Support in the community

We asked women what support they received in the community once they were discharged from hospital. Their experiences were varied. Some felt the support from their local GP and health visitors was excellent, but others felt they would have liked more support, after such a traumatic time in hospital.
Examples of good care
Several women felt they had very good support and care after they were discharged from the hospital. Karen had a haemorrhage (heavy uncontrolled bleeding) and hysterectomy. Midwives and health visitors came round to see her and her GP was in touch. ‘I felt like I had a lot of support’. Knowing that support from their GP was available made a real difference to several women.

Her GP was in constant contact and it made a real difference to Naomi knowing there was going to…

Age at interview 49

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Tell me a bit about the GP and why she’s been so..?

She has been in constant contact with us. She if I do need to have a chat and things I can go and I speak her. She reassures me if things, or she’ll check, I might say can you check this out or whatever. I trust her 101 per cent. So she’s just there, they’re just available. There’s three littleit’s a doctor’s surgery. They have three GP’s. Everybody knows everybody. And, it’s fab in that respect. it’s not a big one where you’reIts personal, it’s like going back to the fifties really or something it’s nice. it’s not particularly, you know, all up to date and all guns blazing, but that’s not what we need as a family. We need someone that knows who we are and I can say x y and z and they know what it’s about and that’s what I like. So my GP, I mean when I was in hospital they would ring up for updates and midwives and stuff would come and say, Oh you’re GP’s been on the phone. And she sends her love. Hopes you’re okay You know, and that’s made it, the feeling that when you get out there is a support out there. Things went wrong. And when I’ve gone there and gone, Oh You know, this has happened. She’s tried to help me. It could be diarrhoea tablets, or anti diarrhoea or if I’m constipated, or if I’m not. Everything’s all, she tried to sort all that out with me as well. So I’ve been very, very lucky that they, and they communicate and support me around that. So it’s been really, really good.

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Hannah recently found a GP who had transformed her health in helping her with her ongoing side…

Age at interview 49

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I’ve only found her recently though. I’ve got a, my GP clinic, you don’t see the same GP all the time. There’s like ten of them almost, and you see whoever, you know, if you want an appointment Wednesday at eight, you’ll get whoever is free. But I’ve just, in the last six months, found a GP here whose amazing and who has like transformed my health actually.

I went in to her and told her what had happened, and what I was experiencing. She was like, oh well, are you not on this, and this, this. And I said, No, no one suggested that And so I’m on different medication, or some medication and it has made a massive difference. A massive difference. I was in constant pain before and now it’s completely gone. So that’s been amazing.

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Kerry had panic attacks and anxiety after her haemorrhage and her GP has been very patient in…

Age at interview 49

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And has the GP been helpful?

He’s brilliant my doctor, he’s fantastic. He is.

Tell me a little bit about how he’s helped.

Well I actually, since these panic attacks have started like, I’m cooking things up in my head. I used to think that I was ill all the time. Obviously I used to go about my periods regular. And then I thought I found a lump in my breast, which was phantom, and I went to the doctors about the lump, and as I walked in, as the buzzer buzzed I thought, my legs went to jelly, and I felt a panic attack coming on. I finally got to the doctor’s room and I just, I had the biggest panic attack I’ve had in front of him. And I don’t know, he didn’t know obviously know I was having a panic attack. I think he thought I was having an anxiety, well asthma attack. I don’t know what he thought, but he obviously calmed me down and when I kind of explained what had been going on, straight away. He wanted to refer me for counselling, but I was already having it obviously. He put me on the Cipralax. He’s seen me every four weeks. He put me in touch with support groups and things like that. And he was really patient, because I did keep going back. I thought I had illness after illness. Like all this was my periods. I always thought I was going to haemorrhaging and as a human I’d get fed up, I was in there a lot, but he was so patient. And brilliant. Yes.

Yes, I go less. He kind of, the words that he used did calm me down a lot. He said, I’ll never forget what he said to me, he said, it’s like if you have a headache it doesn’t automatically mean it’s a brain tumour. It can be tiredness. It can be stress. It can just be a headache. It doesn’t always mean that it’s the worst of everything. You know, there’s always two or three things, symptoms that you experience and it doesn’t always mean that it’s something’s that’s going to kill you Because I was so frightened that I was going to die after that. I always thought I had something that was life threatening.

