Turning Sufferers into Supporters - Guest Post
As the Pregnancy Sickness Support Volunteer Conference gets closer we are confirming the details of the day and getting the word out to as many current and future volunteers as possible.
The charity is lucky to be supported by a wonderful PR expert Jo Crosby who has suffered with the condition herself and will presenting at the conference. Jo has put together a fantastic press release about the event.
BRISTOL TO HOST PREGNANCY SICKNESS SUPPORT CONFERENCE ON 14th MAY
Conference Follows Opening of Pregnancy Sickness Unit at St Michael’s Hospital in Bristol and
Aims to Turn Sufferers into Supporters and Recruit More Volunteers in the South West & Wales
CORNWALL, 28th April 2016: On Saturday 14th May, Bristol will host the third conference for volunteers and supporters of the charity Pregnancy Sickness Support. The conference is a hands on training day for volunteers, enabling skills and knowledge development alongside networking and sharing opportunities. Attendees can meet the Patrons and Trustees and have the opportunity to learn more about getting involved with the international research agenda for Hyperemesis Gravidarum and to find out about volunteering for the charity.
The conference follows on from the opening of a new hyperemesis unit for pregnant women at St Michael’s Hospital in Bristol, which aims to improve the treatment of Hyperemesis Gravidarum. Pregnancy Sickness Support welcomed news of the new unit at St Michael’s, although it is one of only 17 in the UK and Ireland and the charity continues to campaign for more units plus better treatment and support for women with the condition.
“We have previously hosted conferences in Nuneaton and Birmingham and these have been a tremendous success in raising awareness of the condition, educating our supporters and helping to build a bigger network of volunteers,” said Caitlin Dean, Chairwoman of Pregnancy Sickness Support. “We will have some inspiring speakers join us at the conference and it is also great opportunity for the speakers to also learn more by meeting with those who have directly suffered from the condition.
“We now have a network of over 200 volunteers across the UK, but we are looking for more people to join us and help support women with this debilitating condition. We currently have a shortage of volunteers in Wales and at this very time we are supporting a number of women in the South West in their pregnancies. We would be delighted to welcome current volunteers, those interested in volunteering or finding out more and Midwives and Medical Professionals to the conference so we can ensure that women suffering with this condition get the very best care and support during their pregnancy.”
Founded as a Charitable Trust in 2002, Pregnancy Sickness Support is a registered UK charity working to improve care, treatment and support for women suffering from Nausea and Vomiting in Pregnancy and the severe form of the condition; Hyperemesis Gravidarum. Pregnancy Sickness Support is a small charity, relying heavily on donations and fund-raising from sufferers and the work of volunteers.
Nausea and vomiting in pregnancy affects 70-80% of pregnant women to a greater or lesser extent. Over 30% of women in paid employment need time off work and 1 in 100-150 women will be admitted to hospital due to the severity of their condition. This extreme end of the nausea and vomiting spectrum is called Hyperemesis Gravidarum, which is a severe and potentially life threatening condition which can have a profound effect on the sufferer’s health and wellbeing.
Volunteers can support the charity in a number of ways, including fundraising, awareness raising and peer supporting enabling them to develop and use their knowledge and skills to gain positive outcomes from their experience of Hyperemesis Gravidarum. Volunteers had this to say about their work for the charity:
- “As volunteers we may not be able to find the cause and cure for HG, but one thing we can do is lessen that feeling of isolation and not being understood. I longed for such support during my first pregnancy... and vowed to myself at that point I would try to find fellow sufferers and give them the help I never got. Second time round I was bombarded with love, information and support thanks to Pregnancy Sickness Support and also Beyond Morning Sickness. The difference these people made was indescribable and I feel so privileged to be able to support others in the same way. To offer them hope, give them information at critical times, and keep shining a torch through their dark tunnel is such a rewarding, and also therapeutic, thing to do. In some cases I have been told the support has made the difference between life and death. Volunteers are crucial and I feel so privileged to be one,” - Heather Miranda.
- “It helped me feel useful again. Sharing a common knowledge and experience has been healing in many ways,” - Katy Roberts-Dempsey.
- “A Pregnancy Sickness Support volunteer helped me get survive Hyperemesis Gravidarum and, without a doubt, I couldn't have done it without their support. Volunteering means I might be able to support someone else going through hell and, hopefully help them cope even just a little bit, until it's over,” – Lisa Lee.
- “It's great to be able to give something back to a charity that helped me through my pregnancy. It's rewarding supporting a fellow sufferer,” - Amy Seemore.
The conference will take place at the Engine Shed, Station Approach, Bristol, BS1 6QH, starting at 9am on Saturday 14th May and concluding at 4pm. The conference will be opened by Pregnancy Sickness Support Patron Lady Cumberledge (NHS Maternity Review Chair).
