Reflections on Primary Care and Public Health Conference 2019

Well, that sure was an exhausting but very worthwhile couple of days!

NEC Loading Bay – Hi-vis really sets off my outfit beautifully!

As my first experience as a conference exhibitor it was possibly a bit of a baptism of fire doing two days @PrimaryCareShow, plus set-up and take down. Definitely a steep learning curve, but really excellent to have the opportunity to put our Parenting Science Gang Research findings before a wider (and very receptive) audience!

Met many, many lovely healthcare professionals across the two days, the vast majority of whom are totally sympathetic to the rough deal bigger mums often experience, and are all too aware of some of the hurtful and unnecessary things that can be said and done while navigating maternity services; some of whom knew from personal experience!

Some interesting discussions too with healthcare professionals who clearly thought their practice was empathetic, encouraging, and open, but whose use of language belied a weight bias, or a propensity to be dictatorial in their provision of care…

What Women Wanted
Postcard – Words used by women in our research to describe the birth experiences they hoped for

Did they notice my (hopefully subtle) efforts at positively reframing their words? Who knows, but I didn’t get into any heated debates, so my challenging of attitudes was at least successful in that I seemingly didn’t make any enemies or get anyone’s backs up, I just hope my words didn’t fly completely undetected under the radar!

We did raise some eyebrows with some of the quotes from the research, even from very experienced midwives, and hopefully prompted some thoughts and reflective practice. Also gained a few new followers on Twitter and some new sign-ups to the Facebook chat group, hi if you’re reading!

Although most of the time was spent in the exhibition hall speaking to delegates, I did manage to get along to 4 conference presentations across the two days – two in the Mother & Baby programme and two of the Obesity & Weight Management sessions, with mixed reaction!

What Women Got
Words used by women in our research to describe their actual birth experiences

I was shocked and frustrated to listen to Judith Stephenson, a Professor of Sexual and Reproductive Health, waxing lyrical about a 2018 study which promoted a ‘drink only semi-skimmed milk for 8 weeks’ diet in order to facilitate rapid weight loss and thus be in a better position to enter into pregnancy – when all studies I have ever encountered suggest that restrictive diets and rapid weight loss do more harm than good, and while seemingly effective in the short term, are rarely successful in the medium to long term.

I was also frustrated that she feels that obese women planning pregnancy need to be told that they would decrease risks by losing weight. “This isn’t about blaming women” (except it sounds a lot like it!!). In my experience women are VERY aware that we should lose weight, and it’s not that bloody simple; repeatedly telling us this fact does nothing to help us, and just increases blame, guilt, and disengagement. If you actually want to help us, just ask if we’d like to do something about weight management/fitness or like to hear about local options available to help, and if we say no, move on!

I was at least able to put these points in questions after the session, and several attendees came and sought me out afterwards to thank me/agree/discuss further, so definitely glad I attended that one!

On the plus side, I do agree with her that healthcare services are missing a trick when women attending a family planning clinic for removal of a long-term contraceptive device are not given basic information about preconception health, e.g. to take folic acid, and offering signposting to services available to help with weight loss, smoking cessation etc. given that pregnancy is a very pivotal moment in a woman’s life and the likelihood is that we are at our most receptive and motivated to change any perceived negative behaviours, for the benefit of the planned-for baby.

I later attended an excellent talk by Debra Bick of the University of Warwick on the Care of Women with Obesity in Pregnancy which was far more supportive in the use of language, remembered that there’s often a husband or partner in this equation, and a really useful review of recent studies and their results – which I now need to seek out and read!

The following day was more of the same – firstly a really aggravating talk on
Weight Management During Pregnancy and the Post-Natal Period by
Dr Amanda Avery… who was billed as the chair of the BDA Obesity Specialist Group and an Associate Professor in Nutrition and Dietetics, but just so happens to be on the payroll of Slimming World and who uses a LOT of ‘they’/’other’ and presumptive-generalisation-speak when talking about women with obesity. Very judgemental/dictatorial/patronising – pregnancy is a “teaching opportunity”. All right, we get it: you’re not and never have been a fatty, and those of us who are overweight just need you to swoop in and educate us! Grrrrrr. Haven’t we moved on AT ALL?!?

