anyone tried to get their pregnancy notes

[Bexybear]

from a previous birth?

I had horrendous experience during birth of DS 5 yeas ago, possibly made worse by a clincal trial i was on. I never recieved any feedback or a debrief at the time. Now at 30 weeks (and despite two years of councelling ) im increasinly worried about giving birth and also quite angrey about the clincal trial. I dont even know what drug i was given. I'd like to see my notes in the hope that they will give some clues about what went wrong last time.

I now live in a different area and have no idea about how or even if its possible to get these notes. Has anyone tried and if so how did you go about it and did you understand them when you did look at them?

Or am I being daft to assume this is going to help?

Like you, I had a pretty difficult birth first time around. I was left not knowing quite what had gone 'wrong'. When I became pregnant with DC2, I wrote to the previous health authority (I had moved to a different part of the country in the meantime) asking for my notes. Very shortly afterwards, they were sent to me (I think perhaps I had to pay a nominal fee to cover the costs.) Even though I didn't understand 100% of what was written, it was soooo useful for me to see what had happened.

It was something I felt I needed to do before giving birth again. It was great for me and put my mind at ease.

If you contact PALS at the old hospital they will be able to send you the form
You may be charged up to £50 for the photocopying

also, if you don't understand everything (particularly the drug you were administered), I'm sure your current GP would go through your notes with you.

Cripes op; no wonder you are worried..
personally, I got my notes copied each time; they proved very useful with each subsequent birth for the mw's to flick through during labour. I cannot imagine why this isn't standard, rather than locking away a very important stack of notes that in subsequent pregnancies, mw's do not have access to..
Good luck with everything

Thanks everyone

Eldon I will try PALS at old hospital first thing tomorrow. Just found their info on the hospital website

glad it turned out to be useful for you Poutine - hoping it will be for me

and yes now you come to mention it Catbus it might help to show the notes to my midwife!

I might report back if i find out there was a link between the drug i took and my experience of labour....hmmmm

Bexy, you should have been given a copy of the consent form from the clinical trial you were involved in, at the time you signed it. Do you still have it? That will give you information on the drug you were given (or it was a double-blind study, the consent form will give you information on the different types of drugs you could possibly have received as part of the trial).

It wasn't a Misoprostol trial was it? (drug they were trying for induction)

Pepperoni - Not sure many ethical protocols were followed although i remember signing a consent form. It was explained that i was being given an oral induction pill and they may have given me an information sheet but i no longer have it (im usually quite organised with paperwork) and as far as i can remember they didn't. In fact they never referred to it as a clinical trial at all. I just put two and two together when they said they didnt know if I would get the drug or a placebo.

Eldon - yes how did you guess? or at least I'd narrowed it down to misoprostol or mifepristone (sp?) from some rather random googling of drugs used for oral induction.

By the way having phoned PALS i then got my GP to apply for the notes as you then dont have to pay the 50 quid photocopying... Really interested to see what they send. As it was a double blind trial its unlikely there will be any reference to the drug in the preganancy notes themselves and GP thought they wouldnt send any info on the trial at all in case i then decided to sue

You can also get an appointment with a consultannt midwife.. I'm not sure if it is available in all areas, but I've recently had a 45 minute appointmeent going over my notes from last pregnancy and what decisions were made and why.

She also made notes, and sent a letter to my consultant and midwife with my concerns, birth plan etc. It was very helpful

aims article here

Eldon thanks for that link - its not good is it? lots of things fit but ive got to know for sure what drug i took...

Hopefully the notes will give you some answers

a couple are suing the hospital over use of misoprostol (they sadly lost their baby)

www.hackneygazette.co.uk/content/hackney/gazette/news/story.aspx?brand=HKYGOnline&category=news&tBra nd=northlondon24&tCategory=newshkyg&itemid=WeED25%20Jan%202010%2014%3A16%3A09%3A177

a bit different from your situation, in that the hospital seemed to use misoprostol out of the context of a clinical trial.

Oh goodness

That poor couple... how b*dy awful for them.

The trial i was on was 5 years ago. Apparently the Homerton (at least according to a recent thread on here) continued to give the drug to women to induce labour.

they certainly wont be giving me my trial notes if thats the drug i was given.

Don't see how they can avoid it ... as far as I am aware the only valid reason for denying a medical records request is that the grant it would be likely to cause you or someone else serious harm.

wish I wasnt so late on this chat. I am a local NCT teacher and i am making a presentation to the Homerton Maternity Services Liaison Committee tomorrow raising our concerns about the way in which Homerton is prescribing oral misoprostol for induction in labour. You should all know, however, that Homerton has categorically stated that no-one has ever complained about the drug! If any of you who have experienced it wish to complain please do so. It might make them think a bit more about administering such a dangerous drug in such a cavalier way.

I can be contacted through the NCT (Hackney and Islington Branch - I am one of 3 teachers) if anyone wants to talk about it or wants me to put their story to the hospital.

Whether you had the placebo or not won't be in your normal medical records if it was a double blind trial. Do you have a copy of the consent sheet? It should say on there whether you can get trial information afterwards or not (quite often you sign away being able to do this as otherwise trials are impossible to run).

You could always sight the Freedom of Information Act to get the information.

They may state that you can see the records and take notes but not photocopy or take them though.

Freedom of Information doesnt apply to medical records.

That Hackney Gazette article is horrific. I was given that drug at Homerton by a consultant with a nod and a wink. It didn't have any effect, thank goodness, but when I think that DS had had tachycardia at 36 weeks and I was already on a drug to regulate this I feel quite sick at how things could have been much much worse. I was given it at night and left alone to sleep all night with no monitoring at all.

How on EARTH can a hospital administer unlicensed drugs like this?/???

Sorry OP, I completely hijacked your thread in my anger! I thought about getting my notes (I am at a different hospital for this my second birth) but decided not to - I wanted to wipe the slate clean this time and I have so much guilt and resentment over my experience first time round that I personally didn't feel it would benefit me to go over it all again.
However I can completely understand that some people would benefit from 'closure'.
Whatever you decide, you have the right to get hold of your notes after an admin fee

But remember that whether you had placebo or not won't be in your notes (if it was a double blind study).

In the UK and Europe there is a difference between unlicensed drugs and drugs without a marketing approval for a specific condition (e.g. drugs not specifically licensed for a particular use). Drugs are licensed and then they get marketing approval for specific uses. The manufacturing company have to get marketing approval for new uses if they want to market the drug for that use, but not having marketing approval doesn't prevent doctors using them for other purposes. Many many many drugs are used for uses that they do not have marketing approval for and this is absolutely fine - it's up to doctor's discretion. It can be very hard (and expensive) for drug companies to get marketing approval for many uses, so they tend not to bother in many cases. If doctors stuck to only using drugs that have the specific marketing approval for what they're treating, we would be extremely limited in drug choices across the board.

It's a bit different to in the states where drugs get FDA approval for individual uses more easily, so doctors tend to try to stick with drugs that have FDA approval for the specific condition or problem they're treating.

You can't really sue a doctor for using a drug without marketing approval for a specific use unless they were being damn stupid about it and you weren't informed off the risk. It's horrific what has happened with this trial, but what is horrific is that patients weren't properly informed of the risk and aftercare didn't reflect the medication given. Hence why the couple in that article are suing for neglect of care not for suggesting the drug in the first place.

Sorry if it's a bit off topic but I've had some experience of how the pharmaceutical approval process works and the "unlicensed drug" issue is a common misconception.

In this case, you'll need to be chasing the trial directors for information on what drug you were given (or not) and the hospital for information or acknowledgement of fault on where the aftercare fell down.