I never received my sons heel prick test results in a form of a letter but my Health Visitor delivered them in person and said my sons TSH was marginally raised but they weren't sure if it was excess hormones from me or my son (i am diagnosed with subclinical hypothyroidism ).
My sons peadtrician wrote in a letter that I mislead him about my sons newborn screening tests and they were infact normal. However, I never misled him as I was saying what the Health Visitor told me.
Do I have a right for this to be corrected as it is giving the wrong impression .
The peadtrcian reply is;
As I have left the NHS and no longer work in the UK, I am unable to issue any letters in this regard.
You can approach University Hospital NHS trust directlt and liaise with the patient advice and liaison (PALS) service to help you with this. There will be a due process in addressing it.They will need to approach me independently with full facts, circumstances this has risen , along with copies of the letters etc. So you will need to follow the due process.
Happy to do the needful if approached by the trust.
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Stace268
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A raised TSH would indicate a low thyroid hormone level.
There has been a lot of discussion around the testing of the newborn. Some sources suggest that they should test Free T4 rather than TSH. And some say any question whatsoever should see a repeat test. The precise timing of the heel test affects the results - too early or too late can affect the result.
If you send an email stating the exact circumstances, that should be included in his notes and would be there for future reference. In the circumstances, there seems little real benefit in doing anything more than that - but others may feel otherwise.
Unfortunately I can only afford legal aid and they do not get involved in this type if thing so I am trying to resolve it myself. I have a feeling PALS are useless from what I've read.
I am asking if I have a right to have a genuine mistake re misled my sons newborn screening results when I never even received a letter so how is thar even possible. I am not asking legal advice I know nobody here is legally qualified. Q is in relation to a conversation with a peadtrcian and a Health Visitor.
Have you got the name of the health visitor that visited you and gave you this information - as her notes would report that she visited you about this in the first place , so i would go back to the health visitors and ask for a copy or conversation with the health visitors manager . :/
A complaint to PALS would be the appropriate first step. An alternative would be to attempt to evidence what the health visitor said to you. You could speak to your health visitor and explain the issue, and the consequence, and perhaps request a copy of the health visiting notes (through a subject access request (SAR) there will be details of how to do this on the trusts website.
It shouldn’t make any difference as to whether the HV has retired—what they said to you should be in notes that are held locally. You may want to look into making a Subject Access Request for your child.
You have the right to add your own correction to your record. Perhaps more forceful you have the "Right to Rectification" if there is technically incorrect information on the record. I'm going on holiday so can't go into detail. You submit your request to the Data Protection Officer at the hospital. They liaise with the doctor. I know his no longer there but that's their problem. A correction can then be added to the record and if it has been sent to e.g. a GP they should also resend the corrected letter.
But you must recognise PALS is not independent+ staff are paid by the NHS so there can be conflict of interest! I say this because I worked for an independent county wide advocacy service set up for health+social services issues! I would always seek an independent advocacy service as their priority is helping you+not covering up for the NHS' failures!
I have found PALS to be a good first approach, they are willing and helpful. They are liaison and don't have any power. A good first approach but if you get nowhere then you need to play hardball
You. need to ask the hospital to correct the record first via their DPO if a simple request doesn't work. The ICO is a last resort and they have a long backlog.
They've just replied and said because of time that had lapsed (4 years) since letter was written they cannot change it and only add a note to my sons file, what do I do now as ex partner is using letter against me in court
I couldn't see DPO on there do you mean complain to CEO from PALS webpage
Every organisation has a DPO Data Protection Officer. If you can't find them just address your letter to the DPO. I don't know the time limit but I'd just send a letter to the DPO and not take the the advtyou were given at face value.
as others have said, PALS is helpful especially with getting copies of all the relevant notes for the period of time concerned via SAR’s ( Subject access request)
I have used them recently and got the notes ( about 300 pages) within a week. Another set ( only a couple of pages) took longer, a month, but I said I was going planning to make a complaint. Don’t know if that made a difference in reality.
It would be helpful to have a complete set of all the relevant notes from all parties concerned as without that, you have no evidence.
Although the data controller manages it in practice thet have to take the word of the doctor on clinical issues as they are not medically qualified. It doesn't apply to medical opinions, it applies to factual issues only. In some cases incorrect data can be left unchanged, for example, when an incorrect diagnosis is mafe based on the facts at the time. Sometimes the original document may be amended and other times it is left unchanged and a separate correction put on record. It can get very complicated.
When I was searching for the cause of all my symptoms I had a situation where a neurologist had written something which was grossly incorrect. An 'all-in-her-head' diagnosis. (He also was very inquisitive about sexual history - which I didn't engage with ☹️).
