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Anomaly Scan Campaign

24

Comments

  • #32
    madeinamerica
    Registered Users Posts: 787 ✭✭✭madeinamerica


    This is a great idea.

    I've been pretty surprised reading about all the different experiences and treatments depending on the hospital that ye have been posting here.

    I'm not in the Irish system for this baby so I can't really contribute directly. But I may be able to help with regards access to research papers that are behind a pay wall, I can get a lot through work so just PM me the link if needed.


  • #33
    madeinamerica
    Registered Users Posts: 787 ✭✭✭madeinamerica


    lazygal wrote: »
    Women not dying in childbirth is a very dismal way to asses the relative 'safety' of maternity services. And I understand Ireland had its own way of recording maternal mortality which has been changed and will leave us middling in terms of comparison with other countries.
    I had a very mixed experience with nursing and medical staff in Holles Street. I didn't find all of them fantastic, in fact there's one consultant I will request not to be treated by should I have any more children there.

    Yeah, this is true. Apparently, for one, the time period that was used was different between different countries, with Ireland using a shorter time period after birth so the records were not comparable and it really cannot be claimed to be safer.


  • #34
    madeinamerica
    Registered Users Posts: 787 ✭✭✭madeinamerica


    lazygal wrote: »
    I thought HS offered it to everyone too.

    I've heard anecdotes about hospitals asking women why they want a scan when nothing can come of it except for continuing the pregnancy. Such attitudes need to be robustly challenged. Scans aren't just about the foetus; they can show up issues like placenta previa which can be serious for a woman.
    How Strange wrote: »
    I think it's appalling that these aren't offered routinely. It alerts the medical staff to any potential problems and it's a huge reassurance for the parents when everything is ok. However, I always wanted to know either way so we could prepare ourselves if there was something wrong.
    lazygal wrote: »
    I have been thinking about what strategy is best.

    All great points here.

    As well as the best strategy for how to do it, there probably needs to be a consensus on what is desired and why. Honestly, while it was really important for me to find out all was ok (or at least mostly ok in our case), the "reassurance of the parents" isn't going to hold much water with the powers that be, or a lot of taxpayers. (I recall someone even posting here on another thread along the lines of 'sure there were no fancy scans in the '80s and all was fine so what are ye complaining about', there could be a lot of that backlash).

    IMO it really needs a strong, clear message showing something like:
    a) the kinds of anomalies that can be detected by these scans, both in mother and fetus;
    b) how prevalent these anomalies are in both high-risk pregnancies and in normal pregnancies;
    c) what good can come from this information from the scans - what health issues can be prevented or minimised or treated;
    d) what are the negative outcomes if anomalies are missed due to the lack of a scan and let develop or not treated.
    e) what percentage of pregnant women in Irish hospitals do not get such scans?

    If there is any data (and I'm sure there is, from Ireland or other countries) showing that the 20w anomaly scans can help treat or reduce health problems and even save money in the long run, then that is what will really convince people in general that these scans should be routine and across the board.


    The issue with "what do you want a scan for when there's nothing you can do about it except continue the pregnancy" is something that may actually be in opposition to that amendment where women are free to get information about abortions and travel etc (I don't know the name of it). If restricting a woman's knowledge about a possible non-viable pregnancy is the reason for not giving a scan, then that is possibly restricting her rights under that amendment and may be a human rights issue. I know nothing about the law, I'm just guessing here, but it might be an angle to look at it from. Any legal eagles know more about that?


  • #35
    madeinamerica
    Registered Users Posts: 787 ✭✭✭madeinamerica


    diveout wrote: »
    I could see how it could look that way.

    However, when I was pregnant I couldnt and didn't get the 12 week dating scan in Ireland, which at the time and still is, in my own country considered to be part of a regular pregnancy monitoring and is considered crucial. And this was because the maternity hospital was backed up and overloaded.

    Now my child is in a class of 35 kids due to the babyboom at the time, and there have been babybooms since, which neither maternity hospitals nor schools have caught with to accommodate.

