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.

@InsanelyPregnantAndSore

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!

You are completely right, and unfortunately, lots of people with this condition seem to have the same problem in getting regular testing. I think it's an expensive test, and often can't be done in-hospital.

You just need to push and push. Once I was diagnosed, I was under the care of the hospital, and never saw my community midwife again. Don't be scared to piss her off.

Just to give you a bit of perspective (completely kindly meant and because I fully recognise how strong the taboo of 'being a bother' can be) - you are taking about the possible death of your child here.

You're not really fighting for your own care so much as fighting for something which could save the life of your baby.

Call the GP every day until they set up regular appointments for you. Be polite at first. If they try to fob you off, use phrases like, 'standard of care' and 'liability' (joking. Sort of.)

Annoy your midwife. Be forthright about your need to change your midwife. Be a bother.

Please consider this your permission, if you need it!

You need to nag your GP with this one. They are perfectly equipped for doing this blood test for you.

With respect, as a GP I don't agree with PPs who say the GP should be doing this. It's quite right that our phlebotomist can physically take the blood, but the big issue here is interpretation. The results will initially go to whoever requested the test. The test needs to be requested by someone who understands how to interpret and act on the results. As a GP, this isn't me.

From a commissioning point of view, we're also not commissioned/funded for this work, usually.

I think this is firmly the midwife's responsibility, and I think you should speak to the maternity department at the hospital, and then PALS, if you're not happy. Even if your GP is happy to help, that may not be the safest and best route to take.

This terrified me when I was pregnant, and I didn't even have any history of it in my previous pregnancies. I mentioned I had been itchy at one of my appointments (not in UK) and asked to have the bloodwork to rule it out. In your position, I would continue to insist on being heard, as the potential consequences are an unacceptable risk - I'm sure you feel the same way, ESPECIALLY with a history.

Please do not feel that you can’t push and push with the NHS. Sometimes that’s the only way. There is usually a supervisor of midwives or pals. Mention you would like to escalate and ask your midwife what the complaints policy is as you feel that you aren’t being properly monitored according to nice guidelines (or just send that straight to pals and push to speak to her senior and then just keep pushing).

I had oc from 11 weeks in my first pregnancy and 14 weeks in my second. Bloods twice a week and weekly scans both times from then. I would have been terrified if I had a third pregnancy and they didn't routinely check even with no symptoms.