Breastfeeding And Healthcare Experiences

Breastfeeding and Healthcare Awareness – Q&A on preliminary results

Image shared via Flicker, CC licence 2.0 credit: Harald Groven

Breastfeeding and Health Care Experiences are a group of 440 mothers, all of whom breastfeed their children; approximately half of the group are health care professionals (HCPs) or breastfeeding peer supporters and all are citizen scientists with Parenting Science Gang.

The group worked together to design a study on breastfeeding and health care experiences in collaboration with Dr Gavin Brookes of Lancaster University. A small group then analysed the 700+ responses to the survey using a technique called Corpus Linguistics.

In this Q&A, the small team of analysts shared their preliminary results with the Breastfeeding and Healthcare Experiences  group. Five volunteer analysts looked at the data: Kate, Rachel, Serena, Danielle and Liddie.

Question for the analysts:

What were the main themes you found in the mothers’ stories?

Rachel: The main things I noticed were that in the “make or break” of getting through the early days to establish breastfeeding, it took one really positive interaction to “make” it work, but there were a lot of very small interactions that had the potential to “break” it.

So the positive ones were mostly one person who took the time to listen to mum and whatever problems she was having and then had the understanding and skill to help her get through it.

It seems like those very early days in particular are generally just hard, and a very minor/“insignificant” comment from someone who’s not supportive in any of a large number of ways has the potential to shatter the very fragile confidence that mums have.

PSG A: Yes, those “throw away” comments can be so hurtful, undermining, and never forgotten.

Rachel: That came through a lot. There were a lot of very small interactions that had stayed with mums enough to warrant mention in the stories. I think Gavin was surprised about that as he’d assumed that the stories would just be about “big” interactions.

Kate: There were lots of stories with very similar issues such as latch problems, tongue tie and weight loss. The advice they received varied enormously and may issues lasted for weeks and sometimes months. Like Rachel said it was often one positive that made the difference

PSG J: This rings true for my experience.

PSG Q: A friend said a couple of midwives stood outside her cubicle with a trainee and said “that’s what a tongue tie looks like” but not one of them spoke to her about it – despite them having a tongue tie clinic in the hospital, she had it cut privately a couple of weeks later.

Sophia Collins (PSG director): Can I just say, I’m so impressed by what you lot have achieved. And it’s really great to see solid data to back up things that I’ve thought, from hanging out in breastfeeding groups. And also some new stuff I hadn’t really thought about.

PSG J: definitely agree, it’s a brilliant study.


Question for group members:

Does that chime with people here? 

If you had issues with breastfeeding – did you see lots of people before seeing one person who helped solve the issue?

PSG J: Yep, that was my experience.

PSG B: Yes, if I hadn’t had my one positive experience then I might have given up as it was so hard and I felt in a dark place

I saw midwives, including my own, before seeing a cover one who helped

PSG C: That makes sense, having lots of comments from everyone vs the specialist coming to see me and to listen and know they were there for another 4 weeks

PSG D: A case of too many cooks of varying qualities increases the potential for a questionable soup.

I had quite a number of what amounted to unhelpful ‘helping’

PSG E: Oh bloody hell, yes.

PSG F: Thankful that my main midwife was my positive voice. I wouldn’t have made it without her help

PSG H: My midwife was amazing. Never for a second made me feel like a couldn’t do it. ❤️

PSG G: Lots of people involved all giving slightly different and sometimes conflicting advice!

PSG I: Exactly the same for me!

PSG A: Well, twenty years ago there weren’t “lots of breastfeeding people”, breastfeeding wasn’t even a required subject for midwives! But when I finally broke down and phoned up La Leche League (LLL), the LLL Leader was the first person to actually listen to me, the first person who didn’t make me feel that I had done everything wrong.
And she was also the ONLY person who knew how to help with latch/ positioning etc with a tongue-tied baby.

PSG K: Yes! I saw loads of people and finally a breastfeeding peer supporter when my daughter was 8 weeks and we didn’t look back!

PSG L: I did see breastfeeding specialist at the hospital because we’re readmitted to hospital. But even at hospital they missed my sons tongue tie. Later on a health visitor referred us but the stress with my baby’s weight loss caused me to avoid many people because it wasn’t helping us. After 3 months (tongue tie sorted) everything got better.

PSG P: I had my sister, a peer supporter and 1 breast feeding mentor/hca who after I was readmitted for complications when I was suffering with PND and my little one had lost too much weight in the first week following my section. She spent time with me really reassured me and boosted my confidence after several others had told me to use formula for my babies own good etc, she was the only person who told me that my milk was likely delayed because of my section and reassured me that I could do it. She also spent time with me that day when my milk came in with a vengeance and helped me feel like I wasn’t a complete idiot for not knowing so much about it all.

That one HCA and her intervention at a really tough moment I think helped me to 100% stick with my decision to breastfeed and stay strong when those ‘throw away’ comments came at me. Honestly think I will be forever grateful to her for that. 16 months on and still feeding him and I thank her and my sister for that.

PSG B: I couldn’t even get through to a helpline during my dark night as it closed at midnight. Now they are threatening to close it at 10pm unless they start getting more calls.

PSG F: what one is that? The one I know of already closes at 9:30pm!

PSG O: yes it took 8 weeks for me to fully trust the lactation consultant after interactions I had in the first week

PSG B: The NCT run one, can’t remember it’s name

PSG D: There are 5 of them.

PSG C: ABM [Association of Breastfeeding Mothers]. BfN [Breastfeeding Network]. LLL [La Leche League], NCT [National Childcare Trust]. Who else?