Tickets for the conference are priced at £20 each and are available online here. Bursaries are available if cost is an issue to attending and further information is available on the Pregnancy Sickness Support website here. There are only 50 tickets remaining and booking in advance is required.
Full information about the conference can be found online here.
For further information please contact:
East West Communications Ltd
T: 07131 85975
Jo Crosby is a freelance public relations consultant and writer. She has worked for Reuters, Getty Images, A1GP, Financial Times and Time magazine. She can be found tweeting @jocrosbypr
TICKETS / CONFERENCE ENQUIRIES:
Pregnancy Sickness Support
What research do you want to see?
I’m feeling a huge weight of responsibility at the moment. You see we have finally got so key funders interested in researching treatments for hyperemesis gravidarum… woohoo I hear you say! Except that it’s not quite as simple as that. The problem is, I don’t believe the research they are proposing is clinically relevant or helpful to women with HG in the UK at the moment. And I have concerns over the ethics of the trial they are proposing (the ONLY trial they are proposing). The good news is that I'm involved as an "expert patient" advisor to the funders on which team of researchers proposals they will fund to go ahead.
I have three responsibilities…
- As the chairperson for Pregnancy Sickness Support it is my duty to ensure the reputation of the organisation is maintained and enhanced as a reputable patient representative organisation which women, health care providers and the public can trust and rely on.
- As Spewing Mummy I feel a weight of responsibility to give a representative voice to UK women affected by hyperemesis gravidarum and ensure that their voices are heard through me.
- As a registered nurse (and ethically motivated member of society and tax payer) I have a duty to encourage public money to be used wisely and purposefully and to that end that ensure research is purposeful and meaningful.
However, I am concerned that I don’t truly know what you, my audience, want from research in the UK and so I would like a conversation with as many of you as possible. Please get involved, comment below and give me your thoughts so that I may represent them accurately and loudly with the people in power.
The current research suggestion is for a Randomised Control Trial of Metocloprimide verses Ondansetron. The argument in favour is that we don’t ‘know’ which is better as a second-line treatment for those women whose symptoms aren’t controlled with cyclizine. Is this a research project you would like to have a huge amount of money invested in? Do you think that the answers we can get from it will make a big difference to you? Do you think we already know the answer of which drug is better and therefore don’t need a trial like this? Would you be willing to take part knowing that you might get a placebo drug (ie. A fake drug with no effect) for a period of time?
If this is not the sort of research you feel is of clinical importance at the moment then what would you prefer to see? Some ideas are:
- Ondansetron verse Steroids
- High does Ondansetron (ie. Up to 32mg) verse current doses (up to 16mg)
- Omeprazole (the strong antacid) combined with antiemetics verses placebo (I think omeprazole is massively under-utilised and can improve not just the symptoms themselves but the trauma of the symptoms, because let’s face it puking pure acid out of your nose is traumatic! And it’s the acid that hurts our oesophagus and wrecks our teeth)
- Rapid rehydration verses standard rehydration protocols
- Early pre-emptive treatment verse waiting until symptoms are severe
Bear in mind that the potential funders in question only fund clinical trials of this nature (like drug X verses Drug Y or verses placebo) rather than exploratory research such as causes of HG, but, that getting such research funded would allow money for qualitative aspects of the trial also.
My concerns are thus:
- We know Ondansetron is better and there’s no need to do a long clinical trial to prove it, we know this from the use of anti-emetics in other, non-pregnant, conditions and from clinical experience.
- The reason doctors are reluctant to prescribe ondansetron is not because they don’t know it works but because they are not convinced it’s safe because they haven’t read papers like Pasternak (2013). A trial of this size won’t have enough power (ie. It’s not big enough) to show the safety of the drugs, it would only be about which is more effective. Therefore it is education that is needed rather than research.
- A placebo arm and delaying ondansetron is ethically unacceptable
However, I want to know your thoughts on it… Do you want to know definitively which is better, metoclopramide or ondansetron and would you be willing to take part in a drug trial where you might get a placebo (dummy) drug instead of a real one, even if just for a couple of days to find out the answer?
If not then what do you think the top priorities for HG research are? How would you like to see research money spent to improve the lives of women affected by hyperemesis gravidarum? What research can we do now that will ensure our daughters don’t suffer the way we have?
Pasternak, B. (2013) 'Ondansetron in Pregnancy and Risk of Adverse Fetal Outcomes (vol 368, pg 814, 2013)', New England Journal of Medicine, 368(22), pp. 2146-2146.
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In conjunction with Pregnancy Sickness Support and Plymouth University I am looking for women who have been treated for HG in the last 2 years in the UK to take part in a research survey. Please click here to find out more.
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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