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Learning disability and pregnancy- Easy Read

We chatted to nine women with learning disability about their pregnancy and giving birth.  

Some women lived with their partners and children. One woman lived with her mother and her son. 

Other women signed off their babies to their families. Children of some women were taken into care. Some women did not mind being contacted by social services.  Some women did not like being contacted by the social services.
 
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Tina talked about proving social services ‘wrong’ because she didn’t want her children going into care.

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Age at interview: 33
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And so I proved them all wrong, because at the end of the day, you know, I don’t want my child put into care at all, so, because I know that’s what a lot of, happened to people like me and I’m going prove everybody wrong because I don’t want all that to happen. And at the end of the day they don’t have understanding and there’s not the support in place at all. So you have to do it all yourself. So, I, that’s what I’ve done, so they’re not, and they, the understanding of having problems is it’s all mental, you’re all, you’re all in, in the head, you’re not there, you’re not right. So that’s how we’re going to deal with it [laughs]. 
Some women with learning disability said that midwives treated them different from other women because of their disability.

One woman said “a lot of people within midwives and health visitors, they just look at you and they make assumptions”.

Some women said the midwives were kind and supportive.  Jennifer said that her midwife was “really nice and supportive” when she was pregnant.

“I presumed going to like a different hospital for being pregnant” would be the same.

Some women said they did not have enough information during their pregnancy. Some women said they did not have choices.  Jennifer said “we just felt like we were invisible really, you know, no need for us to even be there because they’d already made the decision [to have a caesarian]”.
 

Amanda wishes the background to the safeguarding alert had been explained to her so she understood it better.

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Age at interview: 35
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I think it might have been to do with because we’ve both got disabilities. And, but when we were, when we were explained it to by the midwi-, by one of the health visitors, we understood a little bit more. And it was at the time that Baby P had been beaten or whatever. And I think if we were given, if they made us understand properly, we would have understood from the beginning if they told us the reasons why. And they didn’t. They just obviously assumed obviously. And we know we’ve had to, we’ve had, for the last 8 months we’ve had to prove ourselves really. And we shouldn’t have had to. The children’s social worker never turned up to any of the TAF meetings. So it was handed over to the person at Sure Start to take over the TAF meetings. So we all agreed that we don’t need to have any more, any more now. Because [Ruby’s] coming up to nearly a year in September and if they had any more worries they would have let children’s services know by now. 
 
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Jen describes how she wasn’t told about parenting classes when she was pregnant.

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Age at interview: 30
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I didn’t have a very good experience, being pregnant. I didn’t really know anything about it at all. I wasn’t given any information from the midwives or anything about antenatal classes or parenting classes or anything, so I wasn’t really prepared for the pregnancy. And I didn’t really have enough help and support to help understand it.

Oh, so you got, so, when you got pregnant, did you go to your doctor?

Yeah, I went to the doctors and had a midwife assigned to me and I kept asking about classes and that and they wouldn’t let me know about any classes.

Did they say why they didn’t let you know?

No, eventually eventually, just said that there was a class but that was when I was eight months pregnant, so I went through a whole, that was a parenting class though, so I went through the whole pregnancy not really knowing what to do because I wasn’t getting information off the doctors or the midwives. 

Why do you think they didn’t give you any information?

Probably because like I’ve got a disability, they probably thought I wouldn’t understand it.

So how much did you, I mean if you, if the midwife didn’t give you information, how did you find out stuff?

So I didn’t. I just kept looking on the NHS website and that to like find out the information and that, like how to prepare for the birth, how to prepare for like when you have the baby and that, so most of my information just came from the NHS website just looking at the pregnancy facts on there. Yeah.

And was that quite accessible for you?

It’s like some of it was and it was hard to understand, some it was okay to like understand and see what was going on and I tried to have a look for classes myself but I couldn’t find any.
 

The midwives decided that Jen should have a caesarian and she feels she wasn’t listened to.

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Age at interview: 30
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Well, in the end, they said, “Oh you have to have a planned caesarean.” And then my partner backed me up and, because he could see I was about to cry, when he said that. And then he said, “Well, why does she have to have that for, you know? She’s quite capable of having a natural birth.” He went, “Well, that’s what we’ve decided.” And they wouldn’t explain why. So I had to have a planned caesarean in the week before the due date and when I was told that, I was like, I just shut myself off from the world. I wouldn’t speak to anyone. So I was just really angry because I just thought so that’s what they wanted all along, you know. And then and then wouldn’t, when he was born, I only see him for four minutes, well, me and my partner only saw him for two minutes and they they took him and we didn’t see him for two hours. And we kept asking, “Where’s where’s he, where has he gone?” And the midwives wouldn’t tell us where they took him and so that distressed me a lot because I just didn’t know where my son was.

And then I think it was about two hours after, three hours after I had him, they brought him back to the ward and then they told us that he was in the special care ward because he needed his lungs looking at. And I asked them why they couldn’t just tell us that’s where they took and they just walked away. 
Some women said midwives were very supportive. Amanda said the Team Around the Family was very helpful. Amanda said the easy read information was very good.
 
