Anomaly Scan Campaign

lazygal

Not really sure how we'd go about this but I've noticed a few post on people having to fight to get an anomaly scan at 20 weeks or haven't gotten one at all for reasons like uncomplicated pregnancy or age.

I think it is appalling that politicians and others are constantly saying glib soundbites about the safety of our maternity services when a basic scan isn't standard practice in every maternity unit in the country. I am not pregnant myself but I have two children and found the anomaly scans enormously reassuring psychologically and others have found the same. I didn't really settle into feeling things were all okay until we had that scan. I can't imagine the stress of not getting that reassurance. I can't imagine not getting that scan and then having to deal with a complication during or after birth that you could have dealt with earlier or come to terms with during the pregnancy.

Would anyone be interested in getting the ball rolling on this? I haven't a clue how we'd go about it but maybe others would have some ideas. Pregnant women in Ireland deserve better than having to fight for a routine scan.

January

I'm in, like yourself I haven't got a clue of how to go about it but I'm definitely in.

I've stickied the thread so it gets a bit more notice too.

shortstuff!

I'm in aswell, I paid €150 for a private scan as Mullingar dont do them, I could afford it but Im sure others cant. Most of my friend dont even know about the scan let alone the importance as its never mentioned in the hospital. A friend also attended Mullingar with a high risk twin pregnancy and she was sent to Dublin to pay for one, disgrace.

Merkin

Perhaps Minister/Department for Health might be a good starting point?

cyning

Despit attending the high risk clinic on both pregnancies and having scans at every appointment I couldn't get one either. It's a disgrace and I'd definitely do something to help if I can.

I wonder would AIMS have any information? I guess basic stuff too: emailing/writing letters to all TDs, lobbying local TDs in person too at their clinics maybe? And if they're out canvassing with any local election candidates too it's a good time to grab them.

Jerrica

Absolutely wonderful idea, count me in too. AIMS is certainly the first port of call, (http://aimsireland.ie/), then possibly also Neighbourhood Midwives, Ciudiu and the Doula Association of Ireland (although the latter two would be from a support point of view.

Are there existing HSE guidelines on this? How does Irish practice compare with UK and other European models? Are there any studies to support the practice of commonplace anomaly scans? I'm just thinking off the top of my head, but starting with AIMS will probably be best, they'll also have access to hospital policy information which will be different depending on which hospital you're looking at.

lazygal

When I've a bit more time I will get in touch with some of the organizations mentioned. I'm really glad to see I'm not the only one who thinks routine anomaly scans should be offered to all pregnant women in Ireland.

newtoboards

I'm in; had one during my pregnancy as part of package with private consultant and problems were found which resulted in my care being handed off from Mullingar to Holles street for a part of the pregnancy. Thankfully I was allowed to carry to term and handed back to Mullingar to give birth but my son has been under the care of pediatricians since he was born and is healthy as a result.

Cameoette

I'm 100% in too. Great idea.

Neyite

Count me in.

I'm very annoyed about the gradual removal of scans and suspect that its not primarily a money-saving endeavour but more about the fact the government dont want us to find out of there is something wrong with our pregnancies now. Because we might begin to demand services that we shouldnt have to get on a flight to the UK to recieve.

Its nigh on impossible to get an early pregnancy scan, or indeed a timely EPU appointment if you experience a bleed. I've had 3 miscarraiges and each time the appointment was for about 8 days or more after I rang them, they even admitted that it was a deliberate delay.

Cameoette

Neyite: I have the same suspicions too, I really don't think it's just about cutbacks.

lazygal

All the concern for the unborn, but you get sweet damn all help for miscarriage.

lazygal

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.

Chattastrophe!

I'm really surprised at that happening in Holles St ... there was never any question about me getting one, and the leaflet I was given very clearly explained everything about it and said that every patient was offered it around the 20 week mark.

Also I was given several detailed scans prior to that due to bleeding, no delays etc. Actually I'd say Holles St are probably the standard that should be aspired to in terms of antenatal care ... that was my own experience on the public system, of course I'm sure it depends on your consultant.

newtoboards

Chattastrophe! wrote: »

I'm really surprised at that happening in Holles St ... there was never any question about me getting one, and the leaflet I was given very clearly explained everything about it and said that every patient was offered it around the 20 week mark.

Also I was given several detailed scans prior to that due to bleeding, no delays etc. Actually I'd say Holles St are probably the standard that should be aspired to in terms of antenatal care ... that was my own experience on the public system, of course I'm sure it depends on your consultant.

I'm surprised about Holles Street too as I was referred there from another hospital due to serious concerns raised during anomaly scan in Mullingar and it was within the window to have a medical termination abroad if I wanted/needed to based on the outcome of the scan.

Merkin

I must ask her about it, she told me about it a couple of months ago. Unless she was talking about her last pregnancy which would be nearly four years ago and I misunderstood (quite possible given my Baby Brain is at all time vague levels!) When did it become compulsory in HS?

lazygal

It's not compulsory, rather it's routinely offered. Anyone I know who's had a baby there in the past couple of years got one and a few other scans at appointments too. I was private but had to attend the public clinics once or twice and was scanned every time.

Moonbeam

Merkin wrote: »

I didn't know that, my friend definitely had to push for having it there and this would only have been a few months ago, I couldn't believe it.

Holles street offer anomaly scans and actively encourage them and to book them early .
I have had 4 there in the last 5 years both private and under midwife care .

Millem

Merkin wrote: »

I didn't know that, my friend definitely had to push for having it there and this would only have been a few months ago, I couldn't believe it.

