Struggling to trust the nhs

[ToffeePennie]

I had a very traumatic birth with my first son, very fast but the after care was shocking and left me with debilitating pnd. I already had pre natal depression that no one picked up on, and ended up trying to escape my life when my baby was around 6 weeks old.
I’ve since had my second child (different hospital, refused all medical interventions until the birth, didn’t go to a single midwife clinic, just told them I was pregnant and showed up at hospital in labour) and it was better. Not massively listened to, but a bit more focus on my care/my needs.
At a few weeks old my second got a horrific bacterial infection and was hospitalised for a week, whilst the fought it. It was ok, being there with baby, but it did make me feel very isolated and alone, I didn’t like the horrid coughing my baby was doing and the machines just kept going off with alarms day and night. I was kept in the dark about baby’s treatment, what was wrong and what I could do to help prevent it at home.
I was also not told that there are knock on effects (repeated chest infections, upper respiratory infections and the like) and additional complications to the infection.
I have had to take baby back to various doctors over the last 9 months because of the propensity to develop ear infections, throat infections, chest infections, scarlet fever, scarletina and vile stomach bugs.
It has also meant baby’s jabs were out of sync with his body and we have had to give them much later than would be typical.
This morning I’ve done some digging and found out that all of the subsequent infections my baby has had since being hospitalised, could have been caused by a lack of proper care at the hospital. I did think at the time that it was too soon to discharge us, even if it did mean we’d be in hospital over Christmas.
It seems to me like they stopped the antibiotics at least 24hrs too soon, I know they gave baby another child’s expressed breastmilk and it looks like they didn’t get a clear oxygen reading before discharging us (going by the notes I have)
They also discharged us to community care but never once was I told what that involved/how to contact someone/what to do.
I now have to take baby for his last lot of jabs on Thursday and it’s all creeping up again. These jabs have been rearranged by the surgery 7 times now. Last week I ended up breaking down and told the nurse that at this point trying to get these jabs done is messing with my mental health. I informed her that I’ve actually got a medical degree in a specialist field, all I want is my baby to have his jabs and for it to be over but there was no way on this earth I was going to trust her to do it for me. Because yet again the nhs are screwing me and my family over by wanting to give the jabs that baby’s already had. (They had the red book - it’s written in there!)
How much I hate the nhs for screwing up my mind so badly, how many times they have failed my family so far, how little faith I have. I know I just need to grow up about it, but it’s really difficult to trust an organisation like the nhs when so many many things are going so badly wrong in such a short space of time.

A lot of this is confusing.

What do you mean by jabs "out of sync" with the child's body? I don't think any of my children's jabs have been exactly on schedule but there's no 'sync'.

I don't think the NHS can be blamed (any more than you can) for your PND.

When you say you've "done some digging this morning", can you be more specific? Google?

What does a clear oxygen reading matter? My son needed his SpO2 level taken frequently for a congenital condition but it was fairly frequently difficult to 'take' from a small and wriggling child. They would look for other indicators and press on if worried or if there were signs it was low.

What does the expressed breast milk matter? I assume it's tested to be safe. Was there a reason for it?

I think your problems are clouding your judgment. I think you need help but perhaps more for you than your child. This isn't sarcastic or uncaring. You sound like you're struggling. Talk to someone in real life.

So you've basically googled something and come up with four! Your quite happy to use the free nhs when you need to but your happy to slag off our nhs too. Why haven't you paid for private medial care if your that let down by the nhs? You contradict yourself. Stop using are great nhs if you can't appreciate it!

Our*

The NHS being free doesn’t mean it’s exempt from being responsible or providing great care.

The NHS is a fantastic idea but unfortunately is overstretched due to underfunding.

I understand why OP is upset.

You sound very confused and, possibly unwell.

Is there one GP at your surgery who you could see and request to see regularly in future to get some continuity? You could email the practice manager to arrange this if necessary.

Some babies are prone to respiratory infections. The nhs treat them. Getting the immunisations done is important but the timescale isn’t vital. I’m unclear about what went wrong last time but it needs sorting out and you have to engage with the service somehow to move forward.

Well (and I am not blaming or criticising) so much depends on how you interact with the care providers. Don't think of the NHS as a great unfeeling monolith. How things were in hospital is a quite separate thing from how things are in your GP practice.
The pressure means staff don't remember and liaise as, ideally, they should. So be calm, proactive, take notes, offer your own records to demonstrate what's happened before, take someone with you if possible to make consultations easier.

Can you explain which jabs your child has had that they want to give again... and why they want to give again? How old is your child?

If your child had a lot of complicated care, it is very hard to be very informed about it all.

Sorry, posted too soon. My own experiences of having ill babies was that I had to be vigilant and able to give a detailed history to doctors at all times.
I do feel for you because the fear is debilitating, almost, when your kids are so small. When it goes on a long time it wears on you and you are never at your best dealing with doctors as a result. Hang in there, think about getting some support for yourself.

Breast milk is not screened. I was pumping for him. He was given someone else’s unchecked/untested breastmilk.
I am not slagging off the nhs, and I agree it’s a useful resource, but in its capacity with my family it has failed rather dramatically.
We cannot afford to go private, it would be different were we able to afford it, I would have gone private many many years ago.
He needs his 3rd lot of baby jabs. He was about to be immunised with the 1st lot again.
He is currently 9 months.