    With the history of maternity medicine in Ireland, it wouldn't be unreasonable to suspect the motives for such lack of scans.


  • #36
    Isolt
    Registered Users Posts: 521 ✭✭✭Isolt


    I've had a totally different experience with Holles St. I think they set a great standard (obviously I can only speak for the care I've received so far).

    They were thorough and compassionate when I lost my first baby. When I fell pregnant again I was given an early scan at 8 weeks for this pregnancy to date it and make sure all was well. Had another scan with consultant at 12 weeks and have another next Wednesday (the anomaly scan). *fingers crossed all will be well*
    I also had to attend casualty and was scanned then as well as hearing the heartbeat via doppler.
    I have two cousins who are attending Kilkenny hospital for their pregnancies and they have not had anywhere near the same level of care given to them. One suffered bleeding in the second trimester and was not scanned until the following week. This is INSANE. Wrong on so many levels. Thankfully her little one is doing well now and there was nothing sinister behind the bleeding but the hell she must have felt waiting so long for a scan was cruel and absolutely avoidable in my opinion.
    I totally agree with this campaign (thank you lazygal for starting it). The same care should be afforded to women countrywide!


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  • #37
    ShaShaBear
    Registered Users Posts: 5,528 ✭✭✭ShaShaBear


    Ready to hop on board with this too. Currently in Cavan MLU with combined public care. While the care itself I am receiving is absolutely fantastic, I got one scan at 12 weeks (and was 14 weeks by the time the appointment was scheduled) and will get another at 32 weeks (I will be 33 weeks by the time the appointment has rolled around).

    I was shocked when they told me I wouldn't get any scans in between. I simply had to wait until I could feel movement to get assurance that the baby was still alive! I paid for TWO private scans in that time for reassurance.


  • #38
    nikpmup
    Registered Users Posts: 2,510 ✭✭✭nikpmup


    Isolt wrote: »
    I've had a totally different experience with Holles St. I think they set a great standard (obviously I can only speak for the care I've received so far).

    They were thorough and compassionate when I lost my first baby. When I fell pregnant again I was given an early scan at 8 weeks for this pregnancy to date it and make sure all was well. Had another scan with consultant at 12 weeks and have another next Wednesday (the anomaly scan). *fingers crossed all will be well*
    I also had to attend casualty and was scanned then as well as hearing the heartbeat via doppler.
    I have two cousins who are attending Kilkenny hospital for their pregnancies and they have not had anywhere near the same level of care given to them. One suffered bleeding in the second trimester and was not scanned until the following week. This is INSANE. Wrong on so many levels. Thankfully her little one is doing well now and there was nothing sinister behind the bleeding but the hell she must have felt waiting so long for a scan was cruel and absolutely avoidable in my opinion.
    I totally agree with this campaign (thank you lazygal for starting it). The same care should be afforded to women countrywide!

    I had a similar experience in Holles St, 1st appointment at 7 weeks, then 12 weeks, got a mini scan at both of those, anomoly scan at 20 weeks, and a scan at 33 weeks at casualty (lack of movement) and again at 36 weeks (kidney infection) I had a mini scan at every outpatient appointment too, and this was under public care. I would have paid for private scans if I hadn't had this level of care.


  • #39
    Neyite
    Administrators, Politics Moderators, Society & Culture Moderators Posts: 25,947 Admin ✭✭✭✭✭Neyite


    nikpmup wrote: »
    I had a similar experience in Holles St, 1st appointment at 7 weeks, then 12 weeks, got a mini scan at both of those, anomoly scan at 20 weeks, and a scan at 33 weeks at casualty (lack of movement) and again at 36 weeks (kidney infection) I had a mini scan at every outpatient appointment too, and this was under public care. I would have paid for private scans if I hadn't had this level of care.

    And that is what the HSE is banking on - that we stump up for these privately. But we shouldnt have to. And has the knock-on effect of those who are struggling financially and cannot afford a series of private scans to miss out on vital information about their pregnancy.

    Not critical of you by the way, I'd find the money somewhere to get a scan I needed, but we shouldnt have to.