Seriously I think there must of been a mix maybe? I only had my baby in January and was public, when I rang to book in at around 6 weeks they got me to book anomaly scan straight away. I was low risk too. I have to say they never scrimped on scans there.

Ms2011

I found the Coombe v.good, they couldn't see the baby's face at the first anomaly scan as his hands were covering it so they brought me in a few weeks later to do a second one as a precaution.

How Strange

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.

The coombe offer it as standard.

Despite what you hear about our maternity services, they aren't first world or fantastic. They're just about adequate.

Count me in for any petition

lazygal

I have been thinking about what strategy is best.

Would it be appropriate to email AIMS a link to the thread, and also email the other organizations mentioned?
Contacting the Minister for Health probably won't be effective. The Department receives thousands of contacts every day and it would likely be lost in the crowd. I think what might work is contacting individual politicians about this and pressing them to raise the matter in the Dail and Seanad (such as during Topical Issues debates). While nothing is likely to come of such debates directly, they can be a springboard for raising wider awareness of the campaign.

lazygal

How Strange wrote: »

Despite what you hear about our maternity services, they aren't first world or fantastic. They're just about adequate.

I challenge any politician or commentator who trots this line out to undergo a trial of pregnancy and labour in any maternity unit in the public system and still remain convinced of the wonderfulness of our maternity services. I was lucky enough to be able to afford to go private, which allowed me some extra bonuses in terms of privacy and comfort prenatally and postnatally. But the time I spend in public antenatal care for a couple of appointments and the night I spent on a public ward showed up huge gaps in maternity care. I never felt unsafe, just not really well taken care of.

Jerrica

I think contacting AIMS first to find out is this an issue they're aware of would be first, then try tobeatablish what national policy is as all hospitals will vary. That's a good start.

I'm out of the country at the moment but when I'm back I'll gladly help with any correspondence

Jerrica

lazygal wrote: »

I challenge any politician or commentator who trots this line out to undergo a trial of pregnancy and labour in any maternity unit in the public system and still remain convinced of the wonderfulness of our maternity services. I was lucky enough to be able to afford to go private, which allowed me some extra bonuses in terms of privacy and comfort prenatally and postnatally. But the time I spend in public antenatal care for a couple of appointments and the night I spent on a public ward showed up huge gaps in maternity care. I never felt unsafe, just not really well taken care of.

I think it's fair to say that Ireland is one of the safest places to have a baby, but at what cost to the Mothers well being? Lots of stuff on the AIMS fb page right now about the poor nursing and midwifery ratios in Irish hospitals.

lazygal

I found this: http://www.hse.ie/eng/health/az/P/Pregnancy-care/

which is copied from the NHS guidelines and adapted for the HSE. It refers to a dating scan but not to other scans. It also says you will be offered a dating scan. I know of a few women who's 20 week scan or even a 34 week growth scan was all they got during pregnancy.

detoxkid

You get one as standard as a public patient in galway around 20 weeks. But you get no scans before or after that unless they are worried about you. I think the inconsistency around the country is shocking.

lazygal

Jerrica wrote: »

I think it's fair to say that Ireland is one of the safest places to have a baby, but at what cost to the Mothers well being? Lots of stuff on the AIMS fb page right now about the poor nursing and midwifery ratios in Irish hospitals.

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.

Neyite

detoxkid wrote: »

You get one as standard as a public patient in galway around 20 weeks. But you get no scans before or after that unless they are worried about you. I think the inconsistency around the country is shocking.

Heh. And even then you dont necessarily get a scan earlier. I was classified as high risk considering I had a missed miscarriage on a twin, and was referred by my gynaecologist GP on the recommendation of the fertility clinic we attended, due to an exisiting endocrine issue that can have an impact on a pregnancy. And I was still treated as if I'd an awful cheek to try and skip the queue when I rang to try for an earlier appointment. I was told by the charmer on the phone that I would be scheduled in for a scan+checkup at 21 weeks, and that in her opinion I was luckier than other women as the average wait time for first appointment was 23 weeks or so.

She was right though. I was bloody lucky to be offered a scan at all it seems. When I attended the EPU in Jan 2013 for miscarriage, they scheduled me 8 days after they got the letter from the GP, got me to pee on a stick, told me I wasnt pregnant anymore and patted my hand. Said that the policy was no scan if test is negative. That there was unlikely to be any tissue left but to keep an eye on it.

My next miscarriage (sept 13) I didnt bother to go to the EPU, my GP agreed it was likely a waste of time for the little they do.

I'm due to go back to the same dept of the hospital to check out why I miscarried at the end of this month. It will be interesting to see if the care differs from a gynae as opposed to an ante-natal perspective. I'll keep you posted.

Neyite

lazygal wrote: »

Women not dying in childbirth is a very dismal way to asses the relative 'safety' of maternity services.

Some first-class yardstick eh?

diveout

Neyite wrote: »

Count me in.

I'm very annoyed about the gradual removal of scans and suspect that its not primarily a money-saving endeavour but more about the fact the government dont want us to find out of there is something wrong with our pregnancies now. Because we might begin to demand services that we shouldnt have to get on a flight to the UK to recieve.

Its nigh on impossible to get an early pregnancy scan, or indeed a timely EPU appointment if you experience a bleed. I've had 3 miscarraiges and each time the appointment was for about 8 days or more after I rang them, they even admitted that it was a deliberate delay.

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.

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.

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.

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?

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.

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!

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.

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.

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.

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.

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

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.

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.

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.

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.

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!

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...

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.

AshAdele

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

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.

lazygal

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