And are you believing that a bit more now?

Yes. If I get a headache or a pain in my breast it’s just one of them things, people get them, it doesn’t mean you’re dying and that, I kind of tell myself what he said, it can be a number of things, it doesn’t mean it’s something so serious. And it does settle me down. That along with the counselling I was getting for my breathing techniques and things and yes, it helped a lot.

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Lisa was given fantastic care by her local GP after her haemorrhage and hysterectomy but…

Age at interview 49

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Lisa’ He’s fantastic. He visited me every day when I got out of hospital. Here at the house. He’s just been amazing. And I, one day we’ll pay him back, because he’s gone beyond the call of duty, without a doubt. Well they all have at the surgery actually. They’ve all been amazing. But it’s hard getting out, and the first time you have to go up to the surgery on foot, because everybody knows and you go in and they go, Hi. How are you doing So oh
Yes, luckily that’s subsiding now. All the people in the reception area would be like [whispering noises] they’d all be looking and they’d say, Oh let me see the baby Oh. And you get that when you go to playgroup. This is a small village, really small. So everybody in this area knows that I’m the one that nearly died in childbirth. And that’s really hard.

Partner’ it’s so small that actually knew what happened to her before we got home. And that’s a fact.

Lisa’ He was going up the local shop to buy provisions and they were going, How is she And he was like, How do you know You know, and it was like really, really strange. But that’s a small village for you. But it was concern. It wasn’t nosiness, it really wasn’t nosiness. They were really concerned. We had cards from everybody. And flowers delivered and everybody was really worried. Because they all knew us a bit before. Obviously we hadn’t lived here long. We’d only been her eight, nine months before I gave birth. So, but everybody knew us as the new couple and, they were all really, really shocked when they found out what had happened and sort of seeing me going up and down in a wheelchair and stuff. So they were all really worried.

So it was nice to have that concern from everybody, but it was also really annoying because you want to get away from it and just move on. Forget about it, and luckily I can say now that it’s getting there now. People don’t talk about it anymore and people don’t cock their heads to the side and go, How are you doing And I’d say, Oh shut up You know, it’s just oh God, I’m fine, I was fine until you asked me like that. Oh dear.

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Lisa said her GP surgery had been ‘amazing’ and ‘I would never have got through this without them.’
Women who had deep vein thrombosis (DVT- the formation of a blood clot inside a blood vessel) or pulmonary embolism (PE- a blood clot in the main artery of the lung) after birth were in regular contact with their GP as they were managing their anti-coagulant drugs, which they needed to take for several months. Cate saw a lot of the practice nurse at her GP surgery in the few months after her PE as they were managing her warfarin and INR levels (a blood test that monitors the effectiveness of the drug). Clare had a DVT in her leg after the birth of her second child. She would have liked more support at home after she was discharged, as physically managing living in the house with a swollen, painful leg and a newborn and toddler was very difficult. However her GP was very supportive, reassuring her that it was safe to take the drugs while continuing to breastfeed.

Clare was treated by her GP surgery and found it very difficult to get the balance right between…

Age at interview 49

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Well after the day in the hospital I was basically treated from my GP’s surgery. I had no more contact with the hospital after that. Which at the time I was so relieved because my fear was being admitted and I thought I can’t be admitted because I can’t be apart from my baby. But having said that in some ways physically it would have been a hell of a lot easier in hospital. It was so difficult being at home with stairs and everything. And being an OT all I could see was all the adaptive equipment that I really needed, you know, I wish I could have prescribed myself all sorts of things. Butso I would then goI was treated from the GP’s surgery and I would go in every few days initially so they could check my INR because they were trying to get the level of warfarin right. And I’d mainly see one of the practice nurses. So it was really me guiding my own treatment a lot of the time, as I felt able to do things. But what I found very difficult was getting the balance right between doing enough activity to try and get my circulation and things going. Because that’s what has to happen to clear the blood clot ultimately, but not doing too much to set myself back or to cause an embolism I guess. So it was very hard knowing if I’d done too much, too much, you know, if something was enough oryou know, it was very difficult, and it was really me guiding myself about how much I felt able to do.

