NHS care - what should I be getting?

[SG74]

Hi - wondering if anyone can assist in giving me a steer in terms of what level of care I should be getting from the NHS. I'm over 40 and on first pregnancy (naturally conceived). I'm aware I should be getting 'consultant led care' as an over 40 but I'm not sure what this would normally entail. I have met a doctor once. Aside from that I've seen a kid wife once at booking in and once at 20 weeks. My next mid-wife apt is at 28 weeks. I am currently 26 weeks. I'm not a straight forward case as I have a couple of underlying health issues that don't seem to be getting much attention. 1. I have a single horseshoe kidney that was a pelvic kidney, the uterus growing has moved this to my back. Excruciating painful (try moving an organ without anaesthesia over a period of about 6 weeks!) and I have fairly severe asthma which has been worse throughout my pregnancy. I have asked for an apt to discuss c section given kidney and bladder issues and previous advice from a consultant urologist that I would likely need/should have a c section if I ever got pregnant. So far the NHS trust I am dealing with won't even make me an appointment to discuss this. I suffer from the British 'better not make a fuss' disease and want to b are I know what I'm entitled to before I get demanding. I'm also struggling to get them to book me in for. 32 week scan, again something I think I am entitled to given my age. So should I be able to see a doctor again rather than just a mid-wife? How can I force them to discuss my birth options and not bully me down the Vaginal birth route? Can I force them to make me a 32 week scan apt as would be normal for someone my age. I live in London and am attending Chelsea and Westminster and while I appreciate NHS resources are stretched I don't feel I'm getting the care I need or am entitled to. I'm certainly getting less care than pregnant friends of the same age are getting in Scotland for example.

I had similar questions after having so many losses. What did they say at your booking in appointment about your health conditions and birthing options? Could you ring for an additional midwife appointment to say you are really worried and would like to talk to someone about your concerns? The other thing you could do is ring NHS England and ask for the number of your local health commissioning body and speak to them to say you are concerned. I hope you have some success but do speak up if you are worried. (Says me who is the worst for that! )

Don’t feel like you are making a fuss, while I’m not sure what you are entitled to if you feel your care is inadequate you should complain. As someone who works for the NHS I’ve found that management don’t care much for staff complaints, but when it comes from a patient things are more likely to change. Very frustrating system. A good midwife would support you to make a formal complaint (and probably welcome you doing so!)

I just thought I'd let you know the care I got. We are different scenarios as I do not have long term health conditions, and I was not over 40.

But during my pregnancy I had kidney problems, so I thought I'd tell you how I was treated?

I didn't have many appointments early on. 12/20 week scans. I didn't actually get a majority of my problems till 28/30 weeks.

Later you get much more frequent MW appointments, every couple of weeks going to every week near due date.

I had 2 scans on my kidneys (not baby), I was offered an overnight stay to be monitored, and seen by my doctor four times.
The problem with my kidney wasn't actually bad, but they wanted to test everything to make sure baby was safe.

Basically, your care seems poor! Go and speak to your GP as well as MW. Do you have you notes? All your appointments should be in there, it should show you at what point you discuss your birthing plan with MW so you can say about C section then

I have had two babies at C&W including one pregnancy that was far more complicated than this ending in a premature birth with a VERY small baby. C&W are fabulous including their NICU which is world class.

C&W are not anti c section at all (they have one of the highest rates around) but there is no need to discuss mode of delivery now. They discuss it much closer to the time of delivery. Unless you are in imminent danger of premature birth this can all be discussed closer to your due date.

At 36 weeks you might have an extra scan (if your baby is fine there is no need for an extra scan). You will have an appointment with a midwife to discuss birth and you can bring these issues up then.

I don’t know why you think a 32 week scan is needed. Is the baby growing well? Has there been any talk of placental insufficiency? 32 week scans are not offered routinely for women over 40 are they?

I would have been entitled to one having had a very small baby the first time around but I didn’t make it to 32 weeks. I don’t want to be dismissive but just being over 40 itself is not a risk factor. (You’ll find on the postnatal ward at C&W has more over 40s than under 40s...when I had my first at 31 I felt like a teenager). With your other concerns I assume they are on your maternal notes. You can ask the midwife if they will be taken into consideration wrt delivery. You can also ask your GP for pain relief.