She then went on to minimise the risks to the unborn of weight loss while pregnant, recommend Slimming World (of course!), push for encouraging obese women to lose weight while pregnant, and advocate for a return to weighing women at every antenatal appointment to encourage this – “it’s a low-cost intervention – you only need a set of scales!” – yes, that was dropped because it was stigmatising, anxiety inducing, disengaging, and showed no benefit to fetal and neonatal health!?! Then she suggested that the reason that childhood obesity has increased since the 1990s is because that’s when we stopped doing regular antenatal weighing! For goodness’ sakes – oversimplification maybe!?! I think quite a few other things may have changed in those two decades!?!

So. Many. Issues… I was really struggling to work out which points I was going to challenge about her talk when it came to question time – would it one of the above concerns, the persistent conflation of pregnancy weight gain with obesity, or for failing to adjust macrosomia figures to account for gestational diabetes… but no need – there was no opportunity for questions unless you stayed to listen to the following talk too! Arrrgh!

Fortunately my confidence was later restored by a lovely talk by Karen Gaynor, a senior dietitian from Dublin, talking about The Impact of Stigma and Bias in Obesity Treatment, who totally gets it: You want to build an inclusive empowering dietician service? Then ask your patients what they want and involve them in designing it!

Don’t push for dramatic and unachievable weight loss goals – 10% is about the realistic limit! Remember that around 85% of obesity is due to genetic factors – only 15% down to environmental factors, with only a proportion of that down to personal willpower. Never forget we’re in an obesogenic environment and change is a massive uphill struggle and life-long commitment! Don’t use shaming imagery – there are plenty of online free-to-use gallery images featuring empowering pictures of overweight and obese people (try https://easo.org/media-portal/obesity-image-bank/ ) – and if you see stigmatising imagery or language used in practice or the media, call it out!! Honestly, the talk, and the questions/comments from delegates which followed were so uplifting! What a great session to end on!

I totally need to namecheck our lovely neighbours at https://littlepeopleuk.org/ and https://www.burningnightscrps.org/ with whom we shared laughs (and confectionery when energy was flagging)!

Most special thanks go to (in order of appearance) the wonderful El, Serena, Mawgen, and Dani; who worked charmingly and tirelessly along with me (with the aid of sugar and caffeine) in talking to dozens? hundreds? (wish I’d had the foresight to bring a tally counter – lesson learnt) of healthcare professionals across the two days.

Lastly (this is starting to feel like an Oscar acceptance speech, I’m sure someone somewhere is frantically gesturing me to get a move on as the orchestra pipes up!) huge thanks have to go to The Parenting Science Gang for making this happen, and Wellcome for funding it!

Lots of contacts made, lots of thoughts provoked, lots of ideas forged, lots of avenues opened.

Big Birtha x

Post-show carnage
Post-show carnage

BigBirthas PSG Research Results!

So, you’ll have been wondering what happened to the research BigBirthas was doing in collaboration with the Parenting Science Gang?

Well, we’re all done. Thank you to everyone who joined in and got involved. 161 people joined the Facebook Group in the end, we took part in dozens of Q&A sessions with experts, some of whom sounded like they enjoyed it as much as we did!

Conversations within the group revealed that many of us felt that we were given no choices during pregnancy and labour; that our high BMI led to health care professionals failing to offer choices normally available to pregnant mothers, and that often, there was no medical evidence to suggest that these choices weren’t perfectly reasonable. Many of us had had very negative experiences, even when our pregnancies themselves were uncomplicated.

This led us to decide to research the way that choice was presented to expectant mothers with a high BMI and how that affected their experiences. Were our experiences typical? Or had our negative experiences drawn us together in a way that precluded us from being aware of high-BMI women who’d had less traumatic pregnancies and births, and made us wrongly assume negative experiences were universal?

We invited volunteers to be interviewed by email, recruited from anywhere and everywhere in the UK we could think to ask, and were then overwhelmed at what an enthusiastic response we received! Almost immediately, we got 60+ responses to our request for research interviewees, and 20 filled in the full-length responses we needed to do our qualitative analysis using thematic analysis methods. Then we stopped asking for more respondents, because 20 was about the limit we could manage with a small group of first-time thematic analysts running the show!

But that is the whole point of Parenting Science Gang; letting the parents be in charge of asking the questions they want answers to, and then working out how to do it!

What did we find out?

None of our findings were a great surprise to us; they confirmed that the conversations our group had had were pretty typical. Although there were some great stories about knowledgeable health care professionals who treated mothers with dignity, we also found clear themes of unsatisfactory treatment. Several reported that they saw an immediate change of tone as soon as they were weighed:

“When I’d been weighed and measured she immediately started saying things like “Oh, there will be a problem because of your weight” but wouldn’t explain what the problem was. She wasn’t as friendly then and wouldn’t explain things to me”

Language changed, and some mothers felt lectured and patronised. There were almost constant warnings about potential problems (most of which never transpired), repeated tests for conditions (many of which never developed), with some health care professionals resorting to “persuading” mothers using guilt tactics.

