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.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.
- 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.
- 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.
- 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.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.
Pre-eclampsia could have a big emotional impact, both at the time of the illness
. 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”.
- 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”