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Pre-eclampsia and high blood pressure in pregnancy

Messages to others about pre-eclampsia

Women and partners had messages for others, including health professionals and other pregnant women. Their advice was often based on things they felt were missing or could have been better in their experience.
 
Messages were aimed at health professionals, pregnant women and the general public. Many people thought that it was important that more awareness was raised about the condition. Some felt midwives and doctors had not been informing their patients about the risks early enough and cautioned that, if mothers/parents held back about difficulties they encountered in their own pregnancies, people would remain unaware of how common pre-eclampsia is. Josie suggested more posters about pre-eclampsia could be put up around hospitals.
 

Josie encouraged more research into pre-eclampsia and sharing information with pregnant women at risk of developing the condition.

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Age at interview: 45
Sex: Female
Age at diagnosis: 39
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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’t 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’t anyone tell me to take aspirin, you know; I could have taken aspirin without any trouble at all couldn’t 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.
 

Claire thought it was good that her doctors were open about the limits of their knowledge and that they put in the effort to find out more about the situation.

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Age at interview: 39
Sex: Female
Age at diagnosis: 39
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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’t 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’ve 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."
Messages for health professionals
  • Ask women about risk factors and highlight the symptoms
Of the women we spoke to, some had ‘high risk’ factors for pre-eclampsia but they had not been warned about the condition or told about symptoms  to look out for. Aileen said pre-eclampsia wasn’t brought up by her doctors initially, despite her history of hypertension, so “it didn’t cross my mind that my blood pressure would affect my pregnancy”. Stewart and Claire thought that partners could be involved more too, as they may notice symptoms that the pregnant woman overlooked or dismissed.
 

Munirah said midwives should ask about risk factors for pre-eclampsia at the booking appointment and make women aware of symptoms.

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Age at interview: 27
Sex: Female
Age at diagnosis: 27
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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’t I told that information?’ So, I wish there was a lot more consistency.
  • Listen to women’s concerns about possible symptoms and illness
Some women felt that their health professionals had not taken their concerns seriously enough. Kate said that a pregnant woman shouldn’t “be fobbed off, she should be taken seriously”. Paige asked, “Why did it take to the point where I had to be rushed into hospital and have doctors watching over me 24 hours before anyone would listen?” Claire thought it best to “err on the side of caution”.
  • Provide sufficient information and communicate it clearly to women
Health professionals were a key source of information for women, their partners and families about pre-eclampsia or HELLP syndrome. Mairi thought that “it's probably really hard for the health professional to” explain conditions like HELLP and give the right balance of information for each patient. However, getting information right could make a huge difference. Aileen said that, “at that time there's lots of things going on in the mum's head emotionally, psychologically, and I think being sensitive to their needs is very important”. Some people added that explanations should be simple and avoid using lots of medical jargon.
 

Mairi felt that her doctors were not always very forthcoming with information. Her husband, Stephen, had to push for an answer at times.

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Age at interview: 36
Sex: Female
Age at diagnosis: 30
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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’t 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.
  • Be aware of the emotional impact and offer support to women
Many women urged health professionals to be more considerate of the emotional impacts pre-eclampsia had on them, their partners and families. This included the emotional experience during pregnancy and shortly after birth, and the potential for long-term emotional impacts. While some women spoke fondly of those who had been kind to them and offered reassurance, others felt this had been lacking. Tracey said that sometimes “mums are forgotten along the way”. Paige encouraged health professionals to “try and reassure them [women with pre-eclampsia] that it's not their fault – as much as they feel like it, it's not them, it's unfortunately just something that happens”. Some said they would have appreciated being offered counselling or signposted to other types of support resources.
 

Hanna wished her doctors and midwives had been better at keeping her informed. She didn’t think information about her situation was shared between the doctors, which meant she had to keep repeating her story.

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Age at interview: 39
Sex: Female
Age at diagnosis: 37
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I think they could have explained to me what was happening. The problem was, I felt they weren’t forthcoming with what was wrong and they weren’t, they didn’t, 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’t 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’t tell me, it was the attitude, very dismissive, very indifferent, “Oh we’ve seen it all before.” But I hadn’t 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’d rather someone be frank with me as to what is happening and honest, that was missing. I felt like they weren’t 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’t here yesterday. So forget about that doctor, you tell me now.” “And who are you?” “I’m the new registrar.” Well, I don’t 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. 
 

Mairi appreciated her midwives being friendly and checking she was okay. She also had a lot of support from nurses with baby care.

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Age at interview: 36
Sex: Female
Age at diagnosis: 30
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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’t know that they'd give you it if you don’t ask. 

