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Journey into the world of hyperemesis gravidarum...
02Sep 16

A week on the ground

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. When a women suffering hyperemesis would find our website she would fill in an online form and it would go to the trustee running her area and at some point, hopefully within a week they would get in touch with her and match her with a volunteer. And when I say their geographical area I’m talking the whole of Scotland, the whole of the South West and so on. A woman in Penzance might be supported by someone in Gloucester!

As the website was found more easily the contacts from sufferers increased month on month and as the wonders of Social Media platforms grew such as Facebook, with all it’s brilliance and nightmarishness combined, so did the pool of volunteers. Within a year we were putting in place formal application forms and interviews for volunteers and taking registration details for sufferers. Particularly as we learned from challenges such as Munchausen By Internet, a mental health condition in which physically well people seek intense online support for conditions they don’t have, such as hyperemesis gravidarum.

By the following summer we had grown to the point of requiring our first paid employee, for 10 hours per week, who put in place structures such as policies and guidelines for volunteering, guidance for professional support and a thorough online training package. We also computerised our feedback systems and invested in a mobile phone for the Charity. At this point the helpline was still an answerphone system where a message would be left and we would aim to get back to them within 48 hours.

Hyperemesis Graviadrum Helpline

Fast forward another three years through various ups and downs, challenges and successes and what we have today is simply incredible… we have an office with an actual phone line which rings and can be answered when a sufferer calls the helpline. It’s open Monday to Friday 9am – 4.30 and messages left outside this time are responded to the next working morning. We have a network of over 235 volunteers the length and breadth of the UK. From the Ilse of Harris to Penzance, in every major town across the country and many rural areas too. We have a forum with members numbering 2,500 and when hyperemesis gravidarum is in the news it’s us the press call for comment. Our leaflets can be found in numerous early pregnancy units these days and we’ve had GPs and midwives call our helpline for support in treating their patients.

And yet we have no formal funding! We’ve been rejected from the Lottery, the Tampon Tax Fund and so far every trust and grant giving organisation we’ve applied to.

This week I’ve been covering the Helpline for our, now FULL TIME employee which she was on annual leave. It’s been a while since I’ve answered the helpline for a full week and I truly enjoyed it. It’s humbling to speak to women who are going through HG now as my own memory fades with the passage of time (My daughter starts school on Tuesday!). Thankfully, since the helpline started the reports of poor care and dismissive attitudes are definitely diminishing. Yet just today I spoke to a dangerously dehydrated women whose doctor yesterday told her she didn’t want to admit her as she’s only six weeks pregnant… Umm what difference does that make? She’s been seriously ill for two weeks, cannot keep down oral medication and has barely drank 100 mls of fluid in over 24 hours most of which was vomited up. Her urine is the colour of Lucozade!

But as I say, these cases are becoming rarer… WE ARE HAVING AN IMPACT! For the majority of women I was a listening ear, reassurance that they were on safe medication and giving information about the other options to discuss with their, predominantly helpful, doctors. And I was able to match them with a volunteer. Our volunteers are just incredible! No woman waited more than a couple of hours to be matched and many were matched within about 20 minutes. Their volunteers will now text them at least daily to see how they are, provide ongoing support, a shoulder to cry on an ear to listen and sympathy over being “gingered”. They’ll empower them to advocate for themselves and ensure they know their rights and what treatments are available. They’ll be with them through the long months ahead and some will go on to become friends, living in the same towns and able to collaborate on ways to improve services locally. Hopefully most of the ladies I spoke to this week will also go on to volunteer and fundraise for us.

So whether you are a volunteer or a sufferer or relative or just have an interest in the condition… take heart, things are changing, we are making a difference and having an incredible impact. Keep up the great work and if you’re able please consider donating.

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Hyperemesis Gravidarum - The Definitive Guide by Caitlin Dean

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About Me

I am mother of three beautiful children and wife to a fantastic and supportive husband. I am a nurse, a farmer and a trustee for Pregnancy Sickness Support. I love working hard and spending time with my kids.

About this blog

Information and support for pregnancy sickness and hyperemesis gravidarum. Views are my own and do not represent those of any other organisation. Information provided here should not be a substitute for medical advice. My aim is to raise awareness and encourage sufferers to know they are not alone.

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