To expect paediatrician letters to be written in simple language

[Hurr1cane]

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!

[OurBlanche]

Have you contacted your GP and asked for a translation appointment?

This is one of those reasons why they never used to send copies of the letter to parents. The letter needs to be clinically precise, parents need a clear and comprehensive chat.

You could ring the consultant's office and say just what you said in your OP. Get them to correct themselves. But I suspect your GP might be a better bet.

Very long chain fatty acid test is a test of the adrenal glands. Everyone has perivascular spaces but a lot of them can be associated with some conditions that I assume you have Googled and found terrifying. But if you can't tell what the results are/indicate you do need to go to your GP and find out the reality!

[Badders123]

Ok.
No Idea.
Can you phone s secretary and ask for the dr to phone you and explain?

[OurBlanche]

Sorry, I meant to end with:

Try really hard not to panic. Get a bot angry instead, maybe. But do ask your GP for an appointment, in person or phonecall, as a matter of urgency as you are now very anxious and pissed off.

Good luck.

[Badders123]

Not the GP...they wont have a clue.
Phone his secretary and get it from the horses mouth (so to speak)

[Hurr1cane]

I've literally just had an appointment with him and he said nothing, which half makes me think he doesn't know either. I've got a referral to the neurologist but that's going to be a long wait. I half wish they wouldn't send me letters like that.

[OTheHugeManatee]

YAB a bit U. The documentation needs to be clear and precise and give any doctors relevant information in the case of another referral. They're giving you this information in the interests of transparency.

You must be worried for your DC though and Dr Google is always horrifying. Can you get a GP appointment for them to explain what's going on?

[2rebecca]

These letters are usually mainly for the GP and also so that when the consultant sees you in clinic again he can look at his last letter as a reminder of what is happening. I think sending a copy of the clinic letter to the patient or addressing the GP's letter to the patient but not changing the language isn't helpful.
I don't think it should be the GP's job to translate the consultant's letters though, particularly if it's complex MRI changes. The consultant should have discussed the results at the appointment or arranged a follow up appointment when the results are available. .

[Hurr1cane]

I might ask the GP then. It's been going on so long now and nothing ever comes back but he's regressing and they keep telling me to prepare but I don't know what I'm supposed to prepare for

[Hurr1cane]

He had the results at the appointment. These results are from last year but we've only had one appointment since and it was with a locum who was appalling. And by appalling I mean he asked DS what class he was in, DS said Spiderman and he wrote down that DS has good understanding and communication. Which isn't true

The letter from the new paediatrician says he can't speak which isn't true either, so now it looks like he's regressed at a rate of knots when he hasn't, just a little bit

[OurBlanche]

Talk to your GP, and/or your practice manager and tell them how adrift all of this has left you feeling. They will be able to give you a broad outline of what is happening.

The pead's office should also give you more clear information if you ask. If you contact PALS they will be able to help you, they are not only there to guide a complaint, they also help people with any health related questions and to become more knowledgeable about their own healthcare.

www.nhs.uk/Service-Search/Patient%20advice%20and%20liaison%20services%20%28PALS%29/LocationSearch/363

[fanjoforthemammaries7850]

I would phone the paediatrician and ask them to call you to explain it.

[VagueIdeas]

This is the problem with hospitals sending parents copies of letters not written with them in mind, isn't it? Of course you're worried, but ultimately that letter wasn't supposed to worry you or distress you.

In an ideal world parents would receive a differently worded letter minus the medical terminology, but of course that could never happen, the NHS being as it is.

[writingonthewall]

Have you contacted your GP and asked for a translation appointment?

Please don't do that. We are hugely over stretched as it is and really don't have the time to be doing secondary care's work for them. If you rang me for this, unless it was a matter of a minute or two on the phone I'd tell you to get in touch with the consultant.

[OurBlanche]

Even when she has just come from them and got no usable info? I am glad you're my GP... who saw me and gave me a translation of a consultant's letter a couple of weeks ago.

Like OP I had a letter that was a list of results, no explanation that made sense to a non medic. My next step was my GP, who talked me through the results and gave me more info so I can make a properly informed decision.

I was under the impression that that was part of a GPs role. At least, it has been with every GP I have ever seen.