PSG B: the Scottish one? I signed a petition about it last year

PSG E: I was given incorrect advice. Not throwaway comments, but totally incorrect advice and diagnoses. Could have been sorted easily with the correct training and more capacity in tongue tie clinic, plus correct onward referral pathway when tongue tie clinic couldn’t help

PSG M: That chimes with my experience

PSG E: So sad. Then we get people asking why breastfeeding figures are so low

PSG M: Indeed. In my experience there is lots of support but it’s mostly about encouragement rather than specialist expert help which is what is needed

Rachel: Yes – both are needed.


Question for group members:

Did you experience “off the cuff” comments from professionals in the early days of breastfeeding, that stuck with you?

PSG A: Fifty years later, my mother still remembered that comment “You’re starving your baby”

For me, just having the health visitor say “hmm, not gained a lot this week, we’ll weigh again next week before we talk about supplementing” after hospitalisation and a HUGE effort to build up milk supply – no recognition of what we had been through, certainly no knowledge of how to increase milk supply or feeding efficacy.

PSG E: What do you mean by off the cuff?

PSG A: I think it means casual, throw away comments – that mean little to the person saying them (but had a huge impact on the person hearing them)

Danielle: Not really advice but off-the-cuff remarks, like ‘well it’s (breastfeeding) not for everyone’ and ‘I didn’t bother, formula is just as good’.

PSG O: Yes so many.

PSG B: I was told to top up with formula to get weight up to avoid going back to hospital

PSG J: My health visitor spent most of the visit trying to convince me to quit breastfeeding because it hadn’t worked for her. She clearly had unresolved issues with her own experience. She didn’t even try to support me to tackle the difficulties we had.

PSG D: Health visitor telling me I’d given it a good go / tried enough. GP telling me it didn’t work for her in the end too. Midwife giving me formula, another midwife saying she shouldn’t have, and another telling me to keep topping up with formula without telling me it would have an impact on the supply I was desperate to build. Can’t remember the actual words but something to these effect. Over 5 years now and the pain still runs deep.

Oh my, the tears are rising to the surface; still too close to home…..

PSG X: Huge hugs

PSG D: Thanks. It catches me when I least expect. Kinda annoying. Makes me angry too. Oh well; hoping it gets better with time….

PSG X: You are directing your anger to make it better for other women- I am in awe of you but so saddened that you were treated like that. Always remember that it was not your fault. Ever. Get angry at the policy makers and make that difference.

PSG D: Thanks for your kind words. You’re so lovely! I fight on..

PSG L: Yes when we returned to hospital on the 4th day due to weight loss and 2 nights around 2 am I was told my milk is not sufficient enough for my baby and I should give him formula. After that experience I realised I had to make my mind up and not to get influenced by people. It’s important to find that strength in yourself and every new mother should reminded this.

PSG M: Yes. I went to so many support groups and breast feeding classes, lots of suggestions but none especially useful until I spent 90 mins with a specialist

PSG H: Midwife in the hospital seeming surprised that I was so upset that breastfeeding didn’t come as easily with second as it did with my first and another threatening tube feeding if I didn’t top up with formula. Gosh that makes me well up thinking about them.

PSG M: So sad.

PSG E: Not really off hand comments, no. Though midwives referring to the size of my breasts was not helpful….

Danielle: That counts as an unhelpful ‘off-hand’ comment as wasn’t necessary and made you question breastfeeding and breast size

PSG E: I didn’t question my breastfeeding. Thought it was a bit weird tbh!!! I now know it was all bollocks.

All HCPs should keep personal opinions to themselves. If they don’t know something, don’t say anything. In any other area a HCP knows not to comment if they don’t know. It’s truly shocking.

PSG Q: A look & a snort from a health visitor when I told her my little girl had recently had her tie cut. I had a really good health visitor every time after this, but that snort still stays with me.


Question for the analysts:

Did you find anything that surprised you?

Kate: I think just some of the stories were really heart-breaking especially the ones that had been suffering for months and seen so many different people but had such a determination to succeed.

Serena: Another surprise was the lack of questioning, especially for women going to GPs after a few months of having a child. At no point does the question get asked by the GP, it’s always the mother that added that they were feeding.

Danielle: I only noticed this week that our hospital prescription forms have a question on breastfeeding at the top next to allergies. I never see it completed!

PSG AC: That’s interesting. Do you mean, the question isn’t getting asked at all?

Danielle: Yup. Unless the mother is feeding the baby in the department (usually very young), and even then breastfeeding may be documented in the notes but not on the prescription

Rachel: that’s interesting! Our prescribing is all computerised and I don’t have access to it yet, but I wonder if it’s got that. The university stationary that we use for practice and exams definitely doesn’t!

 

PSG M: We had tongue tie. The main issue was that no one could spend long enough with me to diagnose it, even when we were admitted to the paediatric ward with feeding issues no one spent long enough with me to help. Eventually it was diagnosed at cut at 4 weeks old and I pumped, but it was too late by then to establish breastfeeding.

Rachel: Sadly that’s really common. There were quite a few stories of babies being readmitted for weight loss, or mums and babies staying in hospital because of issues, but not having access to any breastfeeding support while they were there.

PSG M: Yes we feel let down. I was left feeling it was my fault, that I just hadn’t tried hard enough. I needed specialist, expert help but staff are too overworked.

Rachel: Exactly. But if they’re not going to provide that support, why do they insist on you being in hospital? There’s often far better voluntary/peer support available in the community which can’t be accessed while you’re in hospital.

PSG M: She’d lost too much weight so we were hospitalised for that. They put us on a feeding plan that they could monitor etc. Formula topped up with any milk I’d pumped.

They weren’t interested in breastfeeding, just in getting her back up to weight again. I was the one who desperately, desperately wanted to breastfeed

Rachel: That happens a lot. Feeding plans are very popular especially with weight loss. But once they’ve decided what you should do and assuming you’re going to be compliant with it, there’s no further benefit to being in hospital. And there is, as you experienced, a lack of interest in supporting mums to breastfeed, so it’s very uncommon for any breastfeeding support to be given to find out why baby isn’t gaining weight.

