Neonatal Summary

[Lottie86]

Was everyone here given a copy of their child's neonatal discharge summary?

When Iona got transferred we weren't given a copy of it and when the nurse just left her notes in here today I saw her official printed summary and started taking a photo of each page of it (so I can print it to see what went on as I had only seen a shortened scribbled copy before when a nurse left her file in here before by accident) but she spotted me when I was on page 3 and whisked the notes away as I'm apparently not allowed to see it and she apologised for leaving the notes in here

Findlay's neonatal gave us a copy of the summary so I was just wondering if it's just our hospital who think parents shouldn't know anything or if others are the same?

Apparently to see her neonatal summary I need to write and request (and pay for) her neonatal notes

Slightly shocked by how long her summary is as if that's the short version I dread to think what her full neonatal notes look like.

 

[Marleysgirl]

We were told we couldn't read Andrew's notes without arrangement, but we were sent a copy of his discharge summary about a week after he was discharged. Our Paediatrician said that we were entitled to see what she had sent to his various follow-up teams, and that it also might prove useful if he were admitted in an emergency (so we carried it in the baby bag for about 6 months).

 

[Lottie86]

Thanks. I thought it was very bizarre that we hadn't been given a copy of the discharge summary as F's neonatal gave us his the day he came home but the nurses here thought that was strange and told us the neonatal up here don't give the parents a copy

 

[AP]

We were given them on discharge - it was 3 pages long and explained mother & fathers details, delivery type, what happened after birth and what was required during her stay. Defiantly did not need to pay and I'm enraged for you that you can't see your own daughters notes!

 

[Hotmum]

Actually Yasmin had a folder with the summary and every single detail of my complicaded pregnancy, parents history, personal notes, every med and progress and regress!
I was in the NICU and SCNU at least 4-5 hours a day somedays when my oldest was in daycare i was there for 6-7 hours I am veeery friendly and I got to know just every single nurse there, i even exchanged numbers with some haha i even got godiva chocolate and a thank you card for everyone!

so after a while I was getting the foulder myself and reading, they wouldnt care
i saw one of them telling another mom not to once, but idk if it was a different case i really dont know why u cant read it, i think is just easier to read than asking them for an update every single day, but well thats their job right?
can you ask for it?

i ve been out for some weeks, how is ur lil one doing?

hugs and best of luck in ur jorney

 

[Fiestagal]

We weren't given anything like that on discharge but there was a folder by his cot giving a daily summary of his care - temps, meds given, notes of times we visited etc. It wasn't hugely medical but for the most part he was only a feeder and a grower. We were free to read these. I also filled in his feeding and cares sheets myself.

The staff would leave their hand over summaries on audio tape before the end of the shift and new staff would listen to these before they started work.

 

[TinkerJess]

We never recieved anything I also tried to sneak a look at Noah's notes but was told they were confidential.

 

[evasmum]

Hi Lottie

Just spotted your post, I know it is a different situation but I had to request Eva's Neonatal notes from the Records Department, paid £10. They wanted a letter from me to state why I wanted them. Info is here:

https://www.nhsgrampian.org/nhsgram...ntID=361&p_applic=CCC&p_service=Content.show&

It seems totally rediculous that they wont just give you a copy when they are there?!?

Have you spoken to the Consultant Neonatologist? The Genetics lot were funny about me having all the reports and notes but I asked my Consultant Obs and she just photocopied them all for me from the folder.

xxx

 

[mummyosborne]

Hi
I was sent home with a copy of Ella's discharge notes and a copy sent to her GP's ive found having them extremely handy as no health proffessionals seem to know anything about her history (why they dont read the screen in front of them ill never know!) So im not sure why you didnt get them.

xx

 

[Lottie86]

Thanks everyone. I really don't understand why my neonatal don't seem to want me to know about a lot of what went on.
I had been trying to decide whether to request her entire neonatal notes to read through anyway in case there were more things we hadn't been told about but I was unsure about getting the full notes after reading the first 3 pages of her discharge summary (it was 5 pages long but the nurse whisked the notes away after I got to page 3) as her first 10 days in particular sound horrific and I had absolutely no idea things were as critical as they were. Ah well if I'm going to pay for the discharge summary I guess I might as well get her full neonatal notes and decide at a later date whether or not to read them. Part of me really wants to to know exactly what she's been through and then the other part of me really doesn't as the page about her respiratory issues was awful

With her having had such major lung issues (turns out both her lungs collapsed at different times in the first week and she had bilateral P.I.E.) I think it would be sensible for me to carry that summary around with me when we go away anywhere, especially as my Mum lives on the south coast of England, so if she ends up in hospital I can give them that to read as well as the letter about her tubes etc so they've got a full background on her especially in case they need to anaethetise her.



Thanks for the link Jen I have absolutely no doubt that the geneticist won't want me reading Iona's notes but hopefully that won't stop me being able to get hold of them.
Does it need to be a detailed letter about why I want a copy of her discharge summary and notes?

