URGENT: Wales GP is wrongly refusing to discuss 10 y/o child records and refusing exp

[dazed]

In early April, 2021 I asked at the local GP in Wales about my 10 year old son’s medical records.
The Physician Associate said it should be fine, but had to check with the Doctor.

He came back and said that, despite both myself and my son being with the surgery for over 10 years and known to all staff, I would need to put it in writing, along with my son’s long form birth certificate.
6th April 2021 I dropped off the letter and form. After some nudging, on the 20th April I received a letter with one single line:

"After careful consideration the practice has decided to decline your Subject Access Request".


There was no name or other explanation, and the signature was unreadable. I called several times and tried to get more clarity, particularly as to why they had chosen to interpret “can I discuss my son’s health” as a subject access request, but was never called back. To be absolutely clear, there is no criminal or family court order or conviction of any kind, or anything that dimishes my PR.

As time passed I became increasingly concerned about my son’s welfare, particularly his rapid weight gain, total isolation from friends by his mother etc, and on the 24th May, I wrote back reminding them of the NHS guidelines and GMC section 55

https://www.gmc-uk.org/ethical-guida...people-parents
55. Divorce or separation does not affect parental responsibility and you should allow both parents reasonable access to their children's health records.
https://www.medicalprotection.org/uk...d-young-people
https://www.themdu.com/guidance-and-...-are-separated
https://www.nhs.uk/common-health-que...health-records
A person with parental responsibility will usually be entitled to access the records of a child who is aged 12 or younger.

I also explained in brief that I was very concerned about my son’s wellbeing and welfare.
On the 27th May 2021, the practice manager emailed me back:

Thank you for your e-mail of the 24th May. I have taken note of your comments and will look into the matter further and furnish you with further information as soon as possible.

On 3rd June, I called and was told someone would call me back.
On 7th June, I called again, and said that if no-one would answer my question or provide an explanation, that I would like copy of their complaints procedure.
On 9th June I received an email, and again, no name was given:

This is just to confirm we have received your e-mail and as has been previously stated to you we are seeking advice. When we have done so we will be in a position to advise you further. We are not sure how long this will take but can assure you we will contact you as soon as possible and in a reasonable timescale.

On the morning of the 11th of June, I phoned the local Health Teaching Board which oversees the practice.
On the morning of 12th June, I received a copy of their complaints form, and the following letter, dated 11th June.

We are sorry that you are unhappy with the decision to not comply with your request for information about you son. We accept that you have parental responsibility and have a right to request information about your son, but that does not equate to a right to be given information, as regardless of his age that information relates to him, and his interests are paramount.

We can reassure you that we have considered both our professional obligations under GMC guidance, and the guidance that relates to disclosure of medical records under the Data protection Act, and also taken advice about our interpretation of the guidance. We have a duty of confidentiality to all patients.
In the case of children we would not disclose information about them in the absence of their consent if they have capacity to provide this, regardless of how old they are, or if the disclosure of that information may go against their best interests. Taking these factors into our account, it is our decision that it would not be appropriate to comply with your request, but unfortunately for confidentiality reasons we cannot provide more specific details for either our initial decision, or this review of the decision.

OK, that needs some serious unpacking - there are a number or non-sequiturs and unrelated clauses on those long run-on sentences.

We accept that you have parental responsibility and have a right to request information about your son, but that does not equate to a right to be given information, as regardless of his age that information relates to him, and his interests are paramount.

That's utter nonsense. So, if a 3 year old got a terrible disease the doctor wouldn't be able to discuss it with the parent?? A right to ask for the information is surely a right to have that information!


"We have a duty of confidentiality to all patients."
He's my son. He's 10.

"In the case of children we would not disclose information about them in the absence of their consent if they have capacity to provide this,"

So? Does he have the capacity or not? Was his consent sought? If so, why, when it has not previously been needed?

"regardless of how old they are, or if the disclosure of that information may go against their best interests."
Again, he's 10. And why would the disclosure of that information go against my son's interest?



I am beyond furious about this and I’m not willing to faff around with further drawn out complaint procedures. My son’s health is of immediate concern. So far, all I have is suggestions of:

• Community health council
• Local MP
• A call to the GMC?

What can I do, as quickly as possible, without having to spend shedloads on a solicitor letter?

OR is there someone here who can draft a strong letter? Or what should I expect to pay to have a short letter written by a solicitor?

I need to move hard and fast on this. I’m not mucking about here.