Kate: I analysed “weight loss” and that seemed to be the go plan feed, pump and formula top up and you are right about the focus being on baby gaining weight rather than finding why the breastfeeding wasn’t working

PSG R: Here here – about the hospital thing; I had my daughter in a MLU and got admitted to hospital day 3 – apart from the checks of my daughter which where appropriate to rule out anything being wrong I felt we were bed blocking. Staff over run, I didn’t know the protocols of the hospital as hadn’t been there before – unfortunately our MLU doesn’t have overnight stays if it did (& they’re currently looking at reducing service) I think we would have cost less – plus I think I suffered PTSD after our experience of force feeding top-ups

Rachel: I think the main thing that surprised me was how similar a lot of the stories were. I would start reading and have to check that I hadn’t already done this one. The same themes came up again and again.

Sophia: This is quite amazing, isn’t it? That the same things are happening again and again, and causing problems again and again, but they still keep happening. And you’ve now documented it, maybe for the first time?

PSG T: It’s really good to see the same themes as it makes the results really strong, lending weight to the study.

PSG G: That’s really sad given the subject but good in terms of research as it tells you that you are onto something!

Rachel: I really hope that people will listen to us about this. Reading the stories was incredibly powerful for me, but we’ve got to try to find a way to get that across to the people that can make changes.

PSG A: #knowledgetransformation

Kate: It’s great as I feel it gave the mother’s voice. I found the same as Rachel, you could just see it coming. If there were problems in hospital that were never addressed as ‘the latch looks fine’ you kind of knew where it was heading once they were discharged and saw a different midwife or health visitor every visit

PSG R: Really sad that it’s the same stories but hopefully something can be done given the weight of evidence

PSG W: I had a rough start but insisted on breastfeeding and had a registered nurse the first day who helped me accomplish my goal. My daughter is still nursing at 4 years on Thursday this week. I ended up putting in a complaint at the hospital for some things but not for their help with breastfeeding.

PSG V: Are we able to quantify these recurring themes? e.g., 50 mums mentioned throwaway comments as impacting their breastfeeding journeys?


Question for the analysts:

Before the mothers got to the person who helped them, were there any common common themes in the less than helpful advice?

Kate: Mainly that bigger issues such as tongue tie, latch, ineffective transfer of milk were causing numerous other issues – painful feeding, bleeding and damaged nipples, crying and unsettled baby, mastitis etc but never addressed and conflicting advice and often opinions or just complete dismissal (latch looks fine)were being given for each symptom rather than listening to the mother.

Rachel: The phrase “latch looks fine” came up a terrifying number of times when baby wasn’t gaining weight or mum had cracked and bleeding nipples.

PSG G: This really resonates with me

PSG M: Me too

PSG Y: Sad that this is the case

PSG Z:  Thinking about the “latch looks fine” comment.
I saw a baby formula fed that was not gaining weight well and taking over an hour to finish a bottle despite a change of teats – was told to change the formula.
The poor baby had one of the most obvious tongue ties 🙁

It just goes to show how dismissive HCPs can be in general😔

Rachel: I think many people don’t realise that tongue tie can also affect bottle feeding. There seems to be a real aversion to snipping tongue tie in a lot of places, despite there being a lot of things it can affect in addition to breastfeeding. I don’t advocate unnecessary surgery, but the threshold for what makes it “necessary” is so incredibly variable!


Question for the analysts:

Did any of the themes relate to people trying to navigate the competencies of the different array of people giving out breastfeeding  support?

PSG O: I was just about to ask this as I hear a lot when I’m supporting mums in my clinic, this is different to how the midwife showed me. They don’t want to believe what I’m saying because the midwife is more senior

Rachel: Yes. There was a lot of conflicting advice given. And I think mums didn’t know who to trust/believe.

PSG AA: Right, so did you get a sense that people saw the differences between breastfeeding counsellors, peer supporters, IBCLCs (Lactation consultants), and then general HCPs with some breastfeeding training? Or that the lines were blurred because the midwife was responsible at that stage, and then health visitor at another etc?

PSG AB: This is an issue in my area imho – and we don’t have any NHS-funded IBCLCs. So it purely depends on chance whether a new mother ends up with someone with appropriate skills and experience to be able to really help 😒

PSG M: When you’re a new mum and someone in a uniform tells you something, you believe it. I didn’t really understand the difference in expertise and training.

Rachel: That was really variable. The non-specific phrase “breastfeeding support” was used a lot (in relation to NHS support) which didn’t specify the actual role of the person, and a lot of people also used the term “lactation consultant”, but didn’t necessarily appear to be referring to IBCLC. Others were more specific.

Kate: Sometimes it was blurry as some of the consultants they saw in hospital and in the community with the NHS were actually IBCLC qualified as well. (This was my experience my saviour was an NHS infant feeding coordinator but I know she is also a IBCLC). Every area also had different names for their specialist staff (and they were varying degrees of specialist). It was a minefield.

PSG C: I don’t know what half the terms are – my ABM peer support course is different to PSG F’s training but at similar level supposedly when I know she has covered more.

PSG G: My midwife, with my second when I said the first had posterior tongue tie said “I wouldn’t think to check for that” :s


Question for everyone:

Can I just ask? Is anyone else crying or trying not to cry?

It’s shocking how being messed around with breastfeeding really screws one – to put it crudely.

PSG H: Yep. I’m nearly 2 years past my youngests birth and it still upsets me.

PSG D: Solidarity. Wish it didn’t trigger me so much; over 5 years now. Love and healing to you

PSG E: No, because we managed to keep feeding. It’s something which still makes me angry though, 5 yrs later.

PSG D: So glad you made it. We did too; over 5 years now…

PSG AC: I’m OK with breastfeeding stuff, but I was lucky. It’s stuff about labour that gets me.

