changed and we don’t need to be overly cautious’
Yes guidance has changed but the change is ‘if levels are low, regularly monitored and being treated then it’s no longer standard practise to induce bang on 37 weeks’
The change in guidance makes absolutely no difference to how important it is to detect, monitor and treat the condition. That’s still exactly the same!

It’s like saying ‘standard practice is now key hope surgery rather than open surgery for appendicitis’ doesn’t mean you can ignore the fact you have appendicitis all together and therefore be fine!

PALS

Cooy the email to the head of midwifery

Make it exceptionally clear that your levels are unknown, and therefore you cannot safely be put on the less-cautious pathway.

You want their reasons in writing why (handed midwife) is making the decision on which care path for someone with extensive relevant history and on the basis of no testing. does the head of midwifery endorse this decision?

You have to go nuclear, I'm afraid, as there isn't time for other approaches.

And you don't want thus to happen to anyone else - someine who might be less well informed than you are