In this summary we discuss what women told us about contact with the hospital after they went home. Some had no follow up after their emergency, others had follow up meetings with doctors. Some found these meetings helpful, others less so.
It is good practice for women to be offered a follow up meeting with the hospital, several weeks after discharge. This can act as a ‘debrief’, providing women with the opportunity to understand the chain of medical events that occurred by talking them through in detail with staff. Many women who had this opportunity told us it was valuable in helping them make sense of what had happened. Being able to read their medical notes, to know the timing of everything, to “put the pieces together” and to have their questions answered had been very useful.
Mandy had a haemorrhage (heavy uncontrolled bleeding) and hysterectomy and was offered a debrief. To talk about what had happened some weeks after the immediate event was “really helpful”, because she had had time to reflect. She also said that reading her notes helped make things “clear in my mind. That’s why I can carry on as normal”
So you were talking about getting out and about and stuff. Did any doctors or anything come to see you during that time? Did you have any health visitors?
So the midwife came to see me the day after I was discharged from hospital, and again, two or three days later, and then she also, she did another visit I think. But sort of a few days or a week after that. So I think she came round an extra time than she might have done. But then she said to me, “Do you want me to keep coming here, or do you want to go to the clinic?” And I was quite happy to go to the clinic if I had someone to go with me, and so my Dad came and helped me get into… came to the clinic and that kind of thing. So I did get out and about doing things like that, but again with somebody helping. And then when we were transferred to the health visitor she came here the first couple of times and then we started going to the clinic as usual.
But yes, no, we didn’t have the doctor; the doctors didn’t come round to see me or anything like that. I had the usual six week checkup, but at the doctors. And then I had a follow up appointment with the consultant at the hospital at ten weeks.
And how was that? Was that the obstetrician? So the clinic appointment?
Was that with the same obstetrician who had seen you in hospital?
And how was that?
So that was more of a, a bit more of debrief than anything else, and so it wasn’t a detailed physical checkup or anything like that. It was more of a talk through what had happened again. Which actually was really helpful because I’d had time to think about, and obviously think a lot about what had happened and dwell on what had happened.
And I’d also got lots of questions about the longer term. I think up until, well for quite a long time, you’re dealing with that immediate how I feel now, physically what I can and can’t do now. That you don’t really have much consideration for longer term health implications and I started, at that point to have lots of questions about, Will I go through the menopause early? What will I be able to do? That kind of thing so it was quite helpful to have that follow up.
So on the whole you found that consultation quite reassuring did you?
Yes, and it was nice to be able to talk about what had happened from a medical perspective, away from the immediate event. I mean, she was very good at, she did talk to me several times while I was in hospital about what had happened and why it was necessary. But it’s quite, I think, because you’re living with, trauma sounds quite dramatic, but you’re in turmoil at the time. You know, you’ve just been dealt this huge blow that you’re not going to be able to have any more children, and biologically of your own. Or you’re not going to carry any more children of your own. And you’ve had, and you’ve been constantly told that you are very, very poorly. And so you’re dealing with that huge piece of news and trying to deal with a new baby, and feeling physically quite rubbish. So it’s really hard to absorb it all and take it all in and I don’t know that I’ve necessarily internalised everything that happened even now. Because you just, you forget things and so it was quite, it was really good to have that follow up appointment actually, to just be able to go through it again.
I speak to the, I went for a debrief after both births actually. But it was very upsetting after [second daughter] because a lot of it didn’t make sense to me. I didn’t know the timescale of it all. So they took me through it, and they were fantastic. It was step by step, each minute what happened. How many minutes to took to get her out from when they realised there was something not quite right.
Apparently when the doctor was doing the internal she felt [second daughter]’s head and then the head just disappeared out of her hands, so she knew that something had gone wrong and obviously that’s when she was kind of pulled out of the womb. So that’s when her heartbeat dropped and that’s when they took me through. So obviously without the debrief I wouldn’t have known that had happened, so it was really good to see, and they explained to me how quickly they’d acted and if they hadn’t been so quick, then things would have been very different, for both of us I think.
