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 Post subject: Medical record issue
PostPosted: Mon May 23, 2016 10:11 am 
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Joined: Wed Dec 01, 2010 9:57 am
Posts: 272
When DD2 had her newborn bloodspot screening over 6 years ago..they simply disappeared into a black hole. There is no record of them having been received, sent, filed or even lost! I was told at the time that no news was good news and I would have been contacted if there was an issue, and it was left at that. Now we have been told that there is a likely possibility she has one of the screened conditions, and it turns out no record of her ever being screened exists. I know this is incorrect, but that fundamental aspect aside, we are astounded that such an important test result can simply go missing like this? Has anyone here ever had an issue like this? I contacted the medical records access helpline..and they couldn't really help. Having sent us round the houses contacting all the various places it might have been recorded or filed, they drew a blank. Nothing we can do but write a letter of complaint.


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 Post subject: Re: Medical record issue
PostPosted: Mon May 23, 2016 2:16 pm 
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Joined: Fri Feb 27, 2009 12:41 pm
Posts: 1595
Location: Gravesend, Kent
I only know of one friend who has had a problem with newborn tests, which sadly has had a serious consequence for her son.

Born in the late 1990s he somehow never had his eyes checked in hospital, either on the day he was born by caesarian, or before he was sent home. Mum had had to have a general anaesthetic and her scar was infected, so as she felt so ill, wasn't aware that no-one had checked him.

At the one year check-up he was found to have a cataract in one eye. The consultant he was referred to said that the boy would definitely have had this cataract at birth and would have been operated on soon after. Unfortunately, if a cataract is not removed early, then there is apparently no point in removing it as that eye will never focus or see properly.

The boy just about coped all through school and an apprenticeship and has even been able to learn to drive and pass his test because his brain has adapted to seeing distance and speed of cars, which I think is amazing!

There are many careers he will never be able to do and the worry that if anything happens to his 'good' eye, and that he will be totally blind, does still worry his mum.

At the time she made phone calls, wrote letters of complaint to the hospital and to health visitors, but to no avail. They were totally and utterly indifferent and really didn't care that this boy was blind in one eye. ALL his newborn test paperwork went 'missing' which I find totally disgusting.

Yes, he could have damaged the eye as a boy, but the fact that a simple check in hospital would have prevented it, is very galling.

Sorry not to have any good news, but this was years ago, and sadly you have come up against the same records problem.


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 Post subject: Re: Medical record issue
PostPosted: Mon May 23, 2016 8:20 pm 
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Joined: Tue Jul 21, 2009 9:56 pm
Posts: 8228
I suppose Inkypinkyponky's friend could bring some kind of claim for negligence against the trust concerned if they so wished as it does sound as though the lack of testing or lack of records of the eye test have made a big difference to his sight long term.

Maybe yours the same mm2392 if there is some "loss" as a result of the records having been lost? Don't know. Not a pleasant thing to go through either way.

Can you have the missing tessts carried out now?


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 Post subject: Re: Medical record issue
PostPosted: Mon May 23, 2016 10:29 pm 
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Joined: Mon Jul 27, 2015 6:44 am
Posts: 488
Firstly I am sorry for what you are going through and hope you get a good outcome in the end.
My friends DD had a knee injury some years back and had scans/ xrays etc. When she went to see the consultant for results they had all mysteriously disappeared. Rather than wait again to have them all repeated they went private. I would say it is not uncommon for results to go astray. A good point of contact at hospitals is the PALS (Patient Advice and Liason Service) team.

With regards to screening for cataracts - I work in an eye clinic and we do unfortunately see babies with cataracts from time to time. Mostly they are picked up at the 6 week check that is done by the GP rather than the hospital.
It is always tragic when a child has a visual loss that could have been prevented. The thing that gets missed the most,however, is reduced vision in one eye due to that eye being more long or short-sighted than the other one. There is nothing physical to see so it can only be picked up by vision screening - either pre-school or reception depending on area, or by regular check ups at an optician. Just taking this opportunity to advise all children need to see an Optician on a yearly basis from around 5/6 years, regardless of whether they wear glasses.


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 Post subject: Re: Medical record issue
PostPosted: Fri May 27, 2016 9:37 am 
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Joined: Wed Dec 01, 2010 9:57 am
Posts: 272
Some very sad consequences to what might seem a simple oversight at the time. Indeed Mystery, loss can be immeasurable, aside from the physical and emotional impact, there is also a huge financial impact when you factor in having to relinquish paid employment. With an average of 40-50 days off school each year, it soon became apparent that being obliged to turn up at my desk every day, was not an option!
What staggers me with all this, is the complete vibe of indifference I tend to get from people. Whether it's the school, health care or LA....everyone wants to pass the book. Having a child with long term health issues has been a very sorry revelation for us, everything is an uphill battle. And sadly, I'm sure too many of us know this all too well.


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