PSG D: Ha….anger is what comes up for me with that. Oh our mother lives…..wish it was pain free….emotional pain free….

PSG B: I got upset responding to the survey but feel more resilient now as trained to be a peer supporter which has been therapeutic

Danielle: I cried reading many of the stories and then I felt angry on behalf of all the failed mothers!

Rachel: Same.

PSG D: Massive salute to you and others who read the stories. Can’t imagine what a mess I’ll be at this time. Thanks for carrying this for the rest of us. Wishing you all good quality self care.

PSG R: Think it’s Amy Brown that has advocated counselling & support for those unable to achieve their breastfeeding  goals – but perhaps it should be for anyone that has had issues and find it distressing. I think I’ve managed to fully debrief thanks to our LLL meetings!

PSG D: Yeah. It’s so traumatising for so many. Can’t imagine what it would have been like if we didn’t make through it all. Glad you feel much better about what you went through.

PSG O: I have a very deep feeling of sadness right now. Hugs 🤗

Kate: Yes!! this is why I am so glad this was happening and I could do something constructive. Breastfeeding for me was a million times worse than the labour. Hugs to you.

PSG AD: Yes, even though we managed to continue for 4 and a half years, the tough early months, where I was very ill and beyond the help the NHS could provide, make me so sad

PSG D: 😥 I hear you and I feel you. Wishing you healing as I wish myself. The sadness and pain.goes so deep.


Question for the analysts:

Knowing the themes that came up again and again, what advice would you give to HCPs and breastfeeding supporters?

What should they keep in mind, for interactions with mothers?

PSG B: This is what I’m now interested in as a peer supporter.

Kate: Listen and listen again. It doesn’t matter what it looks like or what you think is going on listen to what he mother is saying. If the mother is saying feeding is painful and causing damage it is and she needs help even if the baby is gaining weight. While I was doing the analysis I found a story from an IBCLC that really struck a chord.

PSG L: I think it’s important to boost their confidence because many people with negative comments event probably within their family and friends. They should understand their sacrifice from their time is the best thing they can do for their baby. It’s not just “get back your life” nonsense. Baby is a commitment and they should be supported emotionally.

PSG D: Kate do you know why it struck a chord? Move up?

Rachel: I think that the majority of HCPs need to accept that they’re not going to be the one person that makes a breastfeeding relationship successful – they just don’t have the specialist training. But they need to make sure they’re not one of the ones that breaks it. There was a lot of personal opinion given (“my children were formula fed and they’re fine” was a common one). You wouldn’t get away with that in any other area of medicine.

And if you’re someone who regularly has contact with breastfeeding mothers, make sure you either know enough to help, or know where to send them to get help. Don’t just fluff your way through.

PSG D: Yes!

Rachel: Oh, and give mothers genuine support in whatever they want/need to do. While most of the stories that got to me involved hcps that were ineffective or unhelpful, the one that stayed with me the most was someone whose health visitor made her feel like she was abusing her child for giving formula top ups, and was told “anyone who truly loves their child can breastfeed them”. So she felt like she didn’t love her child enough and was afraid the health visitor was going to call social services and have her child taken from her.

PSG D: Can’t imagine how awful this must have been. All HCPs should be trained in having unconditional positive regard towards others, and in active listening!

PSG AR: I think it’s fair to say that a lot of people assume that they’ve made the “best” choice and therefore anyone who has made a different choice to them must be “wrong”.

PSG M: More funding. More training. Lobby government. Make it a priority. There are systematic issues. Some fabulous staff but they need more training and support.

PSG L: I need to say something I hope you won’t judge me about it. Being foreign born and learning the system like pay as you go, I observed some of the negative comments are just class issues. Middle-working class which I define myself, these groups of people are the ones generally with the harshest comments.

PSG D: Harshest comments about what? Can you please elaborate? Thanks.

PSG L: Because my baby was tiny I had a lot of visits from health visitor. She was asking the same questions again and again like cross examination. 2-3 later on I asked my husband to attend the visits because they were feeling like in an interrogation. My husband (British born) after attending the first one decided to join all visits because he felt the way the questions asked repeatedly was stressing and I shouldn’t go through alone. I am a foreign born and when something is repeated several times I start to think maybe I don’t understand it properly. I felt like the health visitor will call on the social services because I refuse to top up with formula. I sounds ridiculous now at the time with the pregnancy brain the stress was very real to me.

PSG D: Thanks for elaborating. Sorry you went through that.

Danielle:
When I was a new peer supporter, I was unable to help a Mum resolve her painful feeding. I was deeply frustrated because I had diligently explained to her what she needed to do (as I saw it back then) and it wasn’t working. I passed this Mum to a fellow peer supporter with many years experience. She invited me to observe. I was bewildered as the supporter asked open questions that were totally irrelevant to my mind. My bewilderment turned to discomfort as the Mum began to cry. Then, when the supporter made exactly the same suggestions as me, AND THEY WORKED I found myself defensive, with a dented ego.

Later, when we debriefed on the situation, I was able to express my feelings to the supporter. “You didn’t do anything different to me!” I said, throwing my hands up in exasperation.
“Nothing?” Was the reply.
“Well, she cried with you…”
“She released her fears and feelings through crying, so she could hear me clearly.”

That was 5 years ago now, and it was a lightbulb moment for me. We can throw around all the knitted breasts and flipples in the world, but if we don’t let Mum tell her story then we can’t possibly get the same results because stressed, frightened, tired people don’t hold information in their brains as well as relaxed, connected people.

PSG R: I think the judgements both ones that are being made or feel like they’re being made is really interesting to explore in correlation with breastfeeding ‘success’ – I suppose power dynamic that come into play with medical practitioners & the very real fear many must have about their child being taken away -needing to comply with medical guidance mixed with hormones/wanting to do the best for your child intersected with race/nationality (English not as first language)/ class could be layered onto people’s accounts. Sorry must go to sleep/not making much sense – but definitely something around the power dynamic…

Danielle: Trust a mother if she tells you there is a problem. Believe her if she says it hurts. Don’t be afraid to admit you’re not sure of the answer, but reassure that you will find out and get back to her. Then get back to her.