So that was really helpful having that. Very upsetting, but really positive, and I spoke to the lady there, who actually debriefed me on my first birth experience too. I spoke to her about having a support for women who’d gone through traumatic births, just generally, anyone whose had that trauma. And she said there was just no funding for it. Hospitals don’t have it. You would have to do it really off your own back. You’d have to work a way down to find mums to go to the group, and it just. It’s something I’d love to do, but it was just a bit impossible to do on my own. And particularly at that point in time I wasn’t ready for something like that. To go along and join in conversation is one thing, but to help organise that, I don’t think I could have done. But I know at some point that the hospital would have been interested in that. But unfortunately they just, they don’t have the money to do it. Which is really sad, because a lot of people go through difficult experiences with child birth.
Natalie had a haemorrhage and was offered a meeting with a “special team”, who were not counsellors but “who read through your file, word by word, and explain any medical terms and allow you to question decisions that were made, or query why did you do this and not this?” She found it helpful to read the notes and understand what happened.
Women who had been in the intensive care units were also offered support by ITU staff. Anna was in intensive care with septicaemia (blood poisoning) and has found the support offered by the unit helped make sense of her memories – “the Intensive Care let me go up there and have a look at the room I was in to rationalise my thoughts, the dreams I had. Brilliant, yes.” Strange dreams or hallucinations are common in intensive care (see Intensive care' patients experiences ‘Sleep, dreams and hallucinations’). Karen also found follow up helpful after her haemorrhage and hysterectomy.
So at what point did you get to see the ITU follow up, was that…?
It was probably about twelve weeks afterwards.
And was that helpful?
Huge, hugely helpful, because it made you feel, because after about six weeks I felt that everybody had kind of not forgotten about it, but moved on. You know, you’re alive you made it through it, you know, it’s time to put it behind you and everybody has moved on with their life and you’re just left with this yuk you know. And so to be able to be actually go into hospital and talk to people who knew, because even if you talk to some people who weren’t related to ICU, they still couldn’t really understand the trauma of what your body had gone through, having lost so much blood and what an impact that had on you. And so it was really, really helpful to be able to talk to them and they went through a questionnaire. Because it was important for them, you know, to know how people are recovering, so yes, it’s hugely helpful. So I think I went back every, initially every I think it was three months after that, every three months and then it went to six months.
And who did you talk to, was it nurse or…?
It was actually of the consultants, who is an ICU consultant and a sister whose, she was an intensive care nurse for 20 odd years, but she’s now gone on to doing this follow up care. So… they were great.
So you kept that up for…?
I’m still seeing them now.
You’re still seeing them now?
I still see them now. Because what they’ve said is that, people who have been through an ICU experience, they find it, it’s almost like because I’ve known them now for two years, they’re almost like family. I kind of have a closeness to them and they say that patients do find it, some patients do find it hard to let go, because its, it was an important thing in that person’s life. So, you get some patients find it hard to let go.
Some women were pleased to have the opportunity to discuss future pregnancies with doctors. Helen had developed HELLP syndrome a combined liver and blood clotting disorder.
And was there a sort of final sort of round up appointment that you had with the doctor?
Yes. I had two appointments four weeks after everything. So one appointment was with a professor of medicine sort of person. I knew I must have been sick when I got the professor. Oh, I was sick [laughs]. Which was where they said about the you know, 20/30% chance of it happening again, and they said, “You know, your liver’s back to normal, but your blood pressure’s not. Carry on.” Sort of thing. And then two days later I had a kind of a standard follow up with the midwives at the hospital, which was more about, you know, is your scar healing okay. What are you going to do about contraception blah, blah, blah. That sort of standard kind of stuff again. And so, and then yes, that was it, pretty much.