And there were probably days when I did too much, but then once you’ve got two children at home there’s no opportunity or very little opportunity to rest. And it was very hard for me to rely on other people a lot. Because I wasn’t used to doing that. So yes, there was no one really telling me what I should or shouldn’t be doing. It was just as the pain allowed really.

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Clare’s GP was very reassuring and supportive in finding out if it was safe to breastfeed while…

Age at interview 49

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Yes. Well the, yes, the doctor in the hospital made an appointment for me, said I needed to go and see the GP in a couple of days and probably to get my INR tested and start me on the Warfarin. I think that was the idea and find outshe said, And speak to them about whether can breastfeed on warfarin

We are very lucky we do have a very, very good GP practice actually. it’s a rural practice. it’s just outside [town]. And the GP I saw, she was brilliant actually. I know she’s got young children of her own. So I don’t know whether that helped in just me feeling I could relate to her a bit. But she was very sympathetic and she reallyShe was much less alarming than I found the doctor in the hospital. I found the doctor in the hospital scared me quite a lot. Which I knew it was a serious condition, so I didn’t really need any more scaring. And of course I said to her. She sort of said, How are you? I’m going now. Are there any further questions And she, I said, Actually can you tell me how big the clot is And so she went to get my notes, and had a look, and she said, Look it is big. I don’t mince my words with my patients. This is very serious. it’s a veryI’ve seen bigger clots, but it’s a big clot

So I found her quite alarming. I found the GP much more comforting and reassuring to be honest. And like I said it’s a very good practice. You can get appointments in a day, you know, if you need it. So we’re very, very lucky and I know a lot of people don’t have that.

But I didn’t see her very much. It was mainly my appointments were with the nurse. Just to go and get my bloods done and check the INR. So I didn’t see a doctor very often.

Initially I was going every few days. Then it was weekly. It was weekly for a long time, until it went to may be fortnightly. Because my INR levels kept changing all the time. They were, they weren’t very stable.

And do you feel like you saw enough of the doctors? Did you get enough medical support?

I suppose so. Because I had my post natal check as well around the time and I asked questions then. I saw one of the different GP’s. There’s a couple of female GP’s and I did make an appointment further down the line because I wanted to understand how warfarin worked. Not in the minute detail, but I remember being told in hospital you’ll be on it for three to six months and I thought, well how do they know if the clots cleared. You know, how can they say three months, or six months, how will they know how it’s progressing.

So I made an appointment to talk about it, and what I came to understand was, that it’s not about the clot you’ve had it’s about the risk of future clots. So the clot you’ve had, the fast acting anticoagulant has stopped that, and your body was clearing it. it’s really being on it so that, to reduce or minimise the risk of any further clot. So because they feel my clot was down to pregnancy I was low risk to have another clot probably, once the hormone levels had settled down.

Was it the GP that ultimately found out for you?

She, bless her, she was very good. She spoke to a pharmacist for me, and she also spoke to a paediatrician for me as well. And the health visitors located, they had a book aboutMother’s Milk and Medicine or something it was called like that, but basically breast feeding and medication. So they located to that and looked in it for me as well. So lucky they both came up to me with the same

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Needing more support
However, some women felt that there was very little support for them after they came out of hospital. Several were surprised that their GP seemed to have no idea what had happened to them and thought there was a lack of communication between the hospital and the GP surgery. Alex was in hospital for weeks with grade 4 placenta praevia (placenta covering the cervix). Her GP was very supportive once she knew what had happened, but ‘[the GP] felt slightly put out that she hadn’t been told’. Hana had obstetric cholestasis (a liver problem causing a persistent itch) just before her twins were delivered, and her GP ‘had no idea whatsoever’ what had happened to her. Both Natalie and Michelle would have liked more support from the GP or health visitors after they were discharged.
Rob said their GP was ‘worse than useless’ and as a family they were left with little support (see ‘Father’s /partner’s emotional recovery‘). Lack of support may affect how women, their partners and their families recover. Sophie and Tom struggled as a family after Sophie had a PE and haemorrhage.
People worried not just about their physical health but about practical issues of caring for a baby while they were recovering from their illness or surgery.