PSG D: Your words would make a brilliant meme!

PSG J: There’s a massive lack of research about Tongue Tie and the need to treat it. The research that does exist has huge methodological issues which undermines the findings. It leaves the decision whether to treat or not open to debate amongst professionals. There’s not even consensus or reliable way on how to assess for it. It’s a total lottery. If this study can raise the profile of these issues and improve detection and treatment then it would be a huge thing to have achieved!

Danielle: We found that there are even surgeons that ‘don’t believe in tongue-tie’!!

PSG J: Oh yes, I met an ENT who only believed in anterior ties, a paed who didn’t believe at all, a paed who believes in them but disagreed with treating them, even a lactation consultant who thought that all I had to do was improve position and attachment and all would be fine. My baby came within 24hrs of needing to be tube fed because of these people. I got an urgent private appointment and she started gaining weight as soon as the tie was cut.

PSG V: Another numbers question: how many mothers mentioned tongue tie as an issue? And how does that compare to expected rates of tongue tie? Of course our sample will be over-representative, but I’m still interested.

PSG J: I’m not sure there are any reliable data on rates of tongue tie. I smell another study coming…. 🤣🤣

Danielle: I get the feeling it’s under reported

PSG J: Massively! It’s a very low risk procedure, I’ve no idea why it’s such a taboo!

Kate: Tongue tie definitely wasn’t straightforward and it wasn’t the biggest issue that was latch. Generally it took ages to diagnose and sometimes the wait for treatment was weeks/months. Sometimes the tie was being cut two or three times and reattaching. I think the most surprising was in some cases cutting the tie was making very little difference to the issues, even when the tie was cut privately. It is definitely an area for more study.

PSG J: I think that’s one of the most complex parts of tongue tie – we don’t really know why some reattach and some don’t. Lots of factors in reality. Not fully cutting it the first time is a big issue and has a lot to do with practitioner training and confidence. There is no formal competency that a practitioner has to have to do the procedure. Only 2 formal training routes in the UK. Lots of surgeons just teach each other. Some GPs have been reported to do it. It’s very unregulated.

Kate: The trouble with the tongue tie is it was causing so many other issues – pain, nipple damage, ineffective transfer of milk. My own personal experience was an undiagnosed tongue tie and to be honest some good assistance with how to latch baby did help before it was cut. The tongue tie wouldn’t have been so much of an issue if I had had the latch help before the damage occurred.

PSG AF: I’m a student midwife and am trained in assessment of tongue tie. I can spot the signs relatively quickly but the amount of babies I’ve seen that I think have a tongue tie and the MW (with no training whatsoever in tongue tie) says “baby’s fine, no tongue tie seen”. It drives me mad!

PSG J: Have they trained you to lift the tongue and check for range of movements?

PSG AF: They haven’t trained me, I paid for the course myself when working in neonates – currently on the waiting list to be able to do tongue tie cuts but it’s a long list!

Danielle: I heard that midwives (many moons ago) would have a long little finger nail and “check” under the tongue at birth!!!

PSG J: Apparently had to stop because of infections.

PSG AG: All of this resonates so much with me 😢

PSG M: So many people popped their heads around the curtain on the maternity ward, said ‘your latch looks fine’ and didn’t spend enough time with me to work out I was struggling. Need more time with people – and midwives / nurses / care assistants need help and training to make this happen. They’re over worked and don’t have the time to spend with mothers in those crucial first few days.

PSG B: Yep, as long as they’ve ticked the boxes which seems to be the focus instead of actually providing support

Rachel: Yes. My own personal breastfeeding journey started with a baby who hadn’t fed for 24 hours but in my discharge notes they’d put “feeding established” and my only interaction with breastfeeding support added to the trauma of an awful birth. I trained as a peer supporter in the hope that I could improve things for other people…

Serena: I looked into the medication/prescribing results and the results were, as you may suspect, not supportive of breastfeeding.

PSG AF: I find many drs/pharmacists don’t trust the BfN/Wendy Jones reference and dismiss her work and consequently stop certain meds or tell mums they aren’t safe in breastfeeding altogether 🙈

Serena: The most common response to prescribing to mothers was to stop feeding to pretty much every medication going. The one that sticks in my mind is a story of a parent being assured the codine she’s taking is ok, that she is ok to breastfeed her child. Only to be told 24 hours later it’s the exact opposite and very dangerous at that. All after a traumatic labour/birth.

Danielle: She totally lost faith in all HCP’s because of constantly conflicting advice.

PSG S: That’s so frustrating. It’s not that hard to look up lactmed!

PSG D: The lack of humanity and dignity in it all. Awful.

PSG V: That’s amazing when there’s often alternative medications.

PSG Z: Oh this is a recurrent frustration for me at work, despite constant reminders that we have a section on our workspace about prescribing in lactation and a load of links 😠


Serena: The thing that surprised me the most was the lack of knowledge hcps had in relation to prescribing medication and whether safe to do so. The default setting was to always stop.

PSG J: The information sheets from the Breast Feeding Network are a god send for this. I direct doctors to them every time I need something. Unfortunately I didn’t know about these right at the start so suffered some amazing pain because a pharmacist told me I’d have to pump and dump if I took anything other than paracetamol.

PSG D: Serena no one says to stop walking if you have problems with your legs, or stop breathing if you have problems with your lungs. We must ask how breastfeeding got so disposable in a world where our ancestral survival pretty much depended on it.

PSG S: That’s as if they don’t value breastfeeding at all. Like stopping doesn’t have any real cost for mother or child. Like it’s along the lines of, “Don’t eat any pineapple while you’re on this medication.”