“I felt that I was coerced and guilted into an additional scan by one particular midwife.”

“I felt that I didn’t have a choice, I was scared into decisions.”

“I was told ‘Well you must have known the risks when you decided to get pregnant, being the weight you are.’”

In most cases, where mothers were pregnant for the first time, they went along with the recommendations of health care professionals without question. This too echoed our experiences in the group. It was only after the birth that many of our respondents realised that they should have had a choice about the decisions made, and these decisions may have made due to an assumption of problems emerging, rather than a careful consideration of the individual mother’s situation.

“I didn’t realise you could refuse induction”

“In both labours vaginal examination was presented as a non-option.”

Some mothers felt that they had been actively ignored if they challenged recommendations. Many of our group found reading these testimonials too difficult to manage. They triggered memories of our own experiences of being ignored and in some cases basically assaulted, for want of a better word, at a time of our most intense vulnerability, so if you do read the full findings, please be aware of this.

“I was given all the interventions including an epidural that I had refused”

“First time round I agreed to one [vaginal examination] and the midwife swept me without my consent.”

Worryingly, many mothers reported finding a great discrepancy between health care professionals, in terms of knowledge and subsequent behaviour. Sometimes mothers found that their weight was blamed for everything by a few professionals, but that other heath care professionals didn’t agree.

“The first sonographer very harshly said that the reason she had trouble was because I was quite fat so it was harder to get a good picture. During other scans I was told that weight doesn’t necessarily come into it and it really does depend on the competency of the sonographer and the position of the baby/womb/placenta”

Many mothers received conflicting messages about risk and options from different health care professionals, which was both confusing and upsetting, and didn’t inspire confidence in the system to provide personalised care for their own situation and needs.

“I felt that people knew best, but when professionals are literally disagreeing about the well-being of your unborn baby, it’s a bit disheartening.”

This lack of consistency, coupled with feeling judged and unsupported by health care professionals had a great effect on mothers, many of whom reported that pregnancy had been an extremely stressful time for them.

“I found it scary and confusing during my first pregnancy.”

“I left some midwife appointments afraid that I might die in labour!”

Second Pregnancy

Not unexpectedly, mothers prepared for subsequent pregnancies with care. No one mentioned losing weight, but many mothers talked about being much better informed; reading up on guidelines and risks, and being much more confident in asserting their views and wishes, and in challenging health care professionals to explain themselves, their actions and their recommendations.

“I had the confidence (or some might say bad attitude) to say, I’m not having all of those scans – they aren’t necessary and are a waste of my time.”

Many approached their relationships with health care professionals differently second time around, either making a concerted effort to form respectful and supportive relationships from the start, seeking out professionals they had found supportive in their first pregnancies, or by actively avoiding certain individuals, and in several cases paying for independent midwives or doulas to support and advocate for them.

Sadly, in several second pregnancies, mothers also reported avoiding health care professionals wherever possible; engaging as little as possible and refusing appointments where necessary. More than once, mothers reported needing to do this for the sake of their own mental health. This is clearly a very worrying result; it cannot be positive for any mother, irrespective of their medical needs, to be making an effort to avoid the health service provided to support them, but did seem to be a common response to prior bad experiences at the hands of the health care professionals.

We know (and I have complained many times!) that many of the risks that arise from having a high-BMI in pregnancy are delivered in terms which make them sound excessively alarming. For example, where a risk changes in likelihood from 0.1% to 0.3%, it is often represented as “THREE TIMES THE RISK” in big, bold letters, which makes the difference seem very alarming, when it is actually still very low risk. These alarm bells are also usually rung when the mum is already pregnant, so NOT a safe time to diet or do anything about it, and just increases the stress and feelings of guilt. This is not helpful, and given that no respondents mentioned consciously trying to lose weight between pregnancies, clearly not serving any weight-loss motivational purpose either.

There are examples of great care out there, but until the NHS is able to universally provide larger mums with a respectful and compassionate experience of pregnancy and labour, and ensure that mothers feel in control of what happens to them at this fundamental time, then we feel that many more mothers will suffer from unnecessary and unhelpful levels of stress during pregnancy, and some will avoid health care professionals altogether, potentially putting themselves at even greater risk.