And do you feel that that’s been enough so far? Do you feel you’ve had enough information and enough follow up?
Yes. I think so. I mean I haven’t, you know, everything’s been fairly straight forward and, and normal in terms of recovery. I haven’t felt unwell. I haven’t had any problems. So, I don’t feel like I needed I anymore and then, obviously because at the GP as I said, it was [son] and things like that so, I felt like I could link back in there if there’s more to be done. Because at the moment, it’s kind of well it’s all fine except the blood pressure which the GP can probably deal with just as well as, as they can at the hospital.
Oh I’m trying to think. I think it was about three months. It, I was for the first week that I was discharged, I had to see a midwife every day, and to have my blood pressure checked after a week the midwife discharged me and I had to go to my GP four weeks after that to check, to have a check and then I was going every four weeks, and at about three months they were happy, you know, that my blood pressure was pretty stable. And took me off medication. I have had it checked a couple of times since, and its, its generally, generally fine. It’s slightly on the high side but it doesn’t need medicating.
Okay and have you had any follow ups at the hospital?
No I haven’t. What, when I was discharged my consultant said to me, that were we, would we consider having any other children, which at the time I had no idea really and she said to me, “You know, before you even consider having another child, have your GP refer you back to me and we can, you know, monitor you, from the very, you know, from the very early stages of conception and so as to try and…” I suppose if I have a problem with the blood pressure to, to try and tackle that at earlier stage. So that if I did develop pre eclampsia again, you know, hopefully it would be at a much later stage. Because I think, from my understanding is that I, that its usually something that about quite later on in pregnancy and I was only 29 weeks gestation.
I had my six week post natal check. Which was fairly kind of, I guess perfunctory, you know, she sort of said, “Are you okay?” And I said, “Yes, I’m fine,” [laughs]. So there wasn’t a lot of sort of delving into what had happened and why and that sort of thing. Yes, there hasn’t, there hasn’t really been a lot of follow up for me, at all, but you know, like I said, I do feel that if I wanted to, you know, I can go back, I can go back to the, to the consultant and discuss.
Women valued being told that the door was open if they wanted to come back to discuss anything in the future. The opportunity to go back in and meet staff, even if it wasn’t to discuss the medical events, was described as a positive step towards “closure”.
The one thing that I did do when [son] was one, I wrote to the hospital, because they were wonderful. And I said, “Look, we’d like to make a donation, but I’d love to bring [son] in, and [husband] to come see you all.” You know, and they were great. They had a little party for us. It was lovely. And what they did. And what was beautiful about that. Again, you know, its, they didn’t have to do it. But we saw all the consultants that looked after us. There was about three or four of them and then we had the head of midwifery. We had the midwives that looked after us and Intensive Care people. Okay so we had everybody in this little room with a cake and everything else.
And [husband], I told [husband] I’d organised it. I said, “Look you can come if you want to, but I understand that…” You know, he never wants to set foot in there every again. So I said, “Look, you know.” I said, “Let’s go. Because I think it’ll be really good. So I need to see where I was, and thank the people really.”
So we went back. [Husband] was, was really not sure. So we went in and had this lovely party. And then we came out. [Husband] was still, you know, he was fine, but I was very worried about it. So we came and talking about it in the evening whenever. And this thing, you know what the beautiful thing about that was seeing those consultants smiling, because throughout that whole process it was all so serious, and…
I think that was the most lovely bit. And I needed to do that I felt, because I wanted to get closure on that. The whole thing. And I know [husband] was still getting very emotional about things. And so anyway, yes, that was the best bit seeing the consultants, seeing the consultants smiling [laughs]. And thrilled that we were all okay. So it was great for them and the comments they made afterwards as well were, you know, it was lovely, and the needed it as well. Because it was such a tense time. There were consultants that postponed their holidays because they needed to operate. There were, you know, there were midwives that… you know, that wonderful mid… my wonderful midwife who came to see me in the Intensive Care. So they really, you know, they really a really caring community. I think that made a huge difference for us because I think knowing that they cared actually above the whole professional need to operate, we need to do this. Really made it special for us.
