To ask to be referred to another hospital?

[JonSnowsWhore]

I've had enough of the hospital I'm meant to be giving birth in! Not just with maternity, other departments aswell.

They've ignored me for weeks (not returning calls etc) when i was waiting for a prescription to be sent to my doctors for my neurology medication,

I was left fasting for 22 hours while pregnant for a procedure (nurses wouldn't even let me have water as they had no idea what was going on) that I was then told by the person carrying it out, that fasting wasn't even necessary, let alone no water. I've had notes lost, wards not knowing I was booked in, so I was left to get changed into a hospital gown in the waiting room toilets & then had to sit like that in the waiting room waiting to be taken for it. No ward wanted to take me after the procedure so I was left in theatre for another 2 hours while they tried to find somewhere. Just a whole series of small fuck ups that all added up.

I'm a high risk patient & hadn't been referred for my glucose test as I was told I would, so I had to phone up a load of numbers where no one ever answered, and eventually went to see my local midwives to book me for it.

Today again, something so stupid but it was like the straw that broke the camels back. Appointment with the anaesthetist for my epidural (when the time comes) was at 2.10, I arrive on time. I'm left there for half an hour without being seen, a nurse walks past & asks me to get my son to stop touching the blinds (I had been telling him, he's a very difficult child, but that's another thread)
So I sort of snapped, and said well how about I get called in for my appointment, I've been sitting here for half an hour past my appointment time & by now he's bored!

I ended up telling them I wouldn't be coming back and that the hospital was a joke & walked out

So how easy is it to get referred to another hospital? I just can't bear the thought of them messing me around any more, what are they going to do when I'm in labour, put me in the waiting room because they've lost my notes & don't know I'm meant to be there??

I do understand that you've been messed about, but late appointments honestly can't be helped.
If you're really unhappy with the care email PALS and have a chat to your GP to see if there's somewhere else you can go.
Hope you feel better soon.

If you're unhappy, you can speak to your community midwife about booking into another hospital, but it might cause more delay in getting you to have your anaesthetic review and for the obstetric team to see you and put a plan in place as they'd want to see you as a high-risk patient and see what has been done for you so far.

Waiting times in hospitals are frustrating, but the anaesthetist may have been delayed due to a difficult obstetric case/emergency, or could have been covering ITU that morning etc.

I would book in somewhere else.

Some of the stuff you describe is par for the course and you need to learn to live with it (appointments running over etc can't be helped).

But lost notes, missed referrals, incorrect procedures followed are all not good. I deliberately avoided having my ante natal care at a hospital I'd previously attended for fertility investigations and treatments as they were very similar-extremely poor admin and rude staff who made a stressful time even worse. I wouldn't have been confident that I'd be well looked after there. FWIW, it was absolutely the right decision for me and I am very happy with the care I've had at my other local hospital.

Hi op, you should be able to change yes, they may not like it but it should be fine. People turn up at any hosptial to give birth without notes, and often no english and they all coped, not ideal but you should be fine. You dont want to go into labour scared.

I do get it about the waiting times, I live in greater London so the doctors & hospitals around here see so many people, usually I do just get on with it. But today I had to be back to pick my daughter up from school so I would have had to leave either way to be honest, it was the fact that the nurse moaned at me when she could clearly see I was trying to get my son away from the blinds & distract him, it just made me think really? This is not my fault I'm still here in this waiting room!

He was good as good for the first 20-25 mins but naturally they start to get bored.

I've given them the benefit of the doubt loads of times but feel I've had enough now. The hospital I'd need to be referred to isn't in our borough so I don't know if my community midwives can do that, it may have to come from my dr, but even she brushed the whole neurology thing under the carpet so not totally confident she'll take me seriously this time either

How pregnant are you?

I'm 26 weeks crunchy

Am I remembering rightly you have hydrocephalus/raised ICP ? Maybe it wasn't you , just your name and the neurology part rings a bell. I would ask to see consultant neurologist and explain your concerns - the experience you had when you were wrongly fasted for 22 hours is pretty awful. I work on a ward handling neuro day case/GP referrals and I think we'd be in a lot of trouble if we let that happen - they should have clear guidance regarding fasting for procedures that each ward's familiar with.