Serena: So true, what a fantastic comparison.

PSG D: Serena yeah, when I look at breastfeeding as a body function, I can’t get my head around how it is generally regarded in society today.


Question for everyone:

I’m not sure if it’s related, but there was a pain study that showed that women’s pain was ignored/underestimated.

Do you think the same issue occurs with breastfeeding? Do we have to prove to HCPs just how bad it is before they listen?

PSG T: This is true with girls and boys too – girls pain is ignored more than boys

PSG E: Danielle: quite possibly!

Bearing in mind most people don’t breastfeed, so there is a high likelihood HCPs have no direct experience to draw on, or have negative and unresolved issues/feelings from not being able to due to lack of support

PSG AM: I told a health visitor at the baby cafe that feeding was incredibly painful and she said “have you taken some paracetamol?” I had to explain to her that I was taking maximum dose paracetamol and ibuprofen and it was still unbearable. It was only when she saw me feeding and silently crying that she said in a surprised voice “oh, you are in pain aren’t you?!”

So yes, I think you might have hit the nail on the head.

PSG D: I’m certain it feeds into it. The hysterical mother’s syndrome, the exaggerating women’s nonsense etc…

These lack of regard for our pains at our most vulnerable moments doesn’t exist in a vacuum.

PSG E: It was heavily implied by a paed plastic surgeon that I was an anxious mother. And had I tried a bottle? His kids had a bottle and were fine. He meant formula

Kate: Yes. The damage I had was there to see but just stick a bit of cream on it!

PSG D: Our maxillofacial (I think that’s the word) doctor who cut our first tongue tie told us about how his wife gave up breastfeeding etc. I’m not sure why he thought that was helpful to tell us in the state we were in.

I hear you.

PSG Z: I think medicine is still paternalistic, women’s issues are ignored, I see it so frequently at work 😔

PSG AM: It’s interesting that when you’re pregnant you’re repeatedly told that if something doesn’t feel right, get it checked. Trust your intuition because often that’s a good indication. Better to be safe than sorry. But as soon as the baby is out of you safely you become a hysterical mother who is clearly over cautious and anxious/depressed rather than actually having an issue which needs support.

PSG D: Yeah; still trying to make sense of the gap in the treatment of mothers antenatally and postnatally.


PSG AA: Reading all of this, from a practitioner POV and also as someone who has worked on up-skilling staff in breastfeeding support, some of my experience points to the fact that decision makers (much higher up) don’t really have much of a handle on all of this, unless they’ve had kids and tried to breastfeed. And even then, that will only be a partial view of the global issues.
More money etc would be great, but my feeling is too that we need to educate decision makers 😀 so that any resources can be allocated in more effective ways. If people don’t use a skillset v often then they quickly lose those skills, for example. It would be useful to think about who should be providing support and in what set up.

PSG B: Human rights budgeting would help…

PSG M: Absolutely agree. Compiling responses in studies like this to highlight where and how funding is needed is critical.

There is a total lack of understanding. Until I tried it I had no idea how hard breastfeeding could be, or the myriad of complex problems or issues that could occur. I think lots of people give up because they don’t get the expert support they need, and we need to communicate this to policy makers.

PSG B: This is why this study will be so valuable – policy makers and ministers make decisions based on evidence and data

PSG AH: As a HCP with breastfeeding experience and noting down all of what is being said – I can’t agree more and I also think decision makers MUST make it a priority to make sure HCPs do not – categorically DO NOT put their own futile opinion towards any parent.

No where else in healthcare – midwifery to be precise can you give your personal opinion as this is seen as coercive. This is 100% true for breastfeeding support. You must as a HCP be able to give support that is tailored to that mother and baby/ies. Many HCPs do not know how to do this on an individual basis – and although Unicef Foundation training can help it is not a means of individual support when it comes to issues faced by women.

Knowing you can signpost is crucial and the red tape is awful! Not being able to signpost to a Private tongue tie practitioner when you work for an NHS trust/not allowed to give leaflets on services you know will be beneficial in that individual woman’s case… instead you are only allowed to give blanket advice?! This is what I was hated for by managers and colleagues – I went and did what I wasn’t allowed to do because I cared more for those mums and babies than I did my job! I still have my job by the way, because I do everything that’s evidence based and the law cannot contend that!!!!

PSG AA: Having had to advocate fairly heftily myself these past few years, to obtain better healthcare for myself, I can see too, how these skills would help families. It shouldn’t have to get critical for them to find their inner bear. They should feel confident in having open dialogues and not have to be fearful to express their needs. PALS etc is all very well, but it’s in the moment that we need to empower people, so they obtain the best clinical care at that moment, and not as part of some debrief 🙁 It’s hard to be too vocal as one worries about alienating people and also appearing ungrateful. I get that!

PSG AH: And I also find that when you are a HCP with training/knowledge and you give info to a woman, and she makes an informed decision… and then another HCP without as much knowledge if any comes along and disregards what’s you’ve said because “they have never heard that before” or “that is not what we do here” the mother is left confused and mistrustful of the HCP who originally gave her info, because that HCP wasn’t pushy but this one is she feels like she has to follow the pushy advice and then the colleagues back up the HCP with little or no knowledge because they also don’t have a clue what to do/say. This has happened countless times. It is heartbreaking and soul destroying knowing you are trying to do your best but the message just isn’t received by those that should know best too!


Question for the analysts:

Did you find anything that was interesting or surprising about the role of lactation consultants, breastfeeding counsellors and peer supporters etc?

PSG F: I’d be interested to know this answer, having qualified as a peer supporter just last week!

PSG AC: Congratulations!

PSG F: Thanks, I’m more proud & excited about passing my hand expression & positioning/attachment assessments than I was about graduating from university!! 😀

Danielle: I was surprised that people had to know about and self-refer to peer support/lactation consultants. Why are HCPs using them more

PSG F: So GPs etc wouldn’t signpost & refer mums on appropriately to someone better able to help if they couldn’t personally?