  • #40
    nikpmup
    Registered Users Posts: 2,510 ✭✭✭nikpmup


    Neyite wrote: »
    And that is what the HSE is banking on - that we stump up for these privately. But we shouldnt have to. And has the knock-on effect of those who are struggling financially and cannot afford a series of private scans to miss out on vital information about their pregnancy.

    Not critical of you by the way, I'd find the money somewhere to get a scan I needed, but we shouldnt have to.

    I absolutely agree. My OH's mother put my son on her VHI policy when he was born. While I'm glad that should he need, say, grommets when he's older he won't have a stupidly long wait, it enrages me that he would have had to wait if his granny wasn't paying for him. Same goes for scans - I would have found the cash to get them if they weren't provided, but they should be standard across the board.


  • #41
    Millem
    Registered Users Posts: 7,729 ✭✭✭Millem


    nikpmup wrote: »
    I absolutely agree. My OH's mother put my son on her VHI policy when he was born. While I'm glad that should he need, say, grommets when he's older he won't have a stupidly long wait, it enrages me that he would have had to wait if his granny wasn't paying for him. Same goes for scans - I would have found the cash to get them if they weren't provided, but they should be standard across the board.

    It really is a joke, saying that I am too much of a scaredy cat to cancel our policy! So I always shop around every year but it is getting very very expensive


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  • #42
    How Strange
    Registered Users Posts: 6,339 ✭✭✭How Strange


    I get my health insurance paid through my job but my husband doesn't. I heard a consumer guy talking on radio 1 a couple of years ago and he said health indurance is more important for kids than adults so cancel your own first if you can't afford it.

    I know of someone who cancelled the health insurance and thir child needed grommets. The alternative is to wait up to 7 years with HSE as they don't consider it essential anymore.

    I rang corn market insurance this year as the health insurance premium for my husband and son jumped and I had to add my daughter too. They have the hospital cover only so no day to day benefits. They did all the checking and I moved them to glo health. Both kids are free so we saved up to €600.


  • #43
    lazygal
    Registered Users Posts: 12,644 ✭✭✭✭lazygal


    That's weird, I heard the opposite, that there's no private hospital for children in Ireland so health insurance for them isn't really worth it. You still have to pay consultant fees for children anyway. My children got vaccines which weren't covered by health insurance so I don't know what benefits there are to having them on our policy.


  • #44
    How Strange
    Registered Users Posts: 6,339 ✭✭✭How Strange


    There's no pediatric private system but Insurance is important for example if your child needs grommets or has to have their tonsils out. The waiting list is huge on the public system but with health insurance you can go to a private clinic and have them done within a couple of weeks of diagnoses.

    If your child needs grommets and you're at the mercy of the public system then he/she will have speech delay, problems starting school etc as they won't be able to hear what's going on. I think it's shameful that the HSE no longer consider it an essential procedure but elective. Almost as if it's a nice to have so you can wait a while. Once again they're probably hoping parents will pay €4k themselves or get health insurance to cover it.


  • #45
    How Strange
    Registered Users Posts: 6,339 ✭✭✭How Strange


    Also I brought my son to the private clinic in Crumlin when he was 2 to check if both testicles had descended. I got an appointment within 2 weeks as opposed to an indeterminate timescale on the public system. I don't know what the next stage would've been if there was a problem but it was a reassurance to me that he was checked out and signed off within 2 weeks of the gp noticing the problem. I paid €150 I think and I got €75 back.


  • #46
    Millem
    Registered Users Posts: 7,729 ✭✭✭Millem


    How Strange wrote: »
    I get my health insurance paid through my job but my husband doesn't. I heard a consumer guy talking on radio 1 a couple of years ago and he said health indurance is more important for kids than adults so cancel your own first if you can't afford it.

    I know of someone who cancelled the health insurance and thir child needed grommets. The alternative is to wait up to 7 years with HSE as they don't consider it essential anymore.