His letter in my medical record, I felt, put me in a bad light and would probably influence any consultant who saw me thereafter - if they read my notes. Belatedly I discovered through online reviews that this neurologist had a 'history'.
I raised a formal complaint with the hospital through the neurologist's manager. I wrote a letter directly to him and cc'd the hospital executive board. This resulted in a face-to-face NHS Local Resolution meeting, in which I put forward my case. I don't think I involved PALS at all. You should push for a local resolution meeting.
The result from this meeting was a note was added to my medical notes next to the neurologist's letter. I asked for a 'unsafe diagnosis' note. Apparently, they can't remove but they can add. I'm not sure if this actually was added or that it had any effect. However , I feel that I was seen in an unfavorable light in NHS consultations after this neurologist's consultation letter. It also made me stop searching for answers for a good long while.
I'm glad I went through the complaint process as this neurologist was a poor practitioner and 'slightly dodgy'. I'm not sure how much difference I made but, on the upside, the neurologist had to go on a training course to improve his doctor -patient interaction. Which I'm sure he hated!
First get the hospital records. Look on the hospital website and there should be a form to do this. You may need to prove who you are by sending a photo of your driving licence, or the top of your bank account. All this can be done by email.
Look though the records carefully. Mine contain so many errors! I changed sex to a man twice! Dont be too alarmed by this - hardly anyone on the medical staff read the notes!
The Health Visitor may have misunderstood the results, or got two babies results mixed up - they do see so many!
As your baby does not seem to have had any treatment, the only harm may be in the notes. They cannot alter the notes but they can add something to show that the reading was OK or something.
As the pediatrician has retired, any faults will go nowhere. I hope you and your son are doing OK now.
It's the Health Vistor who retired. And I do not believe they got results mixed up about my son had a raised TSH when born as his blood results a few years ago were a subclinical raised TSH like me. and biotin skewed his other results. The peadtrcian has gone to work privately but the response in my Q above is what he said as I contacted him in his private practice.
And therein lies the problem. Having gone private, the paediatrician can’t refer to their NHS work without being formally requested to by the NHS. It would be misconduct if he attempted to, which is why proper channels have to be gone through—that’s what he’s saying.
OK thank you for clearing up, although circumstances this has arisen, should you not be allowed to correct a mistake regardless of whether it has caused any problems 'yet' seems backward way of doing things.
This reply BTW was regarding the peadtrician reply (not) directed at you, I am dyslexic amongst a whole range of other things but wanted to make sure u knew what I was referring to here.
I have the newborn screening tests at the bottom it says old copies can be destroyed and on sickle test it's says not detected instead of not suspected
I don't know as she delivered that orally and she said she weren't sure if it excess hormones from me or my son. Funnily years later he did have a raised TSH and very symptomatic.
they way it reads to me , (and im not any sort of legal expert , just applying what i see as common sense).
The word 'misled' is not incorrect, and therefore it doesn't need correcting/ removing .
the peadiatrician was misled ,by being given incorrect information .
the word misled does not mean you/ or anyone else intentionally misled him, it's just a statement of fact , he was mislead by being given the incorrect information.
as were you ..... you were also misled by being given the incorrect information verbally , which you then passed on to him innocently .
'misled' does not mean the same as 'intentionally misled' , and unless his letter says/ or infers that you intentionally , or deliberately ,misled him then it's not a problem.
no it's not positive , but it fit's the facts , he was given incorrect information , so realistically i think it's not likely to be possible to get anything added to your records that give a better/ different impression at this point, especially as you cannot get evidence of the exact words a health visitor said to you many years ago. The best you can do is point out that it was unintentional/ not deliberate as you had received incorrect / unclear information from the Health Visitor .
I feel more angst is being felt by continuing with this discussion when a focus instead on the useful advice given by responders would perhaps point you in a positive direction and towards resolution. After-all we know worry and stress are bad for our temperamental conditions and to be avoided. Good luck with solving your dilemma.
Stace268, having read some of your other posts across other HealthUnlocked forums, I totally get that this has been incredibly distressing for you—I can’t imagine how difficult it’s been. I genuinely hope you find a way forward and manage to get your views across.
But your question here isn’t strictly speaking a question about a thyroid disorder—it’s about GDPR, about subject access, your rights under ICO etc—and try as we might, this is such an unusual set of circumstances it was incredibly unlikely any of us would be able to help very much. Please keep your anger focused on those who deserve it. Everyone who’s posted here has only tried to help. We’re patients and ordinary people, not professionals. Wishing you all the very best going forward.
What anger? Sorry u felt that way. Just going through the requirements for the requests but noted the process I will figure the rest out as I go along.
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