Danielle: Nope. Some HVs would signpost mothers to breastfeeding cafes, but going out to find help was too overwhelming for most struggling mothers (and I include myself in this)

PSG F: Any idea why they don’t?!

Danielle: I assume they feel their advice is adequate. Problems were more often ignored.

PSG F: Where I grew up I have a lot of GP friends but all gave up during the first week & so I imagine their advice to patients is very much ‘formula is fine, that’s what mine had’ (I saw one of them for a different issue & when I needed to breastfeed while there she mentioned that none of hers got any of that!)

PSG X: I have a friend that is a GP who breastfed both her children but feels it’s her job to give permission to mothers to stop breastfeeding. Not direct them to services and support, no to give them permission to stop 🙁 She also thinks long term feeding is odd 🙁

Kate: I think they were coming in too late to the stories after damage had been done. It seemed to be mainly midwives in hospital and midwives and HV on discharge. Then if problems persist they were signposted to further support but for many it was then a case of unravelling everything that had gone wrong. I think if lactation consultants, breastfeeding counsellors and peer supporters were available at the very beginning a lot of these stories may not have happened.

PSG F: I just qualified as a peer supporter last week, & the 12 of us will start on the local hospital wards in April, each volunteering once a week for minimum 1 year each. I’ll share some of these findings with the group to encourage them of the difference hopefully we can make by seeing the mums in those first few vital days…

Kate: That would be great. Sometimes it was those days that were pivotal.

PSG X: We are still waiting for the Health Visitors to actually train peer supporters. They were given the funding 2 years ago now but still nothing. Our hospital and the mothers are in desperate need.

PSG F: Any chance their funding can be given to someone more proactive?! The hospital I’ll be volunteering at got funding for the Breastfeeding Network to train 12 of us.

PSG O: I trained with the BfN over a year ago to support at a local hospital. They are still waiting to get the volunteers into the hospital due to their politics and policies preventing the volunteers starting. Thankfully there are lots of community opportunities for the volunteers and they have just been awarded another 12 months funding so hope we can get in there soon

PSG F That’s awful! Which policies/politics?

Serena: There were examples of counsellors that informed and at times fought for mum with prescribers for the right treatment


Question for the group members:

One theme that came out of the study is that antenatal classes don’t give mothers any idea of the realities of breastfeeding, by sticking only to the positives.

Did people here find that? Or did your ante-natal classes (if you went to them!) talk about potential issues and what to do about them??

PSG D: I wonder if there’s also a gap between what is taught and what is heard, and also what is remembered when things go well vs didn’t go well.

I can’t remember much of my antenatal class, i’ll have to check my notes. 😀

PSG L: The antenatal class I attend mainly focused with the labour nothing about feeding. They were expecting us to join the follow up after birth course, but with a tiny baby I didn’t want to go out.

PSG J: apparently they do this because they feel it would put mothers off even trying breastfeed in the first place. Particularly in those who are ambivalent in the first place

PSG T: This is something that is also in the academic literature – a lot of mothers/parents feel like they haven’t been prepared at all by antenatal classes etc.

PSG AB: I wonder what the difference would be between what is actually said / discussed and what is remembered subsequently?

PSG AI: nooo, mine went through so many difficulties we went out & got formula the next weekend..ridiculous I was so overwhelmed after it when I was so sure breastfeeding is what I would do 🤦‍♀️

PSG AI: I think arming mothers with where to go for support, meet with other mothers for a support network & reassurance that the majority of women can breastfeed & with the right support they can too, should they wish.

PSG D: It’s a bit catch 22, isn’t it. Imagine if they spoke about things like prolapse, pre-eclampsia, 4th degree tears etc?

How much is enough vs too much?

PSG AB: I guess that’s the fine line!

PSG AJ: The advice I received at mine left me completely unprepared. It was all very much “the baby will know what to do!”, “If you put them on the breast they’ll magically wiggle on”. You can imagine my surprise when I then had two babies that had absolutely no latch. If someone had actually told me how prematurity & c-sections might affect feeding (both very likely given I was having twins) I would have gone out and armed myself with information rather than presuming everything would be fine.

PSG R: Breastfeeding was definitely covered in our NCT class but I think it came early in the course when maybe it would have been better later. I went to a NHS breastfeeding preparation class but the focus was all on why you should bf, in my mind I didn’t need convincing of that as I was already at the class so some more practical advice could have been good plus how to access non NHS support. The NHS class was woeful attended especially in comparison to the NHS birth prep class – though I think both might have been cut by now.

PSG AD: In my antenatal class the midwife told an anecdote about having to take a baby out of a mother’s arms because she was suffocating it with her big boobs while trying to breastfeed. I was absolutely terrified after that.

PSG R: again it’s these little throw away comments that are so impactful. I was told I needed to be careful when cup feeding (on a feeding plan in hospital and getting the prescribed quantity in was tough) and warned that I needed to be really careful as it’s easy to asphyxiate them – as if cup feeding when you’ve never done it before is so tricky!

PSG O: I remember finally getting through the first week with my baby, and thinking now what? All that was covered was the labour and very first days, nothing on how to look after baby going forward and what to expect at different stages.
The breastfeeding course spoke about positioning and attachment but not about cluster feeding, how to prepare yourself mentally etc.

PSG AN: Antenatal classes for me (standard nhs) was factual, no mechanics involved just the usual strap line ‘most natural/breast is best’. What stuck in my head was the advice around bottles, ‘don’t waste your money on fancy bottles, we’ve found that the cheap ones tend to be the ones babies prefer’

PSG AO: I want to know why colostrum harvesting isn’t standard advice for mothers that say they plan to breastfeed? It gives you belief in your body and teaches you to hand express before all the issues arise

PSG AM: I personally wanted to know why they gave me 5x1ml syringes (which I filled in one sitting) for harvesting colostrum, but when my baby needed a “top up” for low blood sugars they insisted she have 40ml every 3 hours. I could absolutely have collected that in advance, but they refused to give me more than 5 syringes…

PSG AO: I had to buy syringes because midwives wouldn’t provide them.

