Maybe to spell out the kind of, you know the facts of it a bit more. I know that it is it is like one of these conditions where there is a lot of unknowns with it isn’t there, and you know it’s one particularly where they don’st know quite where it comes from you know; there’s a lot of theories isn’t there, but it seems like there’s a I suppose, you know as people become, you know as there is more research and that, you know there is more understanding of the risk factors, where it comes from, possibly how it can be managed and treated. Oh because I remember this aspirin actually this is another thing, it was aspirin, you know take aspirin. Why didn’st anyone tell me to take aspirin, you know; I could have taken aspirin without any trouble at all couldn’st I you know? So, yeah, yes I think, I think just to kind of just to sort of factor it in a little bit more into advice.

The possibility of it because it’s not that unusual is it? I know it’s a, you know reasonably common in later pregnancy.

I know my case was unusual. The fact that a doctor, or any medical professional I’m saying doctor but any medical professional can actually say, “Stop, we don’st know what’s happening, but let me discuss it with one of my colleagues who might know something,” because every doctor has their own experiences especially when they’sve been involved in numerous patient care, different hospitals.

Even just reading different journals there might have been something that just clicked and they said, “Oh, what about this,” or a different treatment or, you know a different option. So, for me that was reassuring. I was in a huge teaching hospital, and it was nice to know that that still is the case that, you know even though they might have qualified 20 years ago, they are still able to say, “Stop, we’re not sure, we need advice.”

I think pre-eclampsia should-,on the booking appointment, that first appointment when you set foot in that hospital and you talk to your midwife about it all you know, your family history, talk about everything; they should specifically ask you pre-, those two words pre-eclampsia. That word needs to be used in that booking appointment and I never once heard it in my booking appointment. I said to my midwife, My mum had high blood pressure in her pregnancy and it continued, you know, even once she’d delivered. She still had high blood pressure, and that was it; it was written in my notes and nothing was done with that information.

And everyone needs-, that needs to be a question in the medical history. Like it pre-eclampsia like I want someone to say, “Have you had a family history of pre-eclampsia? Did anyone ever have high blood pressure in their pregnancy? Did your mum or sister ever have high blood pressure in their pregnancy?” Like I want everyone to be able to do that and I want them-. And one of my friends had the same kind of due date as me. She was told by her midwife that if you get any pain above your bump and if you start getting headaches, you should come to hospital straight away, and I think why wasn’st I told that information?’s So, I wish there was a lot more consistency.

And have you got any messages for healthcare professionals caring for patients with pre-eclampsia or HELLP?

Just to be as honest as possible especially if the patient’s asking questions. Had it not been for Stephen really pushing the doctor on the Friday night, the day after, as to how ill I was what were the expectations, I don’st know that we’d ever have been told any of that information but I distinctly remember him pushing to say, “Right, tell me what is wrong with my wife; tell me what the long term effects is this long term, is it short term?” And actually if you knew again it might just be my working in a way but I can manage if you tell me how long I’m going to be in this situation. And I know it’s a bit of an unknown but if they were able to say to me, “This is what normally happens, and this is what we’d expect in you to happen, happen to you,” then that’s easier to deal with than just having being told nothing.

And it was that lack of information. I think looking back again they were probably waiting to see what was going to happen. But you know if they’d told us that they waiting to see what was going to happen, that would have been more beneficial than just not hearing anything.

I think they could have explained to me what was happening. The problem was, I felt they weren’st forthcoming with what was wrong and they weren’st, they didn’st, they might have diagnosed what was the problem, but they never told me. It was my body. It was happening to me. I should have known. They should have advised me of what was happening to me but they didn’st tell me and I felt the communication was lacking, with I felt they were a bit indifferent as well from their attitude. It was their attitude that troubled me the most. It was not the fact that they didn’st tell me, it was the attitude, very dismissive, very indifferent, Oh we’sve seen it all before. But I hadn’st seen it all before. Surely we are individuals. We are not, I felt like I was, it was like a conveyor belt.

What could they have done differently?

A bit more, empathy is missing I think. That’s missing. There’s no empathy and there’s no frankness. I’sd rather someone be frank with me as to what is happening and honest, that was missing. I felt like they weren’st being honest because if they were, they would tell you exactly what was happening. And you could decide. Other things they could have changed was allowing you to take part in the decisions. Answer the questions you ask and see the same doctor. You see a different doctor every morning, thinking, and who are you? And it got to the point where I had to repeat the same message that I told them yesterday, to the new one, to the new one, to the new one, you feel like you are repeating yourself, when they should have known how long, how many weeks that I was there. Is she, everybody should be singing from the same book and the same hymn sheet, you know. When you tell them, Well, It should be surely in the notes. Oh, it’s not here but could you tell me anyway. I wasn’st here yesterday. So forget about that doctor, you tell me now. And who are you? I’m the new registrar. Well, I don’st feel inclined to actually repeat myself again and someone who’s very, very I’m into detail. I was really disappointed I can see where the errors happen because a lot of the medical notes were missing, well nobody bothered to put the notes in or write it down and I found that really frustrating because I kept watch.

Even during the night I remember a couple of midwives just coming and sitting chatting to me, especially with [second son’s name] as well, they came and they gave me the time and they were asking me if I had any questions or if I had wanted any help with anything, and the nursery nurses at the [teaching hospital] were fantastic, they were Well, we were saying like, “Can you show us how to change the nappies, can you show us how to dress him, can you show us how to bath him,” and I think the modern day thinking is that most people will know those things. But like we were both professional people, I had no idea how to change this baby. So, it was great that they gave us all the because we asked they gave us all the information, but I don’st know that they’d give you it if you don’st ask.

I think they try not to patronise you too much.

I think that if there is a if the maternity and neo-natal ward be a more organised they’d be working as one instead of a separate entity. That might be asking too much, I don’st know, but maternity obviously does their own thing; neo-natal unit does their own thing. So, neo-natal unit looks after the babies; maternity looks after the mum but they are together, so I think that has to be taken into account.

It’s just like when my baby was transferred they thought about my son; they haven’t given much thought about the mum. Or the logistics, or the family itself. So that needs I think that needs to be improved more.

As much as I wanted to go home I knew I needed I be better in myself to go home. So, on the Wednesday they wanted to discharge me, but on the Tuesday night my blood pressure went sky high again so I actually questioned it when on the Wednesday morning the doctor come in and was like, “Oh yeah, we’re going to discharge you today.” I was, “Why? I haven’t even had stable blood pressure for 12 hours, never mind 24. Why am I being sent home? Don’st get me wrong; I want to go home.” And the midwife went in, “Right,” she said, “I’ll tell you what we’ll do two more blood pressure readings for you and then we’ll discuss it after that,” and they went sky high again. So, I knew myself I wasn’st ready to go home on the Wednesday and I’m glad I spoke up because I don’st know; I don’st know if my body would have coped with the third time going through, with the blood pressure and everything else that I had with it. So, as much as they are professionals I would say if you’re not happy say something.

If you don’st feel ready just ask them. OK they might have a huff and a puff but surely it’s better to have them have a huff and a puff than you be sent home when you’re not ready, and you end up back in anyway, because that’s clearly what happened the first time.

Whenever I find out someone’s pregnant now I’m like, “You really need to keep an eye on your blood pressure and if you get any pain, like the pain I got, you need to go to your doctor; you need to go back to the hospital and put your foot down and say you’re not going to go home until they’re content and they’re happy with you.” And looking back I wish I’d that Sunday night when she sent me home, I wish I would have said, “I’m not going home, you need to keep me in the hospital.” I wish I’d kicked up more of a fuss.