If it is IIHC and it's frequent LPs you're needing have they suggested having a shunt fitted instead? That might cut down on the number of hospital admissions and appointments and make life a bit easier for you ? Apologies if they've already suggested that/there's a reason they can't.

Sorry, I'm getting the hydrocephalus part mixed up with hypertension, I knew what I wanted to say/what I meant!

It was quite easy for me to get moved to another hospital, which I needed as I moved house while pregnant.
Re late appointments, it doesn't seem unusual I'm afraid. Maybe ask at the reception how long you are likely to wait. I always do now, as it is easier to get organized with DC when you know roughly how long it is going to be.
One time I asked and was offered a buzzer (pager?) so I could go away instead of waiting in the waiting room!

Yes I'm the one with the intracranial hypertension lol, have spoken to another lady on here though that has the first one you mentioned I think, as I remember it being a bit similar but different to my illness.

At the moment I don't want to go for a shunt, as it seems to be the pregnancy that's aggravated the condition, so I've said rather than go for something so drastic, is like to see if it settled down again once the pregnancy is over, & if it doesn't then will talk properly about a shunt.

Oh you've also reminded me, my maternity consultant was meant to refer me to see a maternity neurologist aswell, but that hasn't happened either 🙃 losing the will to live lol.

The best bit was after fasting for over 22 hours, them finally finding a ward that would take me (the quickly converted a small waiting room) & saying that getting me something to eat & drink was their first priority, the nurse wandered off saying she was getting me a sandwich & cup of tea, did she come back? Did she buggery 😂 was drinking water from the toilet taps & a packet of crisps that my OH had bought me

Something I always go to appointments expecting to wait way past my appointment time, very annoying but I've just accepted it as part of hospital life! I've even sat there in that hospital before for ages while they called people in who arrived way after me, only for me to question it for a second time & find out they hadn't given my consultant my notes so he had no idea I'd even turned up for my appointment

OH had a problem with his car today so it was stuck in the garage otherwise he would have been around to pick my daughter up from school. I stupidly though that even if I was seen late, I probably still wouldn't be waiting up to half an hour after so would have time for waiting & quickly having the appointment

Well when the blinds are broken and waiting rooms are shabby you will be one of the first to complain, and who will pay for it. Bring books, a toy or something for your child and don't let him mess with the blinds

😂 was waiting for that.

He had stuff to keep him occupied that worked for the first 20-25 minutes, as I already said. If you must know then there's a chance I might have to have ADHD looked into with him, but that's a different thread, I'm not trying to make it all about that.

Broken blinds would be the least of my worries in that hospital, after finding fag butts under my bed in a&e when I dropped something down there, & people's notes with confidential written all over them just left open on the front desk for anyone to see. As I said, a long list of things that might seem trivial on their own but have all added up!

Hi OP as a fellow IIH sufferer I would strongly suggest getting a referral to UCL as they have a strong IIH team there. You need a competent neurologist to guide your maternity care.

Hi rawhh I was hoping to come across another one on here I'm under the national in queens square for neurology, as well as my local hospital as the neurologist happens to work in both hospitals, so he himself is very good, all the messing up has come from the local hospitals secretary (ignoring me about the prescription) and the wards messing up with the fasting, losing my notes, & whatever else, I'm losing track! I'd hope to still stay under the national, I don't know how that will work out, I've managed to get a Drs appointment equivalent to gold dust for this week so I'll talk it through with them & go from there

As you are under UCL for your Neurologycould you ask to be under them for your pregnancy as well?

Hmm it's almost an hour away from us, that would make me very uneasy labour wise, & I definitely couldn't manage to make it to appointments there & back before picking the kids up from school, one finishes midday & one at 3.15 the other hospital is meant to be quite good for maternity but obviously I'd have to see how that would work matching up with the neurology. Not that it should be any worse seeing as where I am now doesn't seem to have a bloody clue either

Unfortunately- when you have a rare disease you have to make the decision to travel for the best care. The truth is that a lot of care professionals havent heard of IIH. It doesn't excuse the poor care you have received. However, you need to do what you feel most comfortable with.