To want to read a medical report for my daughter?

[SloeBerri]

My dd has a condition which involves test at GOSH, these are returned to our local hospital in 2 weeks. GOSH always tell me to ask them for the results in 2 weeks. The letter would be sent to me/ my GP if my child was under GOSH, but as my local hospital has this specialist she has a consultant there.

My local one though do not pass it on, despite requests and I have to wait until the next appointment, often months and months. They do not look at it before the appt so it's not a case of no news is good news. There is also a different consultant for nearly every appt, they have miscommunicated before or not been able to print off letters off their systems at the appt due to network issues. I have clinic covered a few times by total non-specialists who admit to not knowing about her condition, and I've been told things are 'fine' when they miss changes. In short I'm at the point where I have no faith in them.

I'm concerned about changes so I really want to see it this time, I've called etc, confirmed with GOSH they are happy for parents to see it, now emailed.

Is it normal for any speciality to keep parents from actually reading reports in any hospital (they are pretty technical, I understand) and only give very brief verbal summary? GOSH give normally a 2 page letter, and I get a sentence . Part of me just, in light of how rubbish they are, wants the reassurance of casting my own eyes over whatever they write so much on!

My daughter has a heart condition and has had open heart surgery. She has regular appointments at the hospital and we get sent a copy of the detailed letter the consultant writes to the GP after every appointment.

Why can’t GOSH just cc you in?
I’ve had experience of joint care between them and a local hospital and we just always got a copy.

You could try PALS or the records department and get a copy. It must be in her medical records. It costs about £50 to get a complete records printed and sent to you. You can put in a quest to patient records. You don't have to go through the clinicians.

Is this about admin processes or about not wanting to share test results before they've been reviewed by a doctor?

Since may, records should be supplied free under gdpr. If she is 13 or over, she requests, if under 13, you request.
Your hospital is a shambles, contact pals 're their lack if organisation and communication and ask gosh to copy you directly on correspondence and test results. You can always call them for clarification on unknown technical terms.

I get a letter from my local one sent to my GP, but these are uninformative and a bit irratic. On consultant will write a doom and gloom about a low-functioning child, the next will write a super positive one as she smiled for example.

I feel like I've a brick wall on communication, I go to a hospital for example but they base at the CDC. When you try to ring they bounce you between the two, I was shouted at last time by a CDC person for calling when I only called as the letter has their address and number on (turns out relevant person was based there as well). It's like everyone I ring deals with everything except her condition.

I think I may try requesting records for the past, but it won't help seeing it pre-appt/ soon if they don't print it off and add it to her records beforehand.

GOSH just tell me to ask them, it's not joint care as such, just they have test facilities

I believe there are some nhs guidelines about HCPs copying patients into letters unless there are good reasons not to (or even addressing them to patients) but this may not apply to test results which need interpreting first officially even if you are familiar with them

Sorry drip feeding as I think
I would contact PALS and seek clarification

fluffy- I don't know, but they are not always fully shared either by the doctor. Only a brief summary and no detail / actual view of communication.

Yes they are a shambles. I've actually refused to take her for anything else there except this condition as it's so pointless, she was under the CDC for years until I did.

Same as pp we've also got copies for shared care- slightly different as it for antenatal sharecare due to dd1s heart condition and then checks for dd2 to ensure she didn't have the same issues but all our letters said it was the hospital trusts policy to give copies (Guys and St Thomas'). I'd be tempted to query with gosh again and maybe suggest it to their PALS?

fluffy, I kinda get the idea the doctor wants to see first- BUT I think it's unfair to make parents wait up to 6 months on results they have in 2 weeks. The results can result in medication changes and are something parents will be anxious about. If the doctor isn't looking I'd like to see, plus there appears to be no one doctor with an overview. Over the last 7 appts we've only seen one person twice. It's a case of starting over each time, and noone looking inbetween. This time I was really irritated in the letter it was mentioned we needed to bring videos/ a diary when we have to the previous 3 doctors.

To get an idea of inconsistency in letters, the last one referred to my dd as having LD. I think it's on the fence personally still, but she's not being assessed for any-it was a presumption at clinic. It's not though then helpful to then have to share that letter, as people think she has diagnosed LD.

Think id write this to PALS if it was me.

Sorry, I'm not a medic I should say

There are circumstances in which you can request a correction eg if there's a factual error in a record or letter, but the laws quite complex re how they need to go about it - again PALS will be able to help/explain

Sorry to hear all the stress...

Make a subject access request under the Data Protection Act 2018 for her medical records to date. In future, make a SAR around a month after every test asking for the records from when you last requested them. There is no charge under the DPA and they must supply them within a month.

Also as a lay person it seems nonsensical to me if they do tests and then review the results months later, wonder what the point is in that?

Disorganisation I think.

I think I've lost sight of what normal is/ lost a bit of confidence around it all. I was treated as an irritant/ shouted at by one person for chasing up a letter. I spoke to 8 people over 1.5 hours as well, turns out as well the letter was simply written but not posted.

Last year I refused an appt (developmental not medical) on grounds of adequacy/ years of stress and no input and had a reply about 'we don't know what we'll have to do about this, or who we'll have to contact'. Lost my nerve further, it's quite a bullying culture. I had a safe guarding concern raised when I pulled her out of nursery that failed her for example (home visit-totally fine, my dd is well cared for)

Agree with pp - I would phine the department secretary at GOSH and ask to be copied in to any letters/results, explaining that there have been communication issues when sent via the local hospital.

Do be aware that for some tests you might not fully understand the report or the implications of that result, if it is as technical as you mention (thinking of an EEG report for example)

Can you make a request under GDPR? I did this for my son recently when I wanted his notes for a ND assessment. Took about 6 weeks but sounds like that would be quicker than making months for your next appointment.

Trouble is if you miss an appointment you lose moral high ground

If you make a list of these individual concerns might help you to decide whether want to raise this with them or not.

It's hard to be assertive/complain when you need care/treatment as worry be seen as "difficult"

Also are they likely to change? idk

I've not missed any, way in advance I asked for discharge. I explained it was because in 6 appts over 3 years zero outcomes were actioned and it was rendered pointless. I was clear I'd attend if previous things were actioned, but no reply aside from cancelling it. It was for autism, there are no services (never even seen a SLT for example)

I will email GOSH. I'll give a few days for a reply to my most recent email first in case anyone is part time (I know they all work Monday)