Pre Eclampsia support
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Pre Eclampsia support

For Women & their families who have suffered with Pre Eclampsia, Eclampsia, HELLP syndrome, Pregnancy induced hypertension (PIH) and related conditions.
 
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 considering making a complaint about care given -

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smithjackie419
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PostSubject: considering making a complaint about care given -    considering making a complaint about care given -  EmptyFri 01 Oct 2010, 9:22 am

Hi Liz

I was wondering if you could help me, for some time now I have been debating on whether I should make a complaint regarding the consultant who "looked" after me during my second pregnancy. My main area of contention is the fact that despite having severe PE in my first pregnancy he did not put me on aspirin and although I have other issues regarding my care this is the biggy for me as I went on to develop severe PE again and had a very premature birth.

I just feel really really angry, my daughter is still in NICU, she has had numerous blood transfusions, PDA surgery, ROP laser surgery and having more surgery on saturday to try and preserve her sight, numerous infections and ongoing uncertainty as to whether she'll have any long developmental concerns and its grating on me that maybe, just maybe an aspirin could have avoided all this. I feel the consultant who saw me just wasn't that interested, he was really condesending and patronised me regarding my weight and it's because in particular he made such a big deal over my weight (being overweight putting you more at risk of PE) and the fact that I had had severe PE previously I feel that aspirin should have been suggested. If I had known then what I know regarding aspirin now i would have self medicated, but I'm sure the consultant would have been aware of the potential benefits ??

I know complaining wont change anything and I'm not seeking financial gain as no amount of money will change Evie's prognosis but I do feel I would like to raise this - but do you think I'm wasting my time? Has he acted within the clinical guidelines? More than anything I feel let down by my care giver and devastated that my baby girl is having to go through so much Sad Sad Sad
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thaiba2000
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PostSubject: Re: considering making a complaint about care given -    considering making a complaint about care given -  EmptyFri 01 Oct 2010, 12:38 pm


Its hurts doesnt it? To think we put all our trust and faith into the proffessionals who lookafter us when we are pregnant and then to find out that we were not looked after as well as we should have...

I wasnt offered Asprin in my 2nd pregnancy and was continuously told that i wont get it again...

Im pregnant again...i told my doctor as soon as a positive showed on a pregnancy test (4weeks) thinking that i will get care straight away.
Im 6-7 weeks now (calculated form the last period) and there have been no signs of a midwife or consultant! Now it makes me think if i hadnt gone to a PE Specialist and spoke about aspirin and other supplements i could take during pregnancy- my doctor wouldnt know and would have just reffered me to the hospital (as he has done) and its been over 2 weeks that ive been waiting! Your teling me i wouldve had to wait 2 weeks to get some sort of contact from a midwife or consultant with a high risk pregnancy....!?!?!? Rolling Eyes

I know im not making sense at all but i wasnt happy with the care i recieved during both pregnancies and it looks like the 3rd one is going the exact same way!

Im just glad i know alot more about PE now than ever before, i can fight my own corner because i know wha im talking about. Thats why i went to see the specialist to get even more ammunition. I truly believe that if i didnt see the specialist i wouldve gone without any Asprin or calcium or anything. Like i said i told my doctor on the 17th spetember that im pregnant and today is the 1st October...and im meant to be high risk!


I know this hasnt helped you but i just wanted to say i know exactly how you feel. I hope Liz will be able to help you on this because i feel to some extent it will help me too. Im truly nervous about this pregnancy!
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Liz Pidgley
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Liz Pidgley


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PostSubject: Re: considering making a complaint about care given -    considering making a complaint about care given -  EmptyFri 01 Oct 2010, 1:22 pm

Hi ladies,

Im afraid I cant answer whether you should make a complaint or not - only you know in your hearts what is right for you. However, having all the correct information may make that decision making process a little easier for you.

Aspirin has long been a debateable issue. There were some studies in the late 80s that lead to a large multi - centre study called the CLASP trial. It showed that low dose aspirin did help women with early onset PE to progress further in a subsequent pregnancy. For many years to follow this became best practice.

In the early part of the new millenium the CLASP trial was studied again as part of a meta-analysis (cross referencing type study) and started the debate started again. It was said to show that aspirin made no difference, but wouldnt do any harm.

Clearly for women and medics alike, this proved to be very confusing especially as there were no clear or definative guidelines.

This has just changed again! Earlier this week I was asked to look at some evidence provided by NICE for my comments.....

This was my reply..... ASPIRIN UPDATE

As you say Jackie, you felt that the care you were offered was not good enough and the focus was on your weight. However, you also said you felt patronised and the consultant appeared disinterested. On this basis alone you would have valid reasons to raise your concern. No one should ever be made to feel that way regardless of medical need or outcome. Perhaps a reminder to the consultant that he was treating a frightened woman desperate to protect her baby and a little TLC on his part would have gone a very long way.

If you want to make a formal complaint. I would suggest contacting your local PALS. These are the Patient Advisory & Liaison Service and are attached to every health trust in England and Wales. You will find their number in your phone book (usually near the hospitals numbers). They exist for exactly this purpose and use the complaints to data record where areas need to be improved.

