All in Research Projects
I received an email last week from a GP who was concerned about prescribing ondansetron off license during pregnancy. They through it was contraindicated in the BNF for use in pregnancy and while the local hospital said it was fine to use they still felt nervous about it. I thought I would publish my reply for other GP’s who might have the same question and also for women who want to discuss the evidence base behind this drug with their own doctor.
Sometimes in science, two separate discoveries happen at the same time and combine to make more than the sum of their parts. This is the case with a discovery published in late 2017, and another in March 2018, both of them in the Nature group of journals.
For those of us working entirely immersed in the hyperemesis gravidarum world, (namely myself and Karen Lodge in the Pregnancy Sickness Support office working alongside each other, her answering the helpline and my engaging in research activity and education for healthcare professions) there can be periods of time where we really feel the impact of the work we are doing and we go home at the end of the day knowing that so many women in the UK are getting really great care and support for their HG, in part thanks to the work that we’re doing from our little office in Cornwall.
For those of you new to my blog I'm currently undertaking a PhD in Health Studies focusing on hyperemesis gravidarum to help further the international research efforts. PhD's are fairly long and arduous processes and a hell of a lot slower than my usual pace of churning out surveys of women's experiences and so on. But, the research produced is of a far higher quality and therefore has a much greater impact on the world of evidence based medicine.
I handed the blog over to Dr Margaret O’Hara - HG survivor, medical physicist and Trustee of Pregnancy Sickness Support to talk about our current research and the importance of NVP and HG sufferers and survivors being involved.
As you know I’m the Chairperson for the National Hyperemesis Gravidarum charity Pregnancy Sickness Support which runs a helpline and a national support network of volunteers which I set up nearly 5 years ago. The network started as a small group of trustees each with a spreadsheet of three or four volunteers in their geographical region who they’ll have spoken on the phone to at some point.
Surviving NVP and HG is traumatic and debilitating, when you add in high summer temperatures (25 degrees + during the heat wave) it can make it that much more difficult to manage.
The amazing and wonderful Hyperemesis Education and Research (HER) Foundation in the USA are developing a tool which can be used to assess the severity of a woman’s HG symptoms and their impact on her life.
I wrote a few weeks ago regarding the exciting new research happening in The Netherlands to develop an internationally recognised definition and core outcome set for hyperemesis gravidarum. This research will have wide reaching implications for all future HG research and, if done well, will have an incredibly positive impact for HG sufferers for generations to come.
This blog post is going to sound rather formal compared to my normal tone but that’s because it’s had to pass through the Plymouth University Ethics proccess and my research supervisor (yes, even this sentence!)… but the good news is my research survey is now ready for women to take part in if they want to!
During the summer holidays I found out that I’d been accepted into Plymouth University to do a full time Masters in Clinical Research (MClinRes). So last week I went back to school!
For the last two years my colleagues at Pregnancy Sickness Support (PSS) have been working with the Royal College of Obstetricians & Gynaecologists (RCOG) on Green Top Guidelines for the treatment of Nausea and Vomiting in Pregnancy (NVP) and Hyperemesis Gravidarum (HG). A vast amount of work has gone into these guidelines and once out they will be widely considered the gold standard of HG treatment in the UK and doctors will have to have a good reason to not follow them. So they’re really very important!
Pregnancy is a strange phase of life… it seems that as soon as you get that little blue line everyone and his dog has nonsense advice and ludicrous old wives tales about the condition you’re in… from whether your bump “looks like” a boy or a girl to advice about not raising your arms above your head or the cord will wrap around the babies neck…
Following the launch of Hyperemesis Gravidarum - The Definitive Guide (HGDG) and it's amazing reception in the HG Community I've now got time to focus on a couple of other projects I've had up my sleeve for a few years.
As some of you know I've been working hard to develop collaborative relationships between organisations such as PSS and the Pregnancy & Medicine Initiative. There is only so much individuals and small organisations can do on their own and by pooling our resources and working together we can reach larger audiences and have a greater impact nationally and internationally. I've featured a post by Caroline before and since then our working relationship has strengthened further and last week saw the launch of a joint fundraising and leaflet distributing project to get information about medication in pregnancy to the women who need it. Over to Caroline to tell you more about this important and exciting project:
When the toothpaste foams just a little too much, or I swill my mouth and spit in the sink... sometimes it still makes me retch.
“Have you tried ginger” is a common suggestion received by sufferers of hyperemesis gravidarum from friends, colleagues, relatives and healthcare professionals, fact!
Veteran hyperemesis women know only too well what a nightmare trying to brush your teeth while trying not to spew up is! The brushing action, the foam, the whole process is utterly vomiting inducing and is not only a dreaded event but avoiding it is a source of massive guilt! There can be no denying that hyperemesis gravidarum can take a massive toll on your oral health... from the acid vomit damaging the enamel multiple times a day, to the poor diet and the days, weeks or months of avoiding brushing. It's an issue I get asked all the time about and we cover it in the book Hyperemesis Gravidarum - The Definitive Guide also.
It's Dyslexia Awareness Week this week and it got me thinking about my own journey with the condition, particularly in the wake of our incredibly successful book launch last month. I found some unlikely parallels with hyperemesis! What do dyslexia and hyperemesis have in common? Not a lot it may seem at first glance... one is a learning disability and the other is a pregnancy complication that causes severe and prolonged nausea and vomiting.
I've recently had the pleasure of speaking with Caroline De Bie from the Pregnancy & Medicine Initiative based in Brussels about developing a collaborative relationship between our organisations and cooperating together on projects to further education and research. It's an exciting time for developments in the world of Hyperemesis Gravidarum as we pick up the pace of improving services and awareness. Having featured as a guest blogger on their site I asked Caroline to feature on mine in order to raise awareness about their campaign.