And so any way. So yes, there was a bit of closure after that and I felt it made a dramatic effect you know, for us as a family. We felt we could move on really from here. But yes.
For other women, there was no follow up offered. Julie had pre-eclampsia (high blood pressure) and wasn’t offered any follow up. She would have liked someone to have sat down with her and talked through what happened. “I want to put the picture together so I can sort of work forward from it.”
When you left hospital, what sort of follow up were you offered or given?
I was given… I had, sisters, I had a district nurse come out, because I had packaging’sand things to change. I was given, my health visitor came out to see me and our family GP came out to see us as well. And our family GP at the time was quite, he’s quite an old school, kind of GP. And he came and did a home visit, and I remember saying, “Oh my goodness, you know, I must have nearly died, if he came out. Did a home visit. Do you know what I mean. It was like… other than that it was literally just a six week checkup and then that was it.
At the hospital or the GP?
At the hospital, at the hospital. Yes.
Which actually took place in the maternity hospital. So that was just not, that wasn’t very pleasant at all.
Who did you see at that point? Was that your consultant?
The consultant yes.
And do you feel that he explained to you sufficiently what had happened and kind of helped you?
What would you have liked from him?
I would have liked to have had some kind of, or been involved in, I know from hearing through the grape vine that there was some kind of debrief that happened. That my case was kind of obviously looked into and sort of, they kind of had a look at what had went wrong. And I would have liked to have been involved in that. I would have liked to have had, not even a say I would have just liked to have known what had happened, because I still don’t know to this, to this day, quite what happened. I just kind of know just kind of bits and pieces and that’s what really frustrating is like there’s bits and pieces in my notes, you know, I know that, I know how much blood I lost. I know that I had a few injections of like Oxytocin I think it was to try and get the womb back down. I know I was open for a lot, I know I was in theatre for a long time because of the time I went in, and the time my Dad said I came out. So I know, and I know that another surgeon came in from one operation he was doing and he came in, but that’s only because that’s what bits and pieces. I’ve never had one person sit down with me and say, “Okay, so you went in at this time. We started to do this, and then that went wrong. So we did this and then this happened. We did this and this happened. And then finally you had a hysterectomy and we did this.” That’s never, ever, you know, really been made clear for me. Which again has, I think that hinders part of the healing process because you do think, you know, how the heck happened? You know. So I think that a major sort of thing. I think the fact that I had no information on hysterectomy, that was like a major thing.
Okay and did you have any sort of follow up at the GP in terms of you know, monitoring your iron levels and how you recovered?
No, nothing at all, no. No I mean I don’t know that, I don’t know how it works with your notes or anything. I mean I had my follow up six week check with the GP as normal and you know, they certainly didn’t know anything about my birth. You know, I had to tell them what had happened and things and they didn’t seem really concerned.
Right so they hadn’t heard that you’d had this post partum haemorrhage?
No. They didn’t know that.
Right and do you think it would have been a good idea for them to know?
I guess it probably would have been, because if I’d had any follow on problems it probably would have been the GP that I would go to first in that circumstance, so yes it probably would have been good for them to know. Yes, and in some ways, I guess I kind of feel like it would have been nice to have something from the hospital to say, you know, ‘This is what happened. This is what we did. And this is what we expect the ongoing consequences to be, if there are any, you know, if there is things like if you have another baby there might be an increased chance of it happening again.’ Or even if they say, ‘There’s no risk of that or whatever, you know, it would be nice to have something that kind of concluded it, I guess. Because you don’t get your notes, you don’t ever know what really happened I guess, or what, what it appeared like from there point of view. It would just be nice if they had sort of said, you know, ‘this is what happened, and this is what we think might happen in the future’. Or, I don’t know just something to conclude it.