I hope this helps and that you and your precious little girl continue to go from strength to strength.

Warm Wishes
Liz
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smithjackie419
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PostSubject: Re: considering making a complaint about care given -    considering making a complaint about care given -  EmptyFri 01 Oct 2010, 4:30 pm

Thaiba, I feel really let down, like you say you put your trust in your care givers and don't question their knowledge. But it really does grate on me that a cheap aspirin I could have brought in Tesco whilst doing my weekly shop could have prevented so much. Even more annoying is that from what I've read and from what Liz has also clarified is that taking aspirin cannot do any harm, if only I'd known..............

My consultant was to be blunt an arrogant man, at my 12 wk appointment he had me in tears over my weight (I'm not huge but could do with losing some), I just feel that he made such a big issue out of my weight and armed with the knowledge that I'd had severe PE in my first pregnancy, aspirin should have been given as a precautionary measure. I felt he viewed me with as much respect as someone with a hardcore drug addiction and all because I'm not a size 10.

Anyway, I've contacted PALS today and made the complaint, if nothing else it may make the consultant involved think about the relevance of aspirin for the next lady he sees who has the same circumstances that I did. My family don't agree with my decision to do this as they don't see it as being helpful but I feel I must even if the outcome shows the consultant acting correctly, I need to know that I have put my feelings across. Sorry for the rant Mad
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*Carole*
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*Carole*


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PostSubject: Re: considering making a complaint about care given -    considering making a complaint about care given -  EmptySun 03 Oct 2010, 7:10 am

Hi there, i've been following your story on Bliss (I think I posted the link to this webiste) and I'm so sorry to hear about all the worries you've had and that your baby is still in NICU. I felt let down by my care, although it was my first pregnancy so I didn't have the benefit of experince to say I was at risk from PE. I don't have any experince of making a complaint but I know Kylie (joseph's mum) on Bliss made a complaint along similiar lines. She was very upset that her doctor had put the emphasis on her weight and not managing her condition as PE was developing. I'm sure if you pm her through Bliss she could give you advice about she went through the complaint. I see from your lastest post you have started the process through PALS. I know that Kylie used PALS. Good luck and I hope that you get some get answers.
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smithjackie419
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PostSubject: Re: considering making a complaint about care given -    considering making a complaint about care given -  EmptySun 03 Oct 2010, 4:02 pm

Hi Carole, thanks for the post I will contact Kylie and see how she got on. Even if its shown that the consultant hasn't made any mistakes or error of judgement I think I need to see it in black and white that the care I recieved was correct and based on up to date guidelines.

I've been debating on whether to say anything for the last few months and I've come to the conclusion for purposes of closure I need to put my feelings across and either way whatever the conclusions that come from this I know I'll be able to draw a line under it Exclamation
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jules
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PostSubject: Re: considering making a complaint about care given -    considering making a complaint about care given -  EmptyMon 04 Oct 2010, 1:37 pm

I'm really sorry that your daughter is going through so much, and that your care was not very attentive.

My understanding is that women with early onset PE are nearly always being offered aspirin in a subsequent pregnancy, but your PE (@35 weeks) may not have been classed as early onset; perhaps this is why the consultant did not offer it to you. Have you considered writing to the consultant himself to ask him to justify the decisions he made? This may or may not help you get some closure.

Unfortunately your 2nd pregnancy was much worse, when most women seem to do better in 2nd pregnancies. I can understand the anger you feel; I don't feel I received great care in my first pregnancy (until the point I was admitted to hospital), and although I expect better care would not have changed the outcome, I will never know for certain whether my baby could be alive today if things had been different.

Good luck whatever you decide.

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smithjackie419
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PostSubject: Re: considering making a complaint about care given -    considering making a complaint about care given -  EmptyMon 04 Oct 2010, 4:34 pm

I've debated with myself for the last couple of months on what to do, I think that based solely on the fact that my previous pregnancy had ended at 35 wks not prescibing aspirin may have been within the guidelines. However he acknowledged at 12 weeks my weight was an issue, between my booking appointment at 8 weeks and seeing him at 12 weeks my blood pressure had gone from normal to high and I just wonder if with these two factors plus having had severe PE in my first pregnancy should have swayed his decision to prescribe aspirin. I know that what's done is done and I'll never know if aspirin could have made any difference in the outcome of my pregnancy but to have an explanation, even if it concludes that he acted correctly would be useful and stop me wondering.

I suppose I also feel anger at the fact that it's unlikely we'll have anymore children because of how this pregnancy ended, from a very selfish perspective i wanted more children but the risk of getting it again and having a baby even earlier is too much of a risk, I do try to remind myself I have been blessed with two Smile

I really hope your pregnancy is going well Jules, I try to remind myself that we are very lucky to have her alive, I cannot imagine the pain and suffering you must of endured and probably still are - I hope and pray this pregnancy is uneventful for you xxx
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