    I rang corn market insurance this year as the health insurance premium for my husband and son jumped and I had to add my daughter too. They have the hospital cover only so no day to day benefits. They did all the checking and I moved them to glo health. Both kids are free so we saved up to €600.

    Be careful with cornmarket, they can only sell glo and aviva. They tried to get me to move to glo even though laya were cheaper and better cover (at my time of renewal). I had very low tolerance at the time (sleep deprivation) as my baby was only 4 weeks old and got very annoyed with them and asked them why are they trying to sell me a more expensIve policy with less cover? She admitted that they can't sell laya or vhi! I was really really annoyed at the time!


  • #47
    January
    Closed Accounts Posts: 23,865 ✭✭✭✭January


    Waiting lists in this country for children are a joke (2 years for ENT, 2 years for occupational therapy, 2 years for speech therapy, 18 months for cardio, imagine a child with a possible heart condition having to wait 18 months to be even diagnosed!). But that's not what we're here to discuss...


  • #48
    lazygal
    Registered Users Posts: 12,644 ✭✭✭✭lazygal


    Yeah back on topic I definitely get the impression the HSE and maternity services are counting on people getting the money together for private early dating scans and anomaly scans. We got private early scans both times and our consultant told us 99% of her patients do the same.


  • #49
    AshAdele
    Registered Users Posts: 108 ✭✭AshAdele


    count me in! i paid for a private anomaly scan yesterday as CUMH do not offer them.


  • #50
    daveohdave
    Banned (with Prison Access) Posts: 483 ✭✭daveohdave


    Myself and the wife will support this. We were spoiled the first time around, our son was part of the Scope study so we got lots of good quality scans, allergy checks, etc; so we were surprised and pissed off when number two came along and we only seemed entitled to one scan, which to be honest was pretty half-assed in comparison -- swish-swish-gluck. We were genuinely concerned because I'm in my early forties and she's in her mid-thirties, but we weren't able to get a scan even privately, because all of the private clinics were completely booked up. She wangled another scan in the end by basically crying at them, but it shouldn't have to be that way.

    She's currently pregnant again and we paid for a nuchal scan again because of age, and that came back positive - scary positive - and a second by the consultant came back the same, however the scheduled scan in the hospital has shown the folds to have gone away, thank feck. If we hadn't had the first scan(s) though, we wouldn't have been aware of the higher risk, and we may not have bothered with an anomaly scan. But at least now we don't have to pay for it, the consultant that did the private scan has recommended it to the hospital.

    TL;DR They should be the default. People shouldn't have to worry like this.


  • #51
    lazygal
    Registered Users Posts: 12,644 ✭✭✭✭lazygal


    I have contacted AIMS and sent a link to this thread. Hopefully we can get the ball rolling on this.


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  • #52
    psychnurse
    Registered Users Posts: 7 ✭psychnurse


    I can't really help with the care in Ireland as I am living in another European country at the moment, but I can tell you about our standard of care here. I am 25 weeks on my second pregnancy here and the care is excellent. You get scanned at your very first appointment (this is important to me as I have very irregular periods and to go by my dates has proven to be very inaccurate for both pregnancies). You are then seen by a midwife and a doctor every 4 weeks until 27 weeks, every 3 weeks until 35 weeks and then weekly until birth. A 12 week NT scan and 10 week NT bloods are standard (abortion is illegal here, but not for FFA) and an anatomy scan is standard also. From 39 weeks you get a CTG every morning until birth to monitor the baby. I know there is debate as to whether this is necessary or not but I had some issues late in my last pregnancy and this was vitally important in my case. A glucose test is standard also.

    Between these two pregnancies we were debating whether or not to return home to Ireland, and I have to say the prenatal care was a huge factor for us NOT to come home. My local hospital would have been Limerick Maternity and I don't think I could have coped with just two scans, neither of which being an NT or anatomy scan. The care I receive here is through the public health sector and I cannot fault it for one second. It is always scary having a baby in a country that isn't your own, but right now I feel it would be far scarier to come home and have a baby.