Alison was very worried about how she would cope once she was discharged from hospital. She…

Age at interview 49

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And, I also think thatthe hospital knew that I was anxious about how I would cope when I got home. And I actually think it would be helpful if people saidtalk to you about, your, exactly about your specific circumstances rather than just a general, Have you got family and friends who might be able to help you out Be more specific and ask more specific questions about, Okay so when’s your husband going back to work?’ Or you know, When is somebody around with you full time?’ And maybe then get somebody if it’s not the midwife from the hospital or doctors in the hospital, get somebody out in the community to come, like the community midwives or health visitors to actually come back and have a conversation with you as a Mother. Not, with no, no intention to kind of check how your child is doing, but actually talk to you about how you’re feeling physically. What’s the next milestone for you in terms of your husband going back to work in three days or whatever. Okay so realistically what can you do now?’ What can we do to support you and help you?’ Because I was able to do that, because I stopped myself from getting worked up about it at a point where it wasn’t actually relevant and when it became relevant, I was actually stronger than I’d expected to be. But some people might not be like that. They might not have that will power or whatever it is that stops them from fretting about it from the point that they find out what’s happened to them, to the point at which whatever it is, the next stage happens to them. And it would be, I think it would be helpful, for somebody to just sit down with them and say, Well we’ll talk to you again in a week, two weeks or whatever and then let’s figure out what, what you can specifically do. Find out about the lay out of your house. Because sometimes, it just takes someone to go, Well you don’t need to come downstairs. You can stay inWhy don’t you just get your husband to take a kettle, and a toaster, and this, that and the other upstairs and you’ve got things upstairs and you can just spend the day upstairs rather than having to carry a baby and the cot, and everything else downstairs. Just really go through it on a very practical level rather than. It just didn’t feel that that wasThat was something I feel quite strongly about but I don’t know who should provide that support butthat was missing really.

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Some women felt there was so much focus on the baby that their own symptoms or support needs got overlooked. Belinda had appendicitis during her pregnancy, and said, ‘You just felt you’d kind of been ignored. The most important thing was the baby.’ Ciara developed septicaemia (blood poisoning) because part of her placenta was left behind in her womb after the birth. She felt it took a long time to diagnose because there was too much focus on the baby, and not enough on the mother.

Ciara felt her symptoms (abdominal pain) were not listened to by midwives. She was admitted to…

Age at interview 49

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In those early hours after the birth?

Hm. There needs to be equal focus on Mother and baby by the community midwife. There was too much focus solely on, on [first daughter] failure to gain weight in those early days and that was obviously important, but it was a bit of a red herring because I think if you look at something sort of holistically and you take it in context, you wonder why this is happening and the Mother’s complaining of abdominal pains, you know, it’s really so obvious, you know, that its likely to be something to do with her that’s causing this, this problem. don’t view the baby and the Mother in isolation and don’t forget about the Mum when there are problems with the baby, because if she’s complaining of, you know, she needs to be listened to as well.

I think it’s really important for midwives not to assume that if someone is complaining of pain, it’s because they’re, they’re weak or their pain threshold is low and I hope I, it’s obviously that my pain threshold’s not significantly lower than others because I had a pain free delivery. So if I’m complaining about pain, that needs to be listened to. So I think there’s a sort of tendency to think that someone’s a bit of a whinger if they’re complaining about pain before, during or after and just assuming that, that’s par for the course with childbirth, but actually listen to what they’re saying and put it in context. If they’re just delivered without pain relief then, and then are asking for morphine, surely the alarm bells should be ringing. Yes.

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Sometimes women said they were good at putting on a brave face and this might have contributed to them not getting the support they needed. Joanna said her GP was very supportive but she often put on a front when seeing him, so perhaps he wasn’t aware how much the death of her baby had affected her. Ciara and Michelle were asked to complete the Edinburgh Post Natal Depression Scale (a set of questions designed to see if a mother may have depression) with their health visitor, but Michelle said it was easy to know what the ‘right’ answers were to make it sound as though she was doing fine, ‘it’s so easy to lie on that, isn’t it?’

Last reviewed April 2016.

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Haemorrhage (heavy uncontrolled bleeding)

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