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It was hard giving birth but the midwives encouraged Tina to push.

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Age at interview: 33
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And what were the staff like when you were actually in labour?

They were really quite supportive, they were. They were, they was very encouraging, so I didn’t have any problem there. I was on a, I wasn’t allowed, I was on a specific ward because a proper labour ward with, full of doctors and all around me because of my epilepsy and they didn’t want anything to go wrong while I was giving birth, and they, there was a lot of encouragement. And, because I, at one point I just, just wanted to stop pushing and they, you can, and they said, “The head is nearly here, come on, push, just one more push and then that will…”. It did, it happened. But it was just [laughs] it was hard [laughs]. 
 

Amanda met the Team Around the Family Team when she was a few months pregnant.

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Age at interview: 35
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And you had this, the Team Around the Family. At what point did that, did you meet them?

The first one I think when I was a few months in to my pregnancy. I’m not sure how many months it was. But it might have been 5, 6 months maybe. That’s when the health visitor started to come in as well. And they were really, really helpful. What my, what my Sure Start did do was they actually gave us this easy-read booklet, this easy-read file of from 0 to 3. About, you know, how to bottle-feed, how you change the nappy and, and things like that. And we found that really, really useful. And it’s the only book that they’ve got so they, actually done copies for us. And I’ve still got that. It seems to be really useful. But once you get the knack of things, you know how to do it and you don’t need anything else [laugh].
Some women said that midwives and doctors were worried if the women with learning disability were able to look after their babies. Some woman said it was upsetting to see midwives watching you all the time.
 

Midwives were told by social services to watch Jen look after her baby in hospital.

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Age at interview: 30
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Did anyone sort of help you, did you get, did the midwives help you look after teach you how to look after a baby?

Yeah, well, they were told by social services they had to help us so again, we were being treated differently because every time he needed his nappy done or his bottle done, we weren’t allowed to do anything unless the midwife was supervising us. So that angered me because I was thinking why, why are we being treated differently for, you know, we’re quite capable of like learning how to look after our son without having being watching all the time.

And then they supervised you for that whole week, were you?

[mm]

Or did they ease off?

No, the whole week I was supervised. Every time he needed something and I couldn’t find the midwife, I had to press the, you know, the bell by the bed, I had to press that. I wasn’t allowed to do anything unless the midwife was there.
 

Jen says ‘they just kept trying to force me into a mother and baby unit’.

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Age at interview: 30
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No, well, they were trying to get me into a mother and baby unit, you know, and again it’s going back onto not having any experience, not understanding, so oh, ‘you can’t cope looking after the baby’. ‘You won’t be able to understand how to look after it’ and, you know, ‘you can’t cope’ and all of that sort of thing. So again, it’s just, basically, people aren’t seeing past the learning disability. Okay. I’ve got a learning disability but there’s no reason for you to judge me on whether I can understand how to look after a baby or not when I’ve been asking for classes and asking for information for how and they just kept trying to force me into a mother and baby unit.
 

Amanda describes when a midwife raised a safeguarding alert about her.

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Age at interview: 35
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Yes, so on the Sunday night because my daughter, wasn’t very well with upset stomach from having two lots of 60 mil of milk, one of the only midwife that was on that night had written in my book that I was going to shake my baby. So then on the Monday morning, the named midwife who worked between children’s services and the midwifery in the hospital put in for my daughter to have a children’s social worker *which they had to get* because of safeguarding. And, I turned round to them and I said there was no way in heaven or hell would I ever harm my daughter. [I told the named midwife she had to talk to my support worker who was coming at lunchtime.]
Some women said they are not happy when midwives talked to them about safeguarding. One woman had to sign her son to her mother in law. A daughter of another woman was taking from her to live with the Dad. Jennifer said” technically hadn’t had the experience to be a mum yet’.
 

Wasn’t allowed to take her child home

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Age at interview: 30
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I wasn’t treated, I was, you know, I wasn’t treated fairly as, as a normal mother would. Basically I wasn’t allowed to take my child out of the hospital. I wasn’t allowed to take my child home. I wasn’t allowed to be with my child on my own because the nurses and doctors thought that I was at risk of harm to my child. And I found that, you know, other mothers don’t really experience this issues. That they take their children home after a few days and they get to live their normal life with their children. But for me as a first-time parent I didn’t experience this. I think it was quite the opposite as an experience.
 

Jen “signed” her baby into her husband’s parents care on her birthday.

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Age at interview: 30
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Yeah, well, I left hospital on my birthday and well, on the Monday, I remember it was a Monday because that that’s my worst birthday ever, so on the Monday we had we had the meeting with social services, one of the midwives, I think it was the head midwife, and my husband and his parents. And nothing was said about having to sign my son over to his parents or nothing. They were just discussing how we were coping in the hospital. 

And what the midwife, she was aware of us bringing him home and then, on the day I was being discharged on my birthday, we were asked to go into the office and the social worker was there and we didn’t even know the social worker was coming and he said, “The only way you’re going to be able to be discharged is if you sign him into your husband’s parent’s care.” So that was my worst birthday ever. I don’t like my birthday now because just feels as though I was forced to sign my son away and I feel guilty about it, in a way, because like I didn’t have the courage to like stand up for anything because so much happened, I was confused about everything.
 