  • #53
    madeinamerica
    Registered Users Posts: 787 ✭✭✭madeinamerica


    Thanks psychnurse, great to see how other European systems do it. IMO such comparisons would be very useful in stating the case (and perhaps shaming some of the powers that be into change).

    I'm not much use as I'm currently in the US and while I am getting more scans, appointments, tests etc than I would at home, it is hard to compare as it depends on your health insurance here. I'm just lucky I get kinda good health insurance with my job. I dread to think what it is like for pregnant women (or anyone) without it. I hope that Ireland never copies the US system as in general is it way, way worse than Ireland. That being said, we can still do better and I now would think twice about where I'll have my next child.

    Can you explain some of your terms for me? I'm not familiar with CTG, FFA. I guess NT is nuchal (sp?) translucency? First-timer here. Thanks.


  • #54
    psychnurse
    Registered Users Posts: 7 ✭psychnurse


    CTG is CardioTocoGraph. I think it is called a Non Stress Test too. Where they monitor baby's heart rate and movement for 30 minutes. I had pregnancy induced hypertension and spent 6 weeks on betablockers and bed rest and had a LOT of CTGs in my last pregnancy. I was obviously concerned for baby and myself during this time but the doctors were amazing. They wouldn't even discuss induction with me and said unless something serious happened with my blood pressure I would be left go 14 days over because they didn't want to risk an unnecessary section if the baby wasn't ready to come out. As it turns out I was induced at 40+3 because bed rest and meds were not keeping my blood pressure controlled but it was an on the spot decision when I went for a CTG one morning. I know a girl in Ireland who is currently due the same time as me and has had her induction date from 16 weeks.

    FFA is Fatal Fetal Abnormalities. The country I am in is very religious, far more so than Ireland yet they don't believe in making you carry a baby to full term that won't survive. And yes NT is the nuchal translucany.

    What is very amusing to me is that my European Health Insurance Card is what covers my care here (I am still technically an Irish resident as I am on a leave of absence from the HSE, so I am entitled to use it for the duration of my stay here) and the bill for my last pregnancy was sent to Ireland. So they are paying for me to get far superior care here, instead of, in my opinion, substandard care at home. Having spoken at length with the Irish embassy here I know that many Irish women have been in the same situation as me and we all were advised to take advantage of using the card. It must be the same in other European countries too.

    I don't know did I clarify in my previous post but I get scanned every time I see the doctor, so I think I get about 15 scans in total throughout the pregnancy. They are quick scans most of the time, but even these have shown up issues, such as the beginning of incompetent cervix, in a friend of mine. Again this time around I have pregnancy induced hypertension and the placental blood flow is checked every single time I go to the doctor as it can cause growth restriction. I had to be referred to nephrology after my 10 week appointment as there were some abnormalities with my bloods and I was given an appointment for 2 days later. Not because I am pregnant but because that is how quickly you are seen in the public sector here.


  • #55
    lazygal
    Registered Users Posts: 12,644 ✭✭✭✭lazygal


    I hope its ok with mods if I post the reply I've received from AIMS as follows:

    Thanks so much for getting in touch and for sending us on the thread. AIMS Ireland also has serious concerns about the fact that there is no national policy to ensure routine anomaly scans are available to all pregnant women in Ireland, should they wish to avail of them.

    Although we have no national guidelines in Ireland on ultrasound during pregnancy, the NICE Guidelines in the UK are evidenced-based and considered best international practice. They recommend that if a woman chooses, she should be offered an early pregnancy scan between 10 - 12 weeks to date the pregnancy and then another scan between 18 - 20 weeks to screen for structural anomalies. They further recommend that no routine ultrasound scanning should take place after 24 weeks until a pregnancy has reached over 42 weeks. The guidelines are available at the following link: http://www.nice.org.uk/nicemedia/pdf/CG062PublicInfo.pdf It is a detailed document, so you might find the information you are looking for quicker if you searched for the term "ultrasound".