Thanks

[des8]

Your right to request your child's medical records derives from the Data protection Act 1998, but it does not guarantee the right to access those records.
The records belong to the child and if he is deemed to have capacity to understand that, his permission to release the data will be required.
This is not age limited in Wales (altho' in Scotland it is deemed to be at 12 years)

If you disagree with the refusal you can make a complaint to the Information Commissioners office, and if still not satisfied you may complain to the Public Services Ombudsman. Not a quick speedy resolution service.
Your other alternative is to apply to the courts to have your request under the DPA upheld,(in which case I would suggest professional advice is sought)

[dazed]

The records belong to the child and if he is deemed to have capacity to understand that, his permission to release the data will be required.
This is not age limited in Wales (altho' in Scotland it is deemed to be at 12 years)

But that doesn't seem to tally with NHS guidelines:

https://www.nhs.uk/common-health-que...ealth-records/

Accessing children's records
A person with parental responsibility will usually be entitled to access the records of a child who is aged 12 or younger.
[...]
The same applies to a person appointed to make decisions about such matters by the Court of Protection in England and Wales.

[des8]

That NHS website refers to English practice (I know it says UK but that's the pobl o Loegr for you!)

NHS is devolved to the Senedd Cymru and Welsh advice is contained in this document https://senedd.wales/media/nkraidgk/...eb-english.pdf where it says:

"Parents or guardians (parents) are not guaranteed the right to access their child’s health records. Even if a child is too young to understand the implications of their rights to access personal data, data about them is still their property and does not belong to anyone else.
Parents can apply for their child’s health records, but if the child is deemed mature enough to understand their rights, the child will need to provide permission for the data to be shared with their parents.
In general, children over the age of twelve are considered mature enough to understand their rights, and will need to give permission. However this age is not an established legal standard in England and Wales, as it is in Scotland, and each child’s capacity will be assessed on an individual basis"

[dazed]

Parents can apply for their child’s health records, but if the child is deemed mature enough to understand their rights, the child will need to provide permission for the data to be shared with their parents.

Thanks. But again,

"In the case of children we would not disclose information about them in the absence of their consent if they have capacity to provide this,"

So does my son have the capacity or not? Was his consent sought? If so, why, when it has not previously been needed?

That's the bit that's getting me. As it happens, I've just had the first callback; this one was from the local health advocacy board who are going to speak to "various people" as a priority, today, and try and get some answers for me. The person who spoke to me said they are not aware of ANY complete refusal, without explanation, particularly where PR remains unchanged and where access has previously been granted without issue.

I've also got a retired GP from the same surgery on board to "see what can be done" (as far as he can within the law).

EDIT: They've just got back to me again saying that the advocacy team can't help because their supervisor told them that "the father is not considered next of kin". She was as surprised as I was, especially since we had already established I am named on the birth certificate with full PR. I said "are you sure that's right?" and she replied "that's what she said, but I have to say I've never heard of that either". But she gave me the contact details of the "next level up" and all the right names to speak to.

The plot thickens.

[des8]

Sorry I can't answer your question about your son's capacity, all I can do is try and point out the law and possibly ways forward.

I'm surprised an advocacy team accepting "the father is not considered next of kin".
In common parlance the phrase is taken to mean closest blood relative, and you can't get closer than mother/father to offspring.
In the UK, there is no specific legal definition of ‘next-of-kin’ so it was a bit of a meaningless statement.

[dazed]

Sorry I can't answer your question about your son's capacity, all I can do is try and point out the law and possibly ways forward.

I'm surprised an advocacy team accepting "the father is not considered next of kin".
In common parlance the phrase is taken to mean closest blood relative, and you can't get closer than mother/father to offspring.
In the UK, there is no specific legal definition of ‘next-of-kin’ so it was a bit of a meaningless statement.

Thank you. And it gets even stranger.

Bear in mind that the "advocacy team" were very quick to respond initially, very helpful on the phone, very understanding, and sent me all the forms out.
As per previous message above, they called back half an hour later with the "can't help because fathers aren't next of kin".

So, this happened since then:

Me to supervisor:

I received a call to say that that the advocacy team cannot help because "the mother is considered next of kin".
So, does that mean that a father, named on the birth certificate and with full PR, is NOT considered next of kin?
I would very much appreciate urgent clarity on where this guidance is taken from, and a link to the paragraph or document so that I can refer to it myself and in other notes.

Supervisor's reply:

Due to confidentiality it would have to be determined if your ex- partner is documented as next of Kin, the individual circumstances why she is and if she gives/does not give her permission to share information with you.

Me (morning of 14th)

I have not heard it mentioned before in relation to access to the medical records of a child under 12. This is not a request for her information or anything about her; this is in relation to my son's health, welfare and wellbeing. So, when taking this forward, I do please need some clear guidance and clarification on where this "next of kin" policy has come from, as I am not aware of, nor is anyone else I have spoken to.