I think they try not to patronise you too much.
  • Give information about next steps and follow-up after discharge
Some felt there needed to be more support after giving birth and leaving hospital. Not everyone had been told about problems continuing or developing after birth or had extra medical checks to monitor for possible problems. Hanna thought there should have been a phone call from the hospital to see how she was. Being discharged and getting home were sometimes the points when shock set in, and some women struggled with the emotional impact of their experiences. Emma said there needed to be better after-support. Some women had met with their health professionals at a later date, which they often found helpful and reassuring. Betty suggested that offering a debrief meeting should be “a mandatory part of the process” for all women, to help them understand and process what has happened to them.
  • Provide co-ordinated care
Some women felt there needed to be better coordination and communication between different health professionals, sections of the hospital, and primary- and secondary- care. Women found having to repeat their medical history to various health professionals frustrating and exhausting. Kate thought this could be avoided with better communication between staff when changing over their shifts. Betty said some information had not been recorded in sufficient detail in her medical notes. Continuity of care was also mentioned and some women spoke about the benefits of having a dedicated midwife who they saw at every appointment, rather than a different person each time.
 

Aileen thought it would be good if there was more coordination at her hospital between the maternity unit and the neonatal ward. Her baby was transferred to another hospital but transport arrangements weren’t made in time for Aileen to go with him.

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Age at interview: 40
Sex: Female
Age at diagnosis: 35
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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’t 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.
Messages for pregnant women
  • Be aware of the symptoms of pre-eclampsia
Most women said they hadn’t known a great deal about pre-eclampsia or its symptoms to begin with. They encouraged pregnant women with any concerns to seek medical help right away. Paige said, “just go and get checked for your own peace of mind”. Claire thought it was important that women do not dismiss symptoms, such as swelling or headaches, as being “just pregnant”. Stewart suggested it would be good for partners to know the symptoms too so they can help keep an eye out for them. Some women said that keeping a lookout for symptoms after giving birth was important too, as high blood pressure problems can continue for some time and pre-eclampsia can occasionally have late onset
  • Be persistent with seeking medical help
Some women felt that they had needed to be quite assertive with their health professionals. Lyndsey said to “put your trust in the people [health professionals], they’re there to help you – but, obviously, if things don’t seem right then speak up”. Aileen advised, “don’t be afraid to ask questions”. Dominie encouraged women to “keep going back, even if you feel like they’re telling you there’s nothing wrong” because the situation can change quickly and become serious.
 

Paige said women should speak up if they are worried about anything, including needing more blood pressure monitoring in hospital before being discharged.

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Age at interview: 20
Sex: Female
Age at diagnosis: 19
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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’t 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’t ready to go home on the Wednesday and I'm glad I spoke up because I don’t know; I don’t 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’t 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.
 

Munirah encouraged pregnant women to be aware of symptoms and be assertive with seeking medical help.

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Age at interview: 27
Sex: Female
Age at diagnosis: 27
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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.
  • Seek emotional support
Pre-eclampsia could have a big emotional impact, both at the time of the illness and afterwards. Some women had found support to help them cope. Sometimes they had initially been reluctant to talk about what happened, but many found there came a time when they felt able to open up more. Kay thought that, looking back, she should have told the people around her what she was feeling. Julie recommended mother-baby groups. Angela’s message to other women who have (or previously had) pre-eclampsia was to “stay strong and don’t be hard on yourself”.
  • Be aware that pregnancy, labour and birth might not go to plan
Some women found that having pre-eclampsia changed their expectations for the rest of their pregnancy and birth. Things became unpredictable, sometimes with little chance to process the change or plan ahead. Because original birth plans might not be possible, some women felt it was important to consider alternatives. Lyndsey had a caesarean section and wished she had known “to ask for them to put the baby on me, just even if they'd held him near me” so she had some ‘skin-to-skin’ contact right away. Dominie was a midwife and felt strongly that women with pre-eclampsia should be able to try for a vaginal delivery if it is safe for them to do so. Julie thought there should be some more information given about emergency caesarean sections to help pregnant women prepare for the possibility: “not obviously all the ins and outs, because you don’t want to know that, but just if things do go wrong”.
 
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Tracey thought more communication from health professionals would be good and suggested that women think about alternative birth plans.

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Age at interview: 39
Sex: Female
Age at diagnosis: 29
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A bit more… yeah a lot more communication would have been just lovely. Just, you know especially afterwards someone come in to hold my hand, because I was scared, really scared and, you know there's no-one around. So, just someone coming in to see if I'm alright and just talking over the last twelve hours of what had happened and what will happen. It's having that plan, you know they all talk about the birthing plan and everyone wants to be organised and ready, but actually once it does happen, you know the goal posts change and you need to have another plan because otherwise you are in limbo and you just float along and being told what to do.
  • Consider self-monitoring your own blood pressure
Those who took part in a medical study about blood pressure monitoring in pregnancy (BuMP) often recommended it as a way to get extra “reassurance” about their health. While high blood pressure is not the only sign or symptom of pre-eclampsia, being able to self-monitor could sometimes help identify developing problems. However, some in the study found that self-monitoring their blood pressure added to their anxieties. They cautioned that it might not be suitable or desirable for all pregnant women. Having the option and choice to monitor at home, as well as in appointments, was important to some. Josie said: “I think anything that makes a woman feel more relaxed about the pregnancy is a good thing, you know. And taking sort of control of their own symptoms and own feelings, I think is a good thing personally”
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