Aibu to be getting fed up with NHS

[naty1]

Im pg and when making booking appt with mw i said can i make it sooner than 9wks (it was less than 6wks at the time) as i could see 12 weeks would fall over Xmas. Mw says dont worry theyre still open most of the time and they had no earlier booking appts.
So had booking this week and got NT scan date letter today.
For 14+1 :( :(
As its ivf im pretty certain of date but that doesnt mean their estimate of 14+1 always works for everyone as the baby could easily be a day at least bigger making it a big waste of time.
I see they are going to be busy over xmas but dont think its acceptable. Its over a month away so they must be able to plan their appointments and its not like im delayed from 12 weeks by 3 days to 12+3 but over2 weeks later.
Though i guess thinking about it they are probably short staffed from now till new year

As its the weekend i cant call or do anything but be upset, as i can see them having any appts to change to. They are likely to be even later. I wish we could be involved in choosing appt rather than - you are given it

I just feel the 'service' im getting from nhs has been quite poor.
(DC1 my nt scan magically became only a pointless dating (due to ivf) due to paperwork error though to their credit they squeezed a nt scan in later that week)

She is being very aggressive and petulant though.

Are you near London at all? I got my triple tests and scans done on twins following IVF at the Fetal Medicine Centre in Harley Street which is a non-profit and I think the whole lot was about £200.

Thanks toomuch :)
Hopefully the treatment there continues to be so good. I had relatives there and though living is expensive there they too seemed happy with the healthcare (in fact they were concerned about giving birth with nhs due to horror stories so must have found it better there generally, think this was several yrs ago now so stories about sub par care are not exactly new)

I'll check that as well about 15 w bloods being ok, i guess these things change all the time. Thanks

I have already acknowledged specialist - especially consultant care seems good. But then as certainly the ivf ones seem to work private and nhs they need to make patients happy. Even when nhs as they will likely become private patients.

nhs does some things right . Or should i say healthcare
. I would argue i made the biggest difference to succeeding at ivf. I had 1/2 failed cycles.
Changing meds against advice of cons. Keeping on top of thyroid blood results and increasing my dose, growing follicles larger, they said it made no difference (it did for me but not everyone is the same)
They completely messed up failed cycle and i had 4 mature eggs but none were truly mature resulting in poor quality.
They follow the standard advice not what seems to be latest. Or tailer it individually.
I would describe the result as very much luck not judgement on the clinics behalf. If it had failed they certainly would have had no idea what to do next
.
Ivf has very strict regulation and published success rates. So i expected and received better care there than say gps and hospitals.

Its probably the amount of opinion involved in medicine. Which becomes clearer when you have kids - there really is almost no right way.

Btw im not complaining about paying for ivf why would i.

Hazey the comment is quite accurate though sadly.

I don't know how much experience you have of Downs Syndrome or other genetic conditions, op, but the experience I have is not the one described there. My own ds has a genetic condition (despite his very low risk NT scan - genetic testing pre birth does not uncover all genetic conditions) which is very similar to Downs Syndrome, he is funny, clever, gorgeous, popular at school, and very, very loved.

..it has to include abnormalities as that is somewhat the most valid reason even going right up to birth.How traumatic would that be if only found in the last few weeks, which is why they offer it so early.

Often if genetic abnormalities are found, it is not a black and white situation, unfortunately decisions have to be left until later in the pregnancy, due to the lack of clarity.

Op, you are understandably worried about your pregnancy, and you definitely should call and try to rearrange your scan. But your damning of the NHS is, IMO, a little overblown. I have had much experience with the NHS, some of which has been amazing and some awful, it is a vast and complex institution, it would be incredible if there weren't flaws. But the basic premise of the NHS - free at the point of service - does make it a valuable thing.

I have online friends in the USA, who have just lost their son, the medical bills they now face are overwhelming, leaving them in a position of having to try to fundraise to cover bills and pay for a funeral, at the time of their deepest grief.

I'm in Dublin so not the NHS but my public hospital booking appointment was at 16 weeks and my scan date is the 8th of January when I'll be 21+4 abd that's the earliest I could get.

It does seem DS is unfairly singled out. Must be because its cheaper to screen relatively accurately and reasonably common.
Other things are so rare its impossible to test for. Or have no physical abnormalities like autism (i assume). And that does make you wonder how people would feel if you talked of aborting for it, again such a wide range of ability.
Life is not without risk in fact the odds are , i dont know maybe higher for an issue during labour than my downs risk of 1/270 or so by age.
No guarantee nothing wrong at 20w scan

People just like the feeling of control. The thought of a birth defect makes it feel very out of control. And enough for me to think people having lots of kids are very brave.

