Hyperemesis- changing current practice

[HGActive]

Hey guys

I had HG in my first pregnancy and it was the foulest experience I've ever had. I was shocked at all of the things you all may be shocked by- not being taken seriously, delayed treatment, treatment when you are at your lowest rather then preventative treatment, lack of education amongst friends, relatives and (more importantly) health care professionals. I found that there was limited community support besides a midwife asking if you're OK and then not doing anything when you are. I found that people expected you to be positive when they said 'only 30 more weeks to go'. My big question is- if you wouldn't allow someone to be in pain if there are recovering from some injury or trauma, why would you allow someone to get so poorly that they are clinically dehydrated? I think that the treatment for hyperemesis needs to improve.

But here comes the clincher...

Campaigning for change is all well and good.... but there is next to no research to support change and the research that has been carried out is so poor it's not credible. And the next best thing about this is... there are not even any reliable statistics about how many people suffer from HG. To add to this the only mention of HG in any of the NICE guidelines is associated with the risk of Deep Vein Thrombosis... in short there is no consistency in the treatment of HG across the NHS.

There is currently a petition going around to create the role of the hyperemesis specialist nurse, which would run a clinic that would monitor at risk patients and administer fluids more freely reducing the need of a hospital admission. I would also like to look at the controversial issue of women considering or actually carrying out abortion as a response to HG. I know I went through that thought process and I would like to know how many of you did. I'm also scared witless to have another child and I'm sure that there are many other people like me out there that can back up my case for change.

I would really like to put together a research project to improve HG treatment. Please could you post in this thread or PM me about your experiences past and present and if you feel that HG has effected your life postnatally too.

epetitions.direct.gov.uk/petitions/41291

Also here is the hyperemesis petition

I have signed it. I am suffering just from nausea at the moment, nothing compared to what many go through but it's quite enough for me. Agree with you totally. Good luck.

I think it's a good aim.

I technically didn't suffer personally - although definitely had worse than average vomitting in pregnancy (multiple vomits vast majority of days with a smidgen of unintentional weight loss in first trimester & intermittent dehydration that responded to oral fluids) but was surprised by the range of responses from professionals from anti-taking-anything to people at work wanting to jab me with IM antiemetics..! So in a way I suppose that highlights one of the discrepancies in diagnosis even.

Also from a professional point of view have found the lack of guidelines/consistency frustrating at times! Would also be helpful to have an RCOG patient information leaflet on it (they do for various other conditions...) & the benefits/risks/evidence with specific pharmacological treatments because I've heard fairly differently spiels being given to people about them & there are licensing issues with some.

Some hospitals do have 'ambulatory'/short stay type areas e.g. on a Gynae ward for daytime IV fluids/antiemetics etc. but again quite variable. Might be worth doing a survey of what's out there?

Although some cautions with this type of model/specialist nurse clinic role would be:

• Is the workload sufficient to warrant one or would it be something that ended up being centralized... & travelling with HG obviously not ideal. In a busy London hospital we'd have perhaps up to 3 inpatients with excessive vomitting in pregnancy at any one time - usually 1-2.

• Determining patient eligibility for this service - I had plenty of 'HG' referrals from other doctors that turned out to be more UTI / Norovirus / secondary to e.g. coughing in other intercurrent viral illness / deterioration of long standing reflux etc. with the occasional involvement in more unusual eating disorders/mental health contributory factors and so the management wasn't necessarily one-size fits all and continuing a generic antiemetic cocktail with a 'HG' label after discharge wouldn't have necessarily been in their best interests.

Morgan Wanting a clinic is jumping the gun a bit, but this is considerably cheaper then consultant lead care and probably preferable. I think that it is more important that the research gets done and a gold standard is identified. The attitudes towards HG in general are variable and standardisation would be good.

I am also a HCP and I thought about the difficulties of this kind of service not having enough people, but I thought that perhaps the role of a hyperemesis nurse could become a 'dehydration specialist nurse'. This could take the pressure of wards and nursing homes with patient/residents with simple dehydration.

This is all a million miles away and depends upon research...