NHS and patient details and sick kid

[alicemorgan]

DD is failure to thrive (6 years old) and below the 0.4th centile. Taken a PPI meds for years. Diagnosed with Reflux. Tummy ache every day. Has food aversion and not put on weight for the last 2 years. Is currently the weight of about 3 year old.

NHS hospital decided to do an Endoscopy and found ulcers and inflammation. They said it looked like a bacterial infection. Blood/stool and biospies were taken. I was supposed to get phone call from the consultant after 2 weeks about results, but nothing. So after 4 weeks I rang secretary, who discussed with a different consultant, and then the secretary rang back to say that this consultant looked at the results and said to increase his current meds. Nothing else has been found! He said "She's is ok." I am still waiting for GP to receive instructions from hospital to increase his meds.

In the meantime, NHS have moved our follow up appointment (to discuss results). So it will be 6 months between the Endoscopy and a discussion with a doctor. I know that the NHS is totally overstretched and I have been pretty happy with the hospital up until now. So we've decided to see someone privately, so that we can move forward quickly.

However, the secretary said they will not directly send me any of DD's records. They will only send via the GP. The GP has to request it.
Then i rang patient records dept who was a bit miffed by secretary's response. She said "the doc maybe sitting on the results for some reason" and they said they will send me all of the info I need but to request it formally and I have to allow them 40 days to get the info.
This is fine. I can do that.

But it has really agitated me. It's hard enough having a kid who has been sick for years without having to deal with this kind of stuff.
AIBU?
Why are they so guarded with their records ?

Ok OP - it makes sense to use the insurance if you have it. Hope you get the help you need for your little one.

You'd think wouldn't you?!.

Personally I would contact a gp secretary today if you can to see if they can either access the results themselves or whether the hospital has forwarded them and they've been scanned in/filed/reviewed at the gp end and not sitting in someone's intray.

Sorry you're going through this on top of all the worry for your DD.

I agree with other posters saying the endocrine route should be investigated too. There are (rare) growth disorders which largely present as gastric disorders. Has your DD always been small, or did she drop off fairly suddenly after birth? If so, it might be worth giving the Child Growth Foundation a ring here . They have a very friendly helpline and a Facebook group.

I do hope you get it sorted. For us, booking a private appointment somehow magically resulted in a sudden NHS referral to our specialist kids hospital

Thanks cornetto . Good GP is the way to go!

latin no he was 50th centime. It all went down hill at about 8 months old. He's always had reflux but weaning was a nightmare and his vomiting got more frequent and then food refusal started. So im thinking allergies or bacterial infection.

Before you see the next doctor keep a food diary of everything he eats or drinks. Might save some time, I was asked for one at my sons appointment and had to go away for a few weeks to fill it in.

good idea notapizza

Ahh well, that's good news in a way. Yes, you definitely need to see a good gastro don't you?

I'm not very knowledgeable on the records thing but I hope you manage to get hold of them and your child gets the help they need soon. So dreadfully worrying when they won't eat.

Latin thanks alot for your advice. It is appreciated.

Put what you put in your first post addressed to the CEO of the trust noting you expect a reply within seven working days. Copy to your MP requesting an MP's surgery meeting with him/her and add that as as enclosure to CEO's,letter.

I guarantee you will have the manager responsible on the phone in 24 hours and it will be sorted before the end if the week on the NHS.

Diabolical and all too frequent.

If you are interested I can also recommend an excellent paediatric gastroenterologist.

Forgot to say, he's in London as well.

MEgirl yes please, can you PM me please ?

I am a medical secretary in Gastroenterology in NHS (not peds) and have worked in other depts. We ALWAYS send a copy of any letter to GP and Patient so not quite sure why you shouldn't have a copy of any letter from a clinic appt or test result letter ?

If a patient called as they had not received their copy I would just print and send another. I am just outside London Trust. Can you ask consultant to call you I know ours would ?

Secretary may be reluctant to send records to you directly simply because there are procedures to follow. It's tedious but that's how it is. I couldn't send any records directly to a patient which I couldn't see had already been copied to them without first getting the consultant's approval. That doesn't sound like it would take long but admin time with a busy consultant is like gold dust.

The Access To Health Records route (which you take when you request them yourself from the records dept and have to wait a while for them to be made ready) is just the 'official' version of that procedure. The person you spoke to saying that the dr might be sitting on some results is just speculation and a pretty silly thing to say tbh, obviously that would just worry a patient to suggest such a thing.

yanbu at all. your poor child.
when we had a similar situation I requested all files from the hospital via pals/request form and also directly from the consultant's office (being sickly friendly).
took everything to private cons, which meant not many tests had to be repeated.
good luck.

I have heard another account of someone elses records getting 'lost' at the same hospital. Even PALS couldn't help them find them.

All tests (including invasive and high risk) had to be repeated elsewhere.

I hope you get what you need without too much delay.

can you phone the secretary? being really friendly helps imo.
I brought her a usb stick and she was able to give me what I needed there and then, including all the images.
had to pay a small fee to the hospital and a box of chocolates for the office

Medical Records will send the full history which anyone can request of their own, and that's why it will be under the 40 days as that's what the Data Protection Act requires.

The secretary probably isn't allowed to send them to you. Information Governance is a major thing and people make errors and records end up in the wrong hands, that's probably why she is saying go via GP, it's a safer method of distribution. It's red tape as opposed to not wanting to help.

DS was under this gastro pead and he was really brilliant. DS had awful reflux caused by allergies and had a similar pattern of dropping centiles from 8 months.

I'm amazed this has been allowed to go on so long. What a poor care and horrible experience for you all.

FWIW I was diagnosed with coeliac disease in my 30's. No family history. I was always under weight, smallest in my class (and family) and a massively fussy eater. Meal times were always battle.

I hope you get some answers asap.

Thanks all.

I have been very nice to the secretary but not really helping. I think the secretary gets alot of this.
Going to ask GP to request records.
Patient records dept said 40 days but means I have to wait 40 days for private appt so going to try via GP route.

Thank you curlywurly :) That's who we are thinking of trying!

It really has been going on for too long.

I know this is going to sound like a weird question but faxing endoscopy pictures is not going to be any good is it ? Should they post images on a disk ?

Definitely go to pals. I won't bore you with details but dh was told 6 month wait after they've messed up over the last 10 months. Interestingly after going to pals they found an appointment the following week!

yes, images should be on a dvd or usb stick