Jen forgot she was a mum when she wasn’t allowed to look after her son.

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Age at interview: 30
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Can you, you’d given birth, you’d had your baby, can you remember what it felt like to be a mum in that week?

I can’t, no, because I technically I haven’t yet had the experience to be a mum. I mean now that that I’m living away from like my husband and his parents, and I and I see my son and have regular contact, I’m starting to feel like a mum but, in the past, I kept forgetting I was a mum because I wasn’t able to do anything with him. Like as soon as soon as he was out of the hospital, I wasn’t allowed to change him, I wasn’t allowed to do feeding, dress him, take him outside. All the normal mum things, I wasn’t allowed to do. So I just kept forgetting I was a mum because I couldn’t look after my son.
One pregnant woman said her midwife gave her a Real Care Baby to look after for three days. Some women said the family and friends supports were very useful.  A woman asked her friend to help her with understanding some information. Another woman asked her sister to help her with understanding some information.
 

Stacey describes looking after a Real Care Baby

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Age at interview: 25
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A Real Care Baby. None of the women we've spoken to so far have had this experience.

I've done something like this at college, just for a day, so.

Can you tell us about it, because I'm –

It's, it's much heavier than a baby.

Is it?

Yeah. And you can't bath it, because otherwise –

You'll break it?

Oh, you get electrocuted. Because it's got electric in it. You can't stick it in a fridge, like someone - like someone - [Name] said that someone that she went to school with did it, and put it in the fridge. And then it stopped working, so.

Oh dear.

You've got to attend to its needs.

So you did it at college before you got pregnant?

Yeah, I did it at college, in the last year.

And then you had it for three days?

Yeah.

And you were here on your own?

Yeah.

Right. So how did you know what to do?

It just cries, and then you - you've just got to use this little tag thing near its belly button and you've just got to try and see if it needs rocking, feeding, or changing.

Okay. And then when it stops crying –

Yeah, it makes like a calling sound.

And then you can put the baby down?

Yeah [laugh].
 
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G couldn’t understand some of the words in the information from the midwife but a friend explained it to her.

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Age at interview: 37
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When I got back, the midwife came out the same day. And at the time I didn't realise I knew the midwife. And she was very pleased. Give me quite a lot of information. But I went round to my friend's house with the paperwork, and she took it through the paperwork with me. I just took that information.

Right. Was it - so there's no easy read version, or anything like that?

No. It was sort of some words that I couldn't understand. So I did sort of ring my friend and said, "Ooh, can I come round?" that night, "Because I've got paperwork that I don't understand." And she said, "Yeah, bring it round and I'll go through with you.”
 

Stacey uses Google to find information or asks the doctor to write things down so she can ask her family to help her to understand it.

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Age at interview: 25
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And has she given you anything like in writing? Any information about being pregnant, or?

I normally just look online. On Google, and just find out, find out myself.

What sort of sites would you use?

Just any. Sometimes the NHS, just depends what comes up first.

Is there any site in particular that you've found useful?

No.

And have they all been accessible enough, like with easy-read versions of –

Yeah. Or sometimes I normally ask my sister or my Mum, because obviously my sister's been pregnant. Well, she's got a 3 year old son now, so she knows more about it.

Would you want them to write down something for you to take away and read?

Yeah, they - yeah, sometimes. Like if - because of, well. Sometimes like when there's something at the doctors, they normally write it on a bit of paper and then I normally give it to Mum and she, she tells me it. She explains it to me, because she's a nurse so she understands most things. So it's easier that way.
Some women with learning disability said the midwives helped them to care for their babies.

Some women said that midwives need more training to help women with learning disability.
 

More training in learning disability is needed so that people are not mistreated or misjudged.

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Age at interview: 30
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I think I think midwives should be trained in how to deal with people with learning disabilities because I just feel as though, when someone hears the word disabled or learning disability, people don’t understand what it is and just think you’re stupid or label you and, you know, just treat you as though you don’t exist. So I’d like people to be more aware and learn and train about what a learning disability is so we don’t get mistreated and misjudged.
 

More training in learning disability is needed and “then you’ll do fine”, says Amanda.

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Age at interview: 35
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Is there anything you’d, is there anything you’d say if you, to any health, to a midwife watching this?

Yeah. Make sure you’ve had learning disability training so you know how to handle delicately people with learning disabilities. Because if they, if they’ve had problems you don’t know about and you do something wrong, you could be in trouble. So make sure you get all the facts about that person and you’ve had the proper necessary training round learning disability. Then you’ll do fine.
 

“Just talk to me more about pregnancy”, says Stacey.

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Age at interview: 25
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If you could wave a magic wand, with that midwife in [Town], and actually - "Okay, I want you to be like this." What would it be?

Just be more un-bossy, un-nosey. Just talk to me more about pregnancy. And actually smile [laugh].

Why is she –

She just doesn't smile.


Added to the site May 2017.
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