[Booyaka]

Lazy sod couldn't be arsed to dictate two letters. I have worked as a medical secretary and with things like that he should have dictated a second to explain to you what it meant. It would only have taken him a minute to do, lazy bugger. Even if it was going to the GP I would expect it to have a fairly clear paragraph at the end setting out interim conclusions and planned/needed actions. It sounds to me like he's deliberately written an opaque letter that doesn't mean much to cover up that he's not done what he's supposed to do.

I would contacts PALS (Patient Advice & Liaison Service) at your hospital who deal with the first line of complaints. I think that him saying that he has good understanding and comprehension in the circumstances you describe is a huge issue that you should raise, and this letter as a secondary concern.

[writingonthewall]

I was under the impression that that was part of a GPs role.

if you're seeing us anyway and need to chat about what is going on - yes
an appointment purely as a result of the consultant's poor communication - no, you need to ask them directly

We are drowning with increased demand and things being pushed out of secondary care with no resources.

[hazelnutlatte]

I work with neurology consultants and none of them would send a letter like that. Other than the 'long chain fatty acids' bit the rest looks like it was copied and pasted from the MRI report (which we don't send to patients). Our GP letters can be a bit technical but would say something like MRI showed blah blah changes consistent with whatever disease it matched, or a number of possible causes of its not clear. The GP is not an expert at interpreting MRI results and so depending on whether the rest of the letter sheds any light they might not be able to provide any answers. I would go back to the consultant and ask them to explain properly.

[lljkk]

Booyaka is right about lazy sod.

OP is managing a child with complex health condition & gets this. Argh.

Could chuck it in bin & if ever asked again reply "Well it obviously wasn't information meant for me so no point in keeping it."

[Booyaka]

I agree with almost all of what you've said Hazlenut. But I think he's just read out a bit of the MRI report to tick a box that the letter's gone and hope nobody notices so that he doesn't actually have to think and make a plan/give a diagnosis.

Given that I would caution against flogging a dead horse with this consultant and go straight to PALS. That might mean the OP will feel better sooner.

[Hurr1cane]

Sorry everyone have had a mad afternoon but really appreciate all of your advice. My GP is fantastic at stuff for me, (e.g. Knowing that I get recurring water infections and not dragging me away for DS for appointments that aren't needed for the anti biotics and just getting no me to send in a sample then pick up the prescription) BUT they aren't very good with the complexity of DS. So I wouldn't expect them to understand and they couldn't get the answers from google or else I would be able to

The letter wasn't from the neurologist. The only letter I got from her was telling me they were testing for Newman pick type C. The paed told me they have ruled that out now but they didn't write and tell me that so I've been worried sick for months.

I know the NHS is up against it at the moment which is why I'd never kick off or make formal complaints or sue (which has been suggested by some people due to certain misdiagnosis) I would never do that because I don't see how that will help anyone.

BUT

I just want to know what all this medical waffle means!

[Twindroops]

Oh OP :-( I have a friend whos child had NPC, what a scary time for you. I would try the consultant's secretary I usually find them helpful (and you can use email which I much prefer to the phone).

perhaps post on the special needs board or there is another website I can really recommend too.

(I have a complex child too and have an idea of what you are going through)

[Hurr1cane]

I'm on the SWAN UK support page oft hats what you mean. I just don't know what to do anymore. I've been positive for so long but with every letter that states his condition is 'progressive' and every thing they say they're looking into is horrific and fatal.

That little boy is everything I have in the world. I can't lose him.

[Badders123]

I'm so sorry, love.
But your GP isnt the right place to get info.
Have you tried the Drs secretary to get someone to call you back? I have found them very helpful in the past.
I know what it's like when you are looking after a poorly child and people are telling you to complain and write letters but it's all you can do to keep putting one foot in front of the other. Not helpful.
Don't complain if you don't what to, but you do need answers.
I hope someone more knowledgable can help X

[Hurr1cane]

Thank you. I know the GP won't be able to help although I do know they'd try their best.

[easterlywinds]

I think you need to phone the consultants secretary and explain to her what you've said here. Let them know that you don't understand (maybe your paediatrician has assumed you have a better understanding) and about your worries. Make notes in advance so you don't forget anything. Then ask her if you need another appointment or if the paediatrician can phone you to discuss these issues.