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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To expect paediatrician letters to be written in simple language

62 replies

Hurr1cane · 03/12/2015 13:14

Or at least explained a little bit?

After an appointment where he didn't tell us any results just asked more questions we got a letter that says

'Very long chain fatty acids'
'Prominence of pervivascular spaces in the peri ventricular white matter adjacent to bodies of lateral ventricle no perivascular spaces are noted between the basal ganglia on both sides the thalamus brain stem'

What the fuck am I supposed to even do with that??? Google is terrifying. I feel like just giving up!

OP posts:
VegetablEsoup · 03/12/2015 17:15

yanbu at all!
not about the letter but tbh I would comain about the consultants bedside manner. what a tosser not to explain things properly.

CremeBrulee · 03/12/2015 17:21

You could try the Patient Advice and Liaison service (PALS) for the Trust that the consultant works for. They should be able to help you get some answers that aren't in clinical jargon.

Original poster
Hurr1cane · 03/12/2015 17:33

Thank you I'll try PALS next week when I've got my head back on properly

OP posts:
Sidge · 03/12/2015 17:46

PALS really aren't the best people to help you here in the first instance, and neither is the GP.

What you need is a call back from the consultant to explain the letter to you and what it means in real terms. Phone his secretary, and explain you urgently need to speak to him as you're very worried. I've always found the secretaries very helpful and understanding.

I hope you get some answers soon and more positive news. Hugs to you Flowers

Original poster
Hurr1cane · 03/12/2015 17:49

Thanks everyone. I understand the letter now as I got help from a lovely MNer.

OP posts:
Musicaltheatremum · 03/12/2015 17:50

I'm a GP and I havent got a clue what all that means. I don't know if it's normal or a variant of normal. That result should never have been sent to you, it just causes more anxiety for you.

Original poster
Hurr1cane · 03/12/2015 17:57

Thanks MTM. I didn't really expect the GP to understand to be honest. I'm pretty clued up myself these days on things DS specific and didn't have a clue.

Luckily I think I understand things now and know where we're at thanks to someone lovely on here who took time out of their own life to explain things to me.

OP posts:
VocationalGoat · 03/12/2015 18:00

This reply has been deleted

Message withdrawn at poster's request.

Original poster
Hurr1cane · 03/12/2015 18:05

Thank you. DSs neurologist is really good. I can tell this by her letters, but I really struggle with accents (my problem not hers) I should be good with accents because my family is from all over the world but I think that fact has made me worse, I can understand them but no one else. But my DP is pretty good so I'm hoping he can get the day off to come with me and help with my understanding.

I know I'm very lucky to have her and I will be pushing for the appointment. I have been pushing for the re referral as she wrote saying she wanted to see us but it's been hard because of the retirement of our old paediatrician and the delay in getting a new one in place.

I'm at the point now where I just want to know how much time I have left with him a be what I should be expecting in the future. I've been in denial I think, refusing wheelchair services until I had absolutely no choice, saying he didn't need DLA then applying with no support and getting high rate everything indefinitely, which is practically unheard of I've found...

OP posts:
CremeBrulee · 03/12/2015 18:05

Really glad you got some answers Hurr1cane. Agree with the pp - get your elbows out and push for that Neurology appointment.

Original poster
Hurr1cane · 03/12/2015 18:13

What is CSF glucose treatment for blood glucose 4.8???

He hasn't had any treatment for glucose

OP posts:
Badders123 · 03/12/2015 18:15

It means there is glucose in his cerebro spinal fluid.
I'm sorry I don't know what that level means.

Badders123 · 03/12/2015 18:16

Really...phone the secretary tomorrow and get the dr to talk you through this x

Original poster
Hurr1cane · 03/12/2015 18:18

Thank you. I'm going to call up next week when I've got my head straight

OP posts:
Badders123 · 03/12/2015 18:32

Good luck x

Original poster
Hurr1cane · 03/12/2015 18:33

Thank you everyone for helping. It means so much.

OP posts:
Booyaka · 03/12/2015 18:35

PALS are the right people here. The letter perhaps isn't enough for PALS on it's own, but writing down inaccurate things like he can understand and comprehend when he clearly can't is definitely a PALS matter. That, in conjunction with the letter, is definitely a PALS matter. It has all the hallmarks of a doctor who can't be arsed. OP, what was his English like?

Original poster
Hurr1cane · 03/12/2015 18:38

It was a different paediatrician who wrote that he could understand. He was a locum. Not the one that actually got the job. Il never have to see that locum again. With any luck.

There first thing the locum said to me was "oh! Looking at DSs notes I wasn't expecting someone who looked normal!"

Direct quote. No word of a lie.

I didn't complain but I was all set to ask to be referred elsewhere if I had to see him again. Luckily the new paediatrician is pretty good.

OP posts:
Original poster
Hurr1cane · 03/12/2015 18:40

Also to be completely fair to the new paed, this was the first time he'd seen DS, who is a very complicated case, for all I know he might have thought the results had already been explained to us.

OP posts:
Badders123 · 03/12/2015 18:41

I can empathise...I could fill a book with the inappropriate and downright offensive things said to me by hcps.
But...I always felt my focus should be ds1 so never took it further.
I still look back on that time with immense sadness though. The people paid to care just...didn't :(

Original poster
Hurr1cane · 03/12/2015 18:43

Thanks badders. I just laughed it off and told myself he was clearly jealous because I had created such a perfectly beautiful child. I know I should be more annoyed but I don't care enough. I just want to know what's going on with DS.

OP posts:
Badders123 · 03/12/2015 18:45

Yes.
Totally.
Bigger fish to fry :)

Original poster
Hurr1cane · 03/12/2015 19:22

And DS is clearly the most good looking little boy in the whole world so no wonder he commented Wink

OP posts:
Badders123 · 03/12/2015 19:30

Well....that goes without saying! Grin

bigbluebus · 03/12/2015 19:33

I think those of us with DCs with complex health conditions understand that if we complained about all the inappropriate things that are said to us by HC Professionals we would spend a very large part of our lives complaining.

I once had a locum GP ask me about my DDs condition. I explained all her difficulties only for him to respond "So she's like a large baby then". She was 11 years old at the time! He had already told me on the phone earlier that day that she couldn't possibly have Shingles so he had to see her to see the rash. Guess what she had? Yes Shingles. It had alreday been diagnosed by the school nurse!

I was so relieved he was only a locum and not a permanent member of our GP team.

OP, Please do ask your Paediatrician for an explaination. I come across many Doctors who talk in jargon. My DD had a recent visit to A&E. She went in with one of her carers and then DH & I arrived afterwards. The Doctor asked me lots of questions about DD all in medical terminology. DH & the carer stood there not understanding what I was being asked as I answered all the questions. The only way I understood all the terminology is that I have picked it up over the years when dealing with hospitals - I do not read medical dictionaries for a hobby Grin. But Doctors need to be told when they should talk/write in laymans terms - they often don't even realise they are talking an alien language.