I have had two C sections at c&W and the second time when i went in for my booking in appointment I was given full vbac lecture and then she said: although given your history, we’ll take it as it comes eih?
With my first at 36 weeks it was decided a C section would be needed. It was done at 38+2 when I went into labour.

And on the day they decided (and by they I mean the consultant) I would need a C section a theatre slot was found for me at 39 weeks an hour later.

Your Maternity notes will have a clear schedule of appointments to follow (they are different for first and second time mothers). One of those is an appointment with a midwife to discuss birthing options. Presumably if there are concerns these would be raised then.

The kidney pain and asthma should really be handled by the GP not the consultant obstetrician for now. They will get involved later.

Thank you all for input.

Hi there is a group which advocates for patients who wish to complain about the care they are receiving. I used it when I was pregnant. I had a fairly straightforward pregnancy but there were a lot of issues with lost notes, not making appointments etc. Things really got moving after that and I was glad id escalated to them. Can't remember what they were called and am on the train but a quick Google should help. This was in London also.

I'm 40, pregnant with my second and with some mental health issues (Ptsd and a couple of postnatal mental health issues after ds).

I'm 27 weeks, I've seen a consultant once who agreed to an elective (ds was an emcs) and went over what sort of thing I would need to make this a better experience than ds's arrival was. I will see them again at week 32 to book the elective. They wanted to know I was getting support from the mental health team and that was pretty much it.

All women over 40 here (in this part of Scotland) are offered extra scans so I'm getting one at 28 weeks and one at 32 weeks. The consultant agreed that being over 40 wasn't in itself a massive issue but they are a fetal medicine specialist so have an interest and would ideally like to offer to everyone.

Thanks @koshamangsho (sp sorry if I got it wrong!) thanks for your input. Glad you had a good experience. Regarding the 32 week scan it was actually the NHS sonographer who did my 20 week scan that asked why I didn't have a 32 week one booked in 'given my age'. Sadly my experience hasn't been so good I self-referred at 5 weeks but didn't get a booking in apt until 14 weeks by which time I'd given up and paid for private scans. Since then I've turned up for apts that have been cancelled or rescheduled without them telling me twice. My local GP surgery has a 4 week wait for apts and tells me to take everything pregnancy related to to the hospital including my asthma and kidney issues.

Your midwife can refer you for extra scans if they're deemed necessary. Later on your midwife appointments should be every 2-3 weeks. In terms of other issues, you should have seen a consultant to discuss your general health and decide if any issues require action? For me this happened after my first scan, the consultant decided to refer me for extra tests due to my medical history. Some issues were also ruled out at this point as requiring no further action. In terms of c-section, hospitals like to avoid this unless there's evidence it's necessary. Is there any proof in your medical record that you were told it would be necessary? If not then I'd ask for your history to be reviewed by a urologist with a view to recommending whether a section is required.

Ah that’s a problem. Because C&W rely on the GP to do all the in between checks. If you can’t get seen that’s a problem. They shouldn’t be sending you off to the hospital. And I reckon that the GP didn’t forward your referral quickly enough. I have had 4 pregnancies (2 babies and 2 late births and stillbirth) handled by C&W and the referrals have always come through on time. There is an email address- lola@midwife or something at C&W and I have emailed that address once and has an answer.

I am surprised at the cancellations etc- never ever had one and they are usually good about sending you a text with a reminder if they cancel. Email the midwife at the email address and see what she says?

The only people I have no faith with at C&W are the sonographers. They missed a low lying placenta once leading to major complications and the second time when the scan showed up serious problems (with me not the baby) she was in a total flap and had no idea of the protocols.

Standard schedule of care for first baby should be midwife appointments (or consultant, don’t need to double up) at:
Booking, 16, 25, 28, 31, 34, 36, 38, 40 and 41 weeks pregnant. (pathways.nice.org.uk/pathways/antenatal-care-for-uncomplicated-pregnancies/antenatal-care-for-uncomplicated-pregnancies-schedule-of-appointments)
You should have seen a consultant by 20 weeks and I would expect them to see you again at least once more. With your issues potentially much more frequently. Severe asthmatics should really be seen by the cardiac specialist obstetric clinic. Your kidney function should be monitored really closely too.
Can you book yourself a midwife appointment ASAP to discuss your concerns and get them to book you a consultant clinic appointment?

Thank you that is hugely helpful.