You were never offered any follow up via the hospital to go and see the doctor or the surgeon?
And do you think that would have been helpful?
Well yes, I mean I guess just in terms of closing it off it would be nice for somebody to sort of say what had happened and explain it a bit more I guess. And yes, and to know if there was going to be anything in the future that might be an issue or not.
Others were offered a follow up, but did not find it helpful. Lisa was invited to a meeting at the hospital after her haemorrhage and hysterectomy, but found it very difficult being asked to go back to the area where she had been before for ultrasound scans. “We sat there in the waiting room, surrounded by pregnant women waiting for their scans in shell shock. We didn’t speak… staring into space… that was where we used to go when we were happy and excited about everything.”
Some people we spoke to had lost their babies during labour, and some said that for them, the lack of follow up was particularly upsetting. Joanna and Mike felt very upset that their hospital seemed so slow in investigating the death of their daughter. They felt that once they got home they were “completely and utterly forgotten about”. They had to chase follow-up appointments and the report into their baby’s death. Five months down the line, no one had spoken to them to see how they were, or for their version of events.
Joanna is a medical sales representative, married with one daughter. This was her second pregnancy. White British.
Mike' The meeting was basically presenting us with the findings of their investigation of which we had to read during the meeting. And we critiqued as being incorrect. There was a lot of things in there that the head of the midwifery services hadn’t realised. For example the notes, you know, me telling them that notes hadn’t been taken until whatever time it was. And she didn’t know that. And that wasn’t in the report.
And there was a big discussion wasn’t there about us, because as I said we’re a year, not a year, we were five months down the line.
Mike' Five months down the line, and I basically said, “Well no one’s spoken to us.” And I again, coming from my experiences in the police force, if there’s a murder first people you speak to are the witnesses. This was a dramatic life changing event, but recall is pertinent from those people within a certain time frame. You know, the police call it the golden hour of investigations. And I said, “Well we’re five months down the line, and no one has contacted us to ask us how we felt things went on that night, and what was chronological order.” And they kind of looked stunned by that really. Because if they can’t do that, it’s an internal investigation in relation to the midwifery care and the consultants and stuff like that. And my point was, well actually none of that matters if you get it wrong, you know, there were two of us in that room at the time. Me as an independent person, Joanna was the one who had had it done to her, and the midwife who was doing it. And it was kind of left, “Well can you provide us with statements based on what happened.” Of which we said we would.
Joanna' We did. We said, you know, that we would do that, and then at the time, it was kind of the end of February, and you know, I think we came away. We’d just, we’d lost a little bit of our fighting spirit. And we just had no energy left in us to do it, and we went on holiday didn’t we? And we decided, we booked a last minute holiday and we said we’re going to go away, and then, then we just, we just had this massively busy period in our lives, and you’d just kind of got a new job hadn’t you, and time started to tick on. And during this time…
Mike' There were other things as well wasn’t there, because basically up until that point I think, I’m always the type of person that thinks the glass is half full, and after reading that report I realised actually there were a lot of failings. And I hadn’t even contemplated any type of legal action until that report, and I came away from that hospital completely deflated after that meeting and basically commissioned a solicitors firm to look into it.
So I kind of had the attitude coming from that meeting yes, it was basically, ruined our life and everything else, but I came away from that saying, “Why should I?” “Why should I now produce a statement for them, when they haven’t given us the consideration that we deserved from the beginning, and secondly the report they’ve written hasn’t even taken into consideration any feelings we had.
Joanna' We just got incredibly frustrated.
Mike' Yes. We’d never supported that report.
Joanna' And to this day we haven’t heard any more, anything at all from them.
So you’ve had no follow meetings?
Deborah, who ultimately took the hospital to court, would have liked someone to apologise, “acknowledging that somebody made a mistake.” However she did receive a lot of support from a bereavement midwife who was “fantastic”.