As pp said "the NHS" is not one thing, it is lots of people, lots of different professions, doing lots of different things, in different places.

You sound like you are finding fault with things and adding them all together. I think you should break them into separate incidents and some of them you should move on from.

Stopping antibiotics for 24 hrs doesn't cause throat and stomach infections months later?

I used to be a breastmilk donor for unwell babies in hospital, what is wrong with that?

To try and add some balance it sounds like you have had a lot of use from the NHS and they also have also potentially saved your second child's life.

Breastmilk was screened when I was a donor. But I thought it was only given to premies; are you saying your child was given someone else's milk by accident, mislabeled, many weeks after birth?

So they want to restart the entire immunisation schedule? Has he only had one lot previously?

Breastmilk donors are screened and I am pretty sure the milk is tested and heat treated too.

thenorthernsinner the op is perfectly entitled to complain about the NHS if she had shocking post natal after care.

Why do you think Mumsnet is campaigning about this issue, if there are no problems in this area?

Yes, there are legions of skilled and amazing health care professionals working in the NHS but they are battling in an under-funded/under-resourced system. I can't stand this bullying dogmatic attitude that everyone should shut up and be grateful for amazing care when the care has been shit.

I have witnessed instances of both really fantastic and really appalling care by the NHS in my own family. Both types need to be recognised, highlighted, reviewed and talked about!

You are aware that your GPs practice and the hospital are separate organisations within the NHS?

So don't expect the GP to know exactly what the hospital did or didn't do because they don't have the records.

The nurse cancelling the immunisations is the fault of the GP practice and you need to complain to the practice rice manager if you have issues.

Also some babies are more prone to illnesses than others regardless of whether they were seen in hospital or not.

As a PP you need help for your own mental health issues and it would be helpful to make an appointment with a GP.

Donor milk is stored frozen, I think it's pasteurised, too, before given to babies. It was tiny amounts when I toured Addenbrookes.

I'm reading several things online about vaccination schedules that need to be restarted. If I were OP, I think I'd want to be sure that it could be finally fully completed, how can they be sure this time it will get all done.

The 3rd imms are virtually the same as the first ones, minus the rotavirus.

The practice nurse does check what the baby is due, they don’t just give what’s on your letter. Your invitation for imms comes from Child Health and won’t always match the red book of central imms hasn’t been updated properly (which sometimes happens if a baby is out of sync). The nurse will ensure what’s given is what’s due.

It was not doner milk. Me and another lady had our pumped milk carefully labelled with our babies names. When they came to feed my son (tube fed due to his illness) I didn’t see the bottle they used until the end of the feed. It had a female baby name on it, miles apart from my sons name (think Aurelia and John). I asked the nurse who did it why she was feeding my son the wrong milk but tbh I was sleep deprived and thought I was going crazy. Until later on when I found out he had indeed been given someone else’s breastmilk when there was loads of mine he could have had.

I can understand why you’re feeling stressed and upset, it sounds like you had some awful care.
However you need to break the issues down. The breast milk thing is pretty shit and they shouldn’t have made that mistake.
The oxygen levels... I assume they were happy with the reading?
Immunisations... the third set are identical to the first set, minus the rotavirus immunisation. What do you mean by they tried to give him the same ones again?

Do you think he has been harmed by having the wrong breastmilk? If not then I would try not to dwell on that too much.

If they are restarting his jabs they should have good reason and be able to explain to you so YANBU to demand an explanation of what is going on here.

It doesn't sound like you've had good care and I'm sorry for the stress it has caused you.

I think more than anything I’m just frustrated that I never seem to be listened to, they don’t seem to trust each other and every interaction I have with any department of the nhs seems to yield more frustration. However I have now contacted my gp clinic this morning to ask to speak to someone regarding the jabs and my own mental health as I don’t think I’m being very healthy.

You need someental health support. Get it done privately. You are right not to trust the NHS, the quality of care is very very poor by 22st century standards but if you can't afford private healthcare then it's better to have substandard care than no care. You seem like an intelligent woman with some severe mental health problems that are stopping you from thinking clearly. You can get reasonable healthcare from the NHS, you just need to threaten them repeatedly sadly. If you can't afford to go private you need to sort yourself out so that you can start dealing with the NHS properly.

*21st obviously.

That's unfortunate about the wrong milk but really you need to let it go.

Another thread says the Meningitis jabs simply don't take if you don't get them at the right times apart.

How’s your baby now op ? If he’s thriving and happy. That’s an excellent sign. Try not too get too tangled up in what has happened ( I know it’s hard especially it’s concerning your baby ). But this will only cause you more stress and if you have had mental health issues in the past. This could really put you over the edge. Lots of babies have delayed jabs. It’s not ideal but it all works out in the end.

ToffeePennie by the sounds of things you have had a really tough time. I'm so glad to read that you're getting your own mental health checked. I think having unchecked prenatal depression followed by PND may have left you in a bit of a hole and your lack of trust in the NHS is understandable.

They dropped the ball with you, and by giving your son someone else's milk. I hope you get answers regarding the jabs tomorrow but I think your mental health issues have left your anxiety through the roof and perhaps whoever you speak to about that can help you deconstruct the issues with your baby's care and help you decide what the next steps are in relation to that. Good luck