Me (afternoon of 14th)

I really would appreciate more info on this "next of kin" rule, because no-one has heard of it until now, and we cannot find anything in relation to it.

Me (afternoon of 15th having left a phone message in the morning which was not returned)

Sorry to have to ask again, but I would very much appreciate your response regarding the information previously given to me as to why you could not initially assist me due to fathers "not being next of kin".

No reply.

I know I'm pushing this quite fast, but something stinks here. The way they were initially incredibly helpful, could definitely help me, and then 30 minutes after I give my details, they call back and shut down faster than a ... thing shutting down really fast. And then clam up.

I know 2 retired doctors and a couple of people who have been involved in the NHS legally, and none of them have ever heard of this rule.

Am I going to need to pay a solicitor to get involved, or this there some other organisation that could assist?

[des8]

Sorry but I have no further suggestions regarding suitable organisations

Just a warning that a solicitor's letter will probably be no quicker or satisfactory.
Firstly a solicitor has no more authority than yourself, but perhaps a bit more gravitas.
Secondly the advocacy people and any other organisation he writes to will refer the letter to their legal team, who will sit on it for a couple of weeks.
Then will begin letter tennis..........

Sorry if I'm sounding cynical but been there

You might want to consider applying for a court injunction ordering the release of the records.

[dazed]

Thank you. So frustrating. It's the delays that are unbelievable. For example, I have just had a response from the legal ombudsman regarding a solicitor I complained about in December warning me that...

at the date of this letter, our investigators are assessing cases similar to this one that were accepted in April 2020. To ensure fairness to everyone during this period, we are dealing with complaints in the order they are received.

We appreciate that the time it will take us to assess this case is not ideal, but we want to assure you that we are working hard to reduce the wait time by looking at new ways of working. However, it will take some time before we start to see the benefit of this. In the meantime, we would like to thank you for your patience. You do not need to contact us further at this stage. Instead we will provide you with an update in approximately three months’ time.

So it could take maybe two years...

It just all feels a bit hopeless some times....

[dazed]

So, we are no in October.
the Health Teaching Board's complaints services pointed me to The Health Services Ombudsman. They replied saying "not our area, you need the ICO".
So I emailed the ICO, they replied saying:

We have considered the information available in relation to this complaint and we are of the view that XXXXX Medical Practice’s has not complied with their data protection obligations.
This is because on 20 April, the organisation did not provide you with an appropriate response to your SAR.
If an organisation refuses to comply with a request, they must inform the individual of:
• the reasons why;
• their right to make a complaint to the ICO or another supervisory authority; and
• their ability to seek to enforce this right through the courts.

However, we do consider that on 11 June, the Practice did provide you with an appropriate response to your SAR.
We should make you aware that if an organisation refuses access to information, the ICO does not have the power to order information is released to you. Only a court may do this.
We will now write to the Practice to advise them of our outcome decision.

But hang on - this is the Practice's full and final response:

We are sorry that you are unhappy with the decision to not comply with your request for information about you son. We accept that you have parental responsibility and have a right to request information about your son, but that does not equate to a right to be given information, as regardless of his age that information relates to him, and his interests are paramount.

We can reassure you that we have considered both our professional obligations under GMC guidance, and the guidance that relates to disclosure of medical records under the Data protection Act, and also taken advice about our interpretation of the guidance. We have a duty of confidentiality to all patients.

In the case of children we would not disclose information about them in the absence of their consent if they have capacity to provide this, regardless of how old they are, or if the disclosure of that information may go against their best interests. Taking these factors into our account, it is our decision that it would not be appropriate to comply with your request, but unfortunately for confidentiality reasons we cannot provide more specific details for either our initial decision, or this review of the decision.

No-where in that letter does it give:

• the reasons why
• their right to make a complaint to the ICO or another supervisory authority; and
• their ability to seek to enforce this right through the courts.

So I phoned the ICO, and they agreed that it didn't, but basically said it wouldn't make any difference because they still can't force the practice to release the information!

And, the letter from the Surgery says: "In the case of children we would not disclose information about them in the absence of their consent if they have capacity to provide this,"

So does my son have the capacity or not? Was his consent sought? How do they know what his response would be if it wasn't?

What I find even more confusing is that I know two "blended" families - in both cases, they say that they have had no problems discussing the welfare of the child of their partner, even though they do NOT have parental responsibility.

If the surgery have been told something about me which is causing them to make this decision, do I not have the right to know what it is?

[des8]

Possibly a SAR to the practice for information they hold about yourself, including reports or comments from third parties?