You can read our full findings here: Big Birthas’ Findings

Huge thanks to the Parenting Science Gang Team for bringing this project to fruition, for being such lovely, patient, intelligent, enthusiastic ladies, and particularly to Sophia for birthing PSG in the first place. Long may PSG continue gaining funding and doing Citizen Science into all sorts of topics, because it’s bloody ace.

Go and have a look at the Parenting Science Gang page! This link says pretty much everything I’ve said above, worded pretty similarly, but if you have a mooch around, there’s all sorts of fascinating information about the other groups and their experiments on breastmilk, baby wearing, picky eating, homeschooling and more: http://parentingsciencegang.org.uk/experiments/big-birthas-findings/

If you’re interested in joining a groups of likeminded people, the BigBirthas Facebook group is still going, https://www.facebook.com/groups/bigbirthaspsg/, feel free to come and pick our collective brains, have a chat, discuss unicorns, it’s all good. We’re just now talking about how we might want to distribute our research findings, but we also chat about all topics BigBirthas related, and anyone can post a question for the wisdom of the hivemind to respond. You’d be very welcome.

xx

Big Birtha

Help us with our research!!

Exciting news! For a few months now, I’ve been working with an organisation called Parenting Science Gang – we are a group of mums (there may be a few dads, but it’s mostly mums) doing research into what interests us – and we’ve got a special Big Birthas Parenting Science Gang Group.

We’ve discussed what research we’d like to see, researched what science and data is already out there, and we’ve interviewed other scientists to get their views on what we should research and how to go about it, and now we’re finally ready, have received ethics approval, have volunteers ready to send out, receive, and analyse questionnaires – all we need are a few individuals who fit the criteria we’ve set to answer our email questions!

Could you help us?

We need people who:

  • are over 18
  • have had 2 or more pregnancies where their BMI was over 29
  • whose youngest child is under 3
  • whose births took place in the UK
  • are happy to be interviewed by email about their experiences

If you can say yes to all three, please follow this link for more information and sign up here to be interviewed –

http://parentingsciencegang.org.uk/experiments/big-birthas-research/

your thoughts could really make a difference!

Now For The Science Bit…

There’s a real lack of good quality research into high BMI pregnancies. There are few studies done specifically on the topic. Those that do exist are often with very small sample sizes, conflate being overweight with medical conditions, or have flawed methodology.

Yet we’re supposed to accept recommendations based on their results?

Pregnant Woman in front of windowEven given the state of some of it, I definitely prefer recommendations based on evidence! All too often we’re told we should do something while pregnant because it’s ‘policy’, yet when you start unpicking the advice, it turns out to be based on nothing more than a hunch – e.g.taking an an increased dose of Folic Acid.

And then there’s the problem with finding the evidence that applies to our circumstances when it does exist. Many Big Birthas out there, myself included, have found that it’s best not to assume that your healthcare professionals are experts in whatever course of action they’re proposing, and often have no idea of the evidence base (or lack of it) to support their advice, and so we have to do the research ourselves to ensure we’re making fully informed decisions!

Well, I can announce some exciting news.

Parenting Science Gang is a user-led citizen science project funded by Wellcome, and one of the new groups for 2018 is a Big Birthas Parenting Science Gang! This is an amazing opportunity to get involved in looking at issues faced by mothers and mothers-to-be with a high BMI.

You don’t need to be a scientist – I’m not! You just need to want more information and help us find it! We will look for evidence-based answers to the questions that us bigger mums want to know, and where we find gaps, we’ll design and run our own research studies to discover and publish our own scientific results and add to the body of knowledge available.

We’ll get advice from professional scientists along the way – but the group will be in charge of the experiments.

We’ll also have regular online Q&A sessions with experts. They will help us in designing our experiments, and maybe even point us in the direction of equipment and resources.

So far we’ve already talked about weight management in pregnancy, gestational diabetes, use of blood thinners in pregnancy, fat vaginas and more! And we’ve had Q&A sessions with yours truly and Clare Murphy of the British Pregnancy Advisory Service (BPAS).

Come along and find out more, ask your questions, and maybe even help us to find the answers! You can give as little or as much time as you choose. It’s a closed Facebook group (https://www.facebook.com/groups/1955647771354577/)  and there are also some meet-ups being organised across the country for people in the different Parenting Science Gangs to get together and discuss the issues in March and April.

We’d love to have you on board!