Advice on hospital complaint

[ladydorito]

Hey everyone.

I wanted some advice on how I can assertively stop the early pregnancy unit at my local hospital from continually discharging me.

Situation is this: was diagnosed with a subchorionic hematoma at 6 weeks. This causes sporadic but very scary bleeding. I have had three "big" bleeds with clots and a smaller one today. The bleeds are normally followed by a week of spotting or so. Each time baby has been checked on a scan and is fine although I am aware SCH can cause complications so it's very hard for me to relax.

I'm now 11+1.

The issue I'm having is that the unit keeps discharging me after every scan. What this means in practise is that each time I have a fresh bleed, I'm told I need a referral from my midwife/GP to be allowed back onto the unit for a check up.

Today, when I rang the unit having suffered yet another scary bleed, I was told they couldn't scan me without this referral. Last time it happened, my midwife advised me to go to A and E as it would be quicker than her having to wait for a referral to come through, which I did. I had to sit bleeding and wailing in A and E for hours - only to be sent to the unit I knew I needed to be on in the first place.

I told the nurse on the phone today I wasn't prepared to do that again - that I had been diagnosed with a condition on the EPU that hadn't resolved and that I didn't understand why I kept being discharged from their care. I would get it if I'd had a random bleed once, but they've found a 4cm haemorrhage in my womb, they can't just keep sending me away and telling me I'm discharged and all will be fine when I've bled so many times.

The chances of me getting a referral from my GP or midwife on a Sunday to allow be to be seen tomorrow are next to nil.

Anyway she agreed under duress - I was very distressed by this point - to scan me tomorrow following today's bleed, but I know the same is going to happen again, I'll be sent home, discharged, bleed again and the horrible cycle begins.

I have the highest respect for these wonderful nurses but I need to start advocating for better care.

Does anyone have any tips/language I could use in my appointment tomorrow to basically beg them not to discharge me?

Thank you so much - and if anyone has also had a hematoma and has any advice/positive stories, please let me know. This is our first baby, and so very very wanted. I am heartbroken that my womb is letting them down.

I have no advice about the complaint, sorry.

About the bleeding, have they put you on progesterone pessaries? New NICE guidance says you should be prescribed for bleeding.

I had a hematoma. All fine in the end.

They are just following process re discharging.

I had that. They know what it is, and that it’s not an issue. So it makes sense to follow the normal process.

DD is now three and other than bleeding the pregnancy was fine. I’m 16weeos pregnant again, and no bleeding so far.

Hi op, I had the same thing so I know exactly how terrifying and upsetting this is. I have to say I had a slightly different experience with epau. We went initially at 6 wks, which was 2 very long weeks after the bleeding started, then they couldn't see anything. Went back at 8 weeks and they were able to see the hematoma and a heartbeat. At that point we were discharged because in fairness, a hematoma tends to resolve one of two ways, either it bleeds out/is reabsorbed back into the body and all is fine, or it comes away and can take the pregnancy with it so it is known as threatened miscarriage. Epau were lovely but very very clear with us that we had no guarantees that things would work out and that there was really nothing could be done about it, just wait and see. I continued to have bleeds and even though we were discharged just like you, they did tell us that we could come back up at any point to be scanned we just needed to ring epau directly. I don't know if that's different in NI than mainland but I do know they are under a lot of pressure and there was one occasion they simply couldn't fit us in that day so we needed to wait a day before being seen. I did speak to my gp but they didn't need a referral they told me to ring epau direct. The gp had advised me to continue taking regular pregnancy tests to make sure things were progressing so I did that up until about 9 weeks and then I just got to the point where I felt it was counter productive - things will be what they will be and I left it until our 12wk scan .

To be honest, they can't treat you, all they can really do is the same as you can do- wait and see what happens which is the really brutal part. They also generally don't scan more than 2 weeks apart in any one go so I had bleeds that I wasn't immediately checked after. We didn't get the all clear until I was 16wks and we could see on scan that the hematoma had emptied and was finally starting to heal. It was a really bloody long 16 wks and I don't think I fully processed just how hard it was until we were out of it.

I think the best thing you can do having been in your shoes, is try to rest as much as you can but keep your mind occupied. Binge watch all the TV, talk to a friend you trust about what's happening so you have someone other than your partner to talk to, reduce your exercise and housework, read lots, get music on whatever you can to take your mind off what's happening. I came out of work for a few months and did a modified version of bed rest (full bed rest can increase your risk of clots) and took it day by day. I honestly think I was about 5 months along before I stopped being nervous going to the toilet incase I'd bled again. It's really hard on the head.

But I'm having a section tomorrow at 39 wks and all is completely fine so far - we made it in the end so there's still lots of hope. You just need to get through this really crappy part and I genuinely hope it works out for you as well. 💐