 

[PleaseBaby]

Weve never got Amelia's I'm in the process of requesting them. My Scbu was awful though and I want to know exactly what they are keeping from us. I had a glance when we had our last appointment and apparently she had NEC which we were never told about so i want to know what else is in there for my peace of mind

 

[freddiesmum]

like everyone it seems, we were sent home with a brief copy of his stay, with mine, OHs, delievery and his complications on it (which they called a badger) but his actual notes from NICU were two folders full and we werent allowed to read them unless we paid. I do think this is stupid as we are their parents, we should know every little detail of their stay good and bad! i think at newborn they shouldnt be protected by paient confidentiality, especially from their extremely worried parents!!

 

[bob2331]

I used to read Harry's nursing notes every day weather the nurses liked it or not! i needed to know everything and research it (as crazy as that sounds but i hardly went home when harry was NICU and i needed to know everything) the doctors notes were a different story, they were left by his cot one day when he was having an eye test and me being me, i started to nose through them to be told that i wasnt allowed to read them!!! Que a kick off from me, demarding to see the head of the hospital (i sometimes go slightly over the top), after that, the notes were locked away from me which i was so angry and still am. I requested a copy of both mine and harry's note for my complaint to be told i have to pay £50.00 each for the privallage to read some doctors messy wrtiing about my own health and my own childs!! Now waiting to here back from the CEO of our trust about this.

They are about babies, we should be able to read everything and anything that is about our children. It wouldnt be too bad if we were told everything but we are not!!!

God, Doctors winds me up, so do all the hospital policies!!! Its wrong and p**ses me off!!!!

 

[evasmum]

Thanks for the link Jen I have absolutely no doubt that the geneticist won't want me reading Iona's notes but hopefully that won't stop me being able to get hold of them.
Does it need to be a detailed letter about why I want a copy of her discharge summary and notes?

It makes perfect sense that you need her notes incase you are admitted to another hospital while away from home, its just crazy bureaucracy!

I'll copy the letter into a pm for you to see, I just put that they were for my own records and understanding.

They did say on the phone at the time that in some cases they charge an extra £50 (!!!), I got the impression it was if the records were not easily accessible.

They also wanted a copy of mine and Eva's birth certificate and 2 other proofs of my identity.

I'll send you the PM now....

I am so glad Iona is doing well but it will be hard to read all she has coped with.

 

[katy1310]

We were given them on discharge - it was 3 pages long and explained mother & fathers details, delivery type, what happened after birth and what was required during her stay. Defiantly did not need to pay and I'm enraged for you that you can't see your own daughters notes!

Same as this - but we were in the same neonatal unit It's shocking that you're not allowed to read your own baby's notes xx

 

[AP]

We were given them on discharge - it was 3 pages long and explained mother & fathers details, delivery type, what happened after birth and what was required during her stay. Defiantly did not need to pay and I'm enraged for you that you can't see your own daughters notes!

Same as this - but we were in the same neonatal unit It's shocking that you're not allowed to read your own baby's notes xx

DH is sitting here livid for Lottie
He said something to me that made me think though? When/if a baby is needed operated on , they ask the parents permission.
How can a parent make that decision when they don't know or understand the full details of their childs health. And why is it THEN they have to ask OUR permission? When apparantly LO has their own "privacy".

It really bewilders us how LO's voice seems to be shared between parent and doctors. That really should not be the case.

 

[PleaseBaby]

Thats a good point. If Amelia needs hospital treatment in the future I'm not in a positionto fully understand what would be best for her because I'm not in possession of all the facts regarding her health. Surely as parents have the final say on treatment we should be given all the info ust in case a situation does occur.

Better get my are in gear sending the letter off! x

 

[lozzy21]

We were given a discharge note with mine and OH's details, details about her birth, why she came into SCBU, what they did why she was there and a list of the conditions she had. We were told if she were to need to go to a&e at all before her due date to take it with us.

I read her notes every day, the nurses even came and explained things for me. TBH i would be suspicious if they wouldent let you read her notes. Makes it sound like they are trying to hide something.

 

[vermeil]

They are about babies, we should be able to read everything and anything that is about our children. It wouldnt be too bad if we were told everything but we are not!!!

God, Doctors winds me up, so do all the hospital policies!!! Its wrong and p**ses me off!!!!

gaaah that`s exactly how I felt too! Some nurses were fine with us reading their daily notes, some were strictly against it. And it was just observations like oh how many times they peed, their temperature etc. I would make me so angry that I couldn`t just read them as I wanted. As for the rest of his records pff there were a precious few times when I was able to leaf through them and the DETAILS in there no one had told us of.... really, REALLY peeved me off. That`s how I found out my son had been intubated twice in two hours his first day of life (why? No one could ever explain it to us later), that he had been blue from lack of oxygen for long minutes, etc etc. Countless details that were played down when the doctors relayed them to us later. I would go straight home and research what I had read - I did a year of medical school dang it, I`m not a complete idiot - and just fume because I could always just get a partial picture.

Fast forward a whole year after his release. He is referred to a center specialised in handicapped children. They ask for a summary of his records, and nicely send me a copy. WHOAH. I learned details in there that no one had told us of. Whole episodes of nec, infections we weren`t told us, etc. etc. gaaaaaaaah. I can 100% understand not giving parents all the gory details as events are unfolding - you can only deal with so much. But later, when we ask they should be able to just retell events as they were and give us a clearer picture.

Ok, rant over I suppose but boy do I understand your frustration