    You might also be interested in the following article that was published in the Evening Herald in January which says maternity units in Ireland are breaching rules for foetal scans.

    http://www.herald.ie/news/maternity-units-breaching-rules-on-foetal-scans-29892335.html

    If you were to begin a campaign or petition to demand all women receive ultrasound anomaly scans if they so choose, AIMS Ireland would be happy to promote it on our social media channels. We would also recommend that perhaps you contact the organisation Termination For Medical Reasons (TFMR) who may also be interested in supporting such a campaign. Their website is here: http://www.terminationformedicalreasons.com/

    You may also be interested in this series of articles on ultrasound during pregnancy that we published on our blog 42 weeks earlier this year. It details how ultrasounds work, the risks and benefits, the various options and the research behind ultrasound scans in pregnancy.

    http://42weeks.ie/2013/11/15/ultrasound-scans-part-1-how-can-a-scan-help-you-and-your-baby/

    http://42weeks.ie/2013/11/20/ultrasound-scans-part-2-types-of-scans/

    http://42weeks.ie/2013/11/29/ultrasound-scans-part-3-key-questions-to-consider/

    Do send us on any information that we can publicise for you.


  • #56
    madeinamerica
    Registered Users Posts: 787 ✭✭✭madeinamerica


    interesting article on the lack of data and accountability in irish health care system, obstetrics gets a mention. Would be relevant for these kind of scans or lack of them, as they are all data for the system

    http://www.irishtimes.com/news/health/health-service-failing-patients-says-departing-hiqa-chief-1.1808738


  • #57
    January
    Closed Accounts Posts: 23,865 ✭✭✭✭January


    I'm going to mail one of the girls who started the TFMR campaign. She posts on magicmum a good bit and we've PM'd a few times.


  • #58
    AshAdele
    Registered Users Posts: 108 ✭✭AshAdele


    http://aimsireland.ie/international-day-of-action-for-womens-health-closing-the-gaps-in-maternity-care-in-ireland/

    AIMS Ireland have produced 28 demands for our health service and government! (including a right to an anomaly scan fro every pregnant women!)

    How can YOU participate?
    Send this list of demands – add ones of your own, to your elected representatives, to policy makers, to the HSE, to your local maternity unit. Share your stories. AIMS Ireland will be posting articles, quotes, and questions to women on our Facebook page – asking for you to add YOUR voice to this global campaign by raising awareness to Human Rights issues in Irish Childbirth - pressing the Government to REALISE THESE RIGHTS.

    AIMS have a wonderful facebook ands website which are worth having a look at!
    https://www.facebook.com/aims.ireland
    http://aimsireland.ie/


  • #59
    5unlover
    Registered Users Posts: 7 ✭5unlover


    Hey Hun tks,I just stopped checking back in cause,I couldnt see any new posts from the ladies,we all were due in February,just like 2 know how they are feeling.did anyone have the anomaly scan.i am waiting on a anomaly scan.just wondering what's it's like.is true some people seem to think,it can cause miscarriage


  • #60
    Dolbert
    Closed Accounts Posts: 6,154 ✭✭✭Dolbert


    5unlover wrote: »
    Hey Hun tks,I just stopped checking back in cause,I couldnt see any new posts from the ladies,we all were due in February,just like 2 know how they are feeling.did anyone have the anomaly scan.i am waiting on a anomaly scan.just wondering what's it's like.is true some people seem to think,it can cause miscarriage

    An ultrasound can't cause a miscarriage.


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  • #61
    Neyite
    Administrators, Politics Moderators, Society & Culture Moderators Posts: 25,947 Admin ✭✭✭✭✭Neyite


    5unlover wrote: »
    Hey Hun tks,I just stopped checking back in cause,I couldnt see any new posts from the ladies,we all were due in February,just like 2 know how they are feeling.did anyone have the anomaly scan.i am waiting on a anomaly scan.just wondering what's it's like.is true some people seem to think,it can cause miscarriage

    If that was the case, then the stats for miscarriage would be far higher than they are, and second and third trimester losses would be greater, considering most scans are done after the first trimester when the majority of pregnancy losses occur. So no, they cant cause miscarriage.


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