PSG P: I had gestational diabetes, and only found out about colostrum harvesting on a Facebook support group for GD when I asked my midwife she said there was no need to it and didn’t really speak any further with me about it. It wasn’t until a few days before being Induced i mentioned it in passing to another midwife who immediately gave me a demo on hand expressing and leaflets and gave me syringes to go away with. Unfortunately by then I was pretty confused and overwhelmed by all the info and didnt manage to harvest anything. I do wish it had been mentioned much much sooner.

PSG E: I was shown how by a midwifery assistant, but she only took 2 syringes. I thought it was great (and had never heard of it). Glad we didn’t need it.

 

I didn’t come across one example where a prescriber was known to check with BFN for back up before prescribing

PSG Q: I’d say my GPs have been brilliant for checking to make sure a prescription is breastfeeding friendly. I have to ask these days (my little girl is 5) but they have never made a comment or grumbled, and always double check for me.

(to add, they usually check in their reference books in their office, only once or twice have they checked online if the books weren’t clear. So i guess they weren’t using the BFN [breastfeeding network])

PSG AO: The BNF has shite breastfeeding advice and basically says don’t take anything, which is where most of the poor medication advice originates!

I wrote to the BNF and asked why they couldn’t include actual breastfeeding advice. I got a shite reply.

PSG F: What is the BNF?

Serena: They are prescribing books. Like a drug dictionary

Danielle: British National Formulary. On every doctor’s/ward’s book shelf and online too. I’m yet to find a doctor that has heard of Lactmed

Rachel: I was preparing a presentation on a specific medication today and noticed that in the BNF it says do not feed and on the NHS website (the one for the public, not for HCPs) it says that there is plenty of data that says if the baby is healthy it’s fine to take while breastfeeding and then gives some very sensible advice about what to look out for if you have concerns about the baby.

Danielle: Just out of interest which drug?

Rachel: Venlafaxine

PSG F: So is Lactmed online? (I’d not heard of it until now) Are doctors likely to respect it’s authority more than BfN info?

PSG AK: Lactmed is run by the US library of medicine, so it should be fairly respected, but very few doctors would think to look at it – we use the BNF multiple times a day and trust it utterly. Unless specifically warned, you would not think it was lying to you! However there is also an NHS service – UKDILAS but it’s not as comprehensive.

PSG F: Thanks, that’s helpful! So what would be the best way to approach my many GP friends (who all formula fed their babies…) to inform them of the extra more accurate info out there, without putting them on the defensive that I’m insinuating that their trusted BNF may not be fully accurate…?!

PSG AK: Direct them to the GP Infant Feeding Network – www.gpifn.org.uk – saying that it’s a respected and helpful website designed by GPs for GPs 🙂

PSG A:** Trigger warning*
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Apparently the doctors in our borough now “all use Lactmed”, well the staff on the mental health pathway anyway, according to the CCG mental health lead — this was only put in place after a mother killed her two babies, having stopped taking her meds because she was breastfeeding and none of her HCPs spotted it or supported her (or referred her to specialist breastfeeding support to help with her breastfeeding issues – but of course referring to specialist skilled breastfeeding support hasn’t been added to the pathway)

PSG AC: That’s absolutely heartbreaking. I don’t have the words.

Why does it have to take something so tragic to make people listen?

Do you think other boroughs will follow their lead or is this solely a local initiative (/reaction to a tragedy).

Is there a mechanism by which different trusts can share this kind of information so we don’t have to wait for more tragedies to happen?

PSG A: I hope that some of the learning is shared. Lactmed is mentioned in the Pan-London perinatal mental health guidance for newborn assessment, as is breastfeeding.

Referral to specialist skilled support for breastfeeding is not however mentioned.
However I’m not sure that breastfeeding is valued or prioritised in mental health pathways or by HPs though, as so few mental health specialists are aware of the role that breastfeeding can play to mitigate stress, trauma, low mood, poor sleep etc.
I wish everyone could hear Kathy Kendall Tackett speak!!!
If you haven’t, then do look out for her talks.

PSG Z: That was a similar story with Charlotte Bevan in Bristol 😔
She had stopped taking her mental health meds to breastfeed and due to that and other issues left the local post natal ward with her baby and they were both found a few days later 😭😭😭😭 sorry that story always makes me cry 😔


Danielle: I hope we managed to answer your questions?

Sophia: It’s been really fab. Can I say again how impressed I am by what you’ve all achieved here?

PSG R: Thanks for everyone’s work on this particularly when it’s bought up difficult emotions xx

PSG AL: A few things strike me:

1) This is SO BLOODY COMPELLING. It couldn’t fail to stop in their tracks any HCP with an ounce of compassion or professionalism.

2) LOOK at the need people have to tell their stories. I wonder what other research is out there about this. PSG has left me pretty much obsessed with the need to examine and harness storytelling for its power to illuminate useful directions in research and its value as a data source.

PSG AL: Also remembering a conversation with Big Birthas, Amber Marshall about how no medic has “upset and disempower my patient” as an aim, yet listening to people shows that it happens a lot. And how presenting evidence of that phenomenon may be the human nudge that makes practitioners reconsider key bits of medical evidence and their interactions.

PSG AH: One theme that runs through the research findings is midwives need to be knowledgable and if they don’t know how to help – to signpost.

Breastfeeding and Healthcare Experiences: Results

At the time of publishing this blog post, preliminary results are available as the study is still underway.

The latest news on this research will be available at: Breastfeeding and Healthcare Experiences: Results

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