Update: all resolved no problem changing it to mid 13 weeks. :) :)
Nice and easy.
Have to say was a little odd as they had several appts free.
Seems like the date on the form was maybe wrong, maybe the op date and not the period date. Though i still couldnt move to 12 weeks so an element of keeping appts free just in case maybe.
She took both EDD and period date so as either one would have been enough, guess that could be to make certain.

Feeling very much better.

I honestly thought you wouldnt be given that date if they werent booked up completely. I'll probably find this baby measures behind and it would have been fine :). Though as DP is over 6ft. And i tend towards GD (insulin resistant) i really dont know. dSis just had a 9lb baby early so i hope not :)

So what was all the petulant, dramatic NHS bashing about then?

We have a wonderful NHS but of course it can be frustrating at times. Even its biggest fans (me) have to admit that.

^
This. My DS has just been refused equipment for his SN that could change his life because they don't fund it any more in our area. We are in the process of disputing it but it's taking ages, months of his life passing without it. I'm so frustrated I could scream sometimes but I have to remember the bigger picture. Without the NHS and its acute services I'd be dead by now, so would my DM and so would DS.

So I take a deep breath and keep on plugging away.

Congratulations on your pregnancy OP and I'm pleased you have some resolution.

Im glad your appointment is sorted. Hope all goes well in your pregnancy.

I would like to make a point about your stats though. You stayed that 94% of babies picked up as having DS lead you the pregnancy being terminated. There are always cases not picked up for a multitude of reasons related to dating and the main of error in the test etc. However lots of people who wouldn't want to abort the pregnancy decline the test. I have had 3 pregnancies in 3 different areas the amount of people declining varies dramatically between areas. So the 94% are a self selecting group who have chosen the test (done because it matters to them and probably some just taking the standard offer).

Glad you got it sorted op.

May I ask if you regret 5 pages of NHS bashing when you hadn't even attempted to sort it out? Do you feel a tad foolish? Cos you should.

All the best for your pregnany.

Littleduck completely agree realised after i could have said that. As on its own it sounds high but i dont know how many test or are confirmed affected.
Although possibly if you dont read about it you might think it only affects older women so dont bother. Or dont read the leaflets so dont request it.
I was given leaflets (wrong hospital) at the time of making the decision.
Im not sure how clear it is that it also picks up other Ts or some other defects (heart). Especially if it seems worded as DS. Until this time i didnt realise about t18 and t21

Naty, really glad you've got it sorted. You're slightly misinformed about IVF on the NHS though. Many trusts offer absolutely no rounds of IVF at all.

Ivf does not put you at higher risk for downs,

And I paid £17k for my Ivf cycles in total and had no nhs cycles despite meeting all criteria.

But it was the best money I ever spent. However you do get used to a private standard of care and when you then move to nhs for your pregnancy it can be a bit of a shock

Glad you got it sorted OP, hope the rest of your pregnancy is healthy and stressfree.

So by ten past nine on the Monday morning after you got the original appointment it was all sorted...

Please calm down a bit for the rest of your pregnancy otherwise your midwife will be worrying about your blood pressure.

I'm glad you got it sorted. Our wonderful but over stretched NHS is not great at admin and I'm sure it was not a purposeful oversight.

Enjoy your pregnancy and please relax!

Glad it's sorted. There are usually appts kept free so that non routine appts can be slotted in when needed. You were given an appt that falls (just) in guidance but generally we NHS workers do listen and where possible listen to concerns and try to ensure that people's needs are met. We sometimes get slated for not communicating well but sometimes, as here, people get annoyed before/
without communicating with us. It is a 2 way street. Hope all goes well for you going forward.
P.S theraininthewoods has your specialist/GP done an individual funding request (IFR) to the CCG for the equipment? That's normally what would need to be done for equipment which isn't usually funded.

Iamrandom it certainly makes sense, i would do that leave some just in case. I mean if youre full and someones sick it would take ages to catch up.
Though i just said to them i cant make the 14 week so she looked earlier. Didnt get into why until after dates agreed.

Saw mw today ,other issue, who was surprised at date i was given, she thought 13+6. And she completely agreed with my issues with it re baby being too large and they quite likely wouldnt be able to do that part. Said i was right to change it.
If it seems any better i feel the same about most other organisations (anything not automated seems to go wrong half the time) and its equally frustrating calling up sorting things out.

Just an update, not starting thread up again.
Went in at 13+2 and baby measured 13+6. She reiterated they use the measured size of baby to date pregnancy (not ivf dates) for nt calculations.
Also on antenatal threads it seems a lot of people have been told after 13+6 is too late and are then not measured for nt. It does make me question why people are being offered scans so close to cut off.

The nurse suggested dates often move by -+1 day, this may be mainly ivf though.
The scan itself went well and nurses etc very helpful.
The main issue is probably that the test has so few days it can be done about 2.5 weeks and then babies grow different rates, people are unsure of dates.
Hopefully nhs will roll out harmony and the volume will make it cheaper.