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 ?

[littleducks]

Not actually answering your question but could you arrange to see the sane Consultant privately?

Or you could arrange to view records and take notes or pay for copies?

[Mistigri]

I don't really understand why patients don't automatically get copies of their results.

We're in France and you automatically get copies of almost all test results here. I took DD for an ultrasound last Wed, and walked out with the radiologist's report which will also be copied automatically to the requesting doctor. We go back to the GP this week - if she hasn't yet received her copy of the results directly from the clinic, she will be able to read my copy. (In practice GPs seem to get results next day in most circumstances, so I am sure it will already be in DD's file).

[Micah]

I dont think its that they're guarded, its they're drowning in paperwork.

Did you speak to your specific consultant's secretary? If not, phone back with a bullet list in front of you. Dont bother with anyone else. The secretary is key, be nice, keep it polite (they deal with shitty attitudes from patients all the time, being lovely to them gets you a long, long way), ask what the timeline is.

Also- ask if your consultant works privately. If you are an existing patient everything will port over much more smoothly..

[JaneHair]

Has coeliac disease, growth hormone deficiency and thyroid been checked?

[alicemorgan]

Yes have spoken to secretary. Have kept it nice and polite but I feel like I am getting blocked. The consultants that practice privately have a rep for doing nothing. Hence we need to go to different consultant.

[TheGreatSnafu]

What Micah said - speak to the secretary, explain that you have a child with complex medical needs and that you would like to have copies of xyz test results done on specific dates, have your child's hospital and NHS number to hand. Tell her that you are coordinating care across consultants and that you wish to build a historical record and prevent duplicate medical testing.

In my 10+ years of dealing with NHS consultants and complex child medical care this has never failed to get me test results. Alternatively write a letter stating the above and request specific results after each test.

[alicemorgan]

janehair I hope so but they have not told me exactly what they have tested for other than hpylori. They said endoscopy is a catchall

[TheGreatSnafu]

Xpost sorry.

[Cheby]

Make a request for her hospital notes under the DPA. PALS will be able to help you do this. You may have to pay an admin fee (£10 or £25 usually depending on how much there is for them to copy) but it's probably worth it to just get everything together and enable you to see the private consultant.

If you tell PALS why you want the info they would be particularly dickish to make you wait 40 days. It's only an admin person photocopying for 20 mins after all.

Good luck, I hope you get it sorted quickly.

[alicemorgan]

thegreatsnafu thank you. I will ask them in that way via the GP. I have asked the secretary twice and she will not back down about it being requested via the GP.

[alicemorgan]

chelby PALS is a good idea.

[TheGreatSnafu]

Also, as you probably know, if he has ulcers, inflammation and FTT, he should not simply be given an increase of his PPI! Where are you, OP? I have a great NHS/private paed gastro who will not fob you off, he's thorough and provides excellent care although his clinics always run late. He's in London and had shut his books to out of trust referrals but they may be reopened. PM me if you want his details.

Your son deserves better! So sorry, you are right, it's hard enough dealing with a poorly child, let alone slogging your way through getting good care.

[Theodolia]

The secretary is wrong on that one- if the notes are held by the NHS Trust, the request will be to the Trust, the gps nothing to do with it.

[alicemorgan]

the great snafu yes please. I have booked an appt with a paed gastro in London but if you have any recommendations I would be interested to hear them via a PM. Might be same chap. Thank you :)

[alicemorgan]

And yes I realise that just increasing PPI for stomach ulcers is just not good enough! Thank you for confirming it.

[alicemorgan]

theodolia I agree. I think patient records suggested that too. I am a bit concerned that this secretary is going to delete records if I don't play ball and request via GP. The hospital have a rep of losing records!

[Cornettoninja]

Just as a 'backstage' bit of insight. Releasing info is massively dependent on the people your asking.

If the consultant has issued a report on the results (and the bane of my life was chasing some Drs for their paperwork, I know there's a lot to do but if it isn't documented it didn't happen. The amount of times they'd review results but not note or dictate an action or discharge was ridiculous), but the results aren't addressed specifically for the patients attention then strictly speaking it's about you, not to you. Even with a data protection request information can be witheld. You may have come across a jobsworth or someone whose had their fingers burned with dp before. Trusts take it extremely seriously.

Have you asked one of the secretaries at your gp surgery to contact them on your behalf? It's not an unusual or unreasonable request at all, and should hopefully be quicker than getting embroiled with numerous hospital departments. Start that process too just in case you're unlucky, but hopefully you won't need to wait for them.

[notapizzaeater]

I'd be banging in the door, like the other poster asked - has he Been tested for coeliac ? Thyroid ?

Is there a family history of any auto immune disease ?

[alicemorgan]

cornetto seeing GP later in week to request all notes via them. Hospital should at least have biopsy/blood/stool results shouldn't they ?

[alicemorgan]

No history of auto immune disease. I have no idea what they tested for. They just said the endoscopy is a catchall. Without results or a chat with a doc this leaves me clueless. We do have a family history of gastritis.

[PeppermintPatty1]

Your poor child. Time to make a bit of a fuss. You should not need to pay privately. I'd write to the Consultant and set out what's happened from your perspective so far and express your disappointment and concern at the situation; you should have an explanation as to why appointment has been put back. Set out how your child currently is. Be prepared to escalate - you can copy in the Clinical Director, Directorate Manager and PALS if you like - they would rather avoid a formal complaint. Ask for referral to another centre who can help you in a more timely manner if they are unable to help your child now or request a second opinion. Ask to be copied into every shred of correspondence about your child from here.

[alicemorgan]

peppermint we are covered under insurance. Haven't got much fight left in me and tbh i've lost faith in them so i think we need to move on.

[Cornettoninja]

Just to note that the gp will receive a copy of everything from the hospital, so they're definitely the place to get on board with chasing if you can.

Also it's a gamble on whether medical records/legal department will rush it through. It would completely depend on their workload, it might be a 20 minute job but in amongst a queue of 100 other 20 minute jobs as well as more complicated stuff won't mean it's going to get pushed through.

Op don't worry about stuff getting lost - they'd be daft to try that, there'll be seperate evidence of the test appointments and blood tests. Losing any document of any stage and fobbing you off isn't worth the shot storm that would start.

[alicemorgan]

btw. thank you to all of you for your support.