Does anyone know about the Data Protection Act?

[MotherJack]

Spin off from a previous thread - I'm trying to access my childs medical records (well, one letter in particular) and have been refused and have been advised to get it using the Data Protection Act. I've skimmed the Act and am not sure what I am entitled to actually get under that. Is it just a record of documents or am I allowed copies?

Does anyone know?

Thanks

If they are NHS records, and assuming your child is still a minor and you are the guardian, you should be entitled to access to the records. How old is the letter you're after? The only reason you can be refused is if the consultant responsible for the content of the letter believes the content would be of harm to the patient or if it contains information provided by a third party.

Does this help at all? It seems you need to make a subject access request.

You have a right to see your medical records under the data protection act.

There are instances when they can refuse for example if healthcare professionals believe that information in the records would be likely to cause serious harm to the patient or to another person. Sometimesyou get them and partshave been censored.

Have you written to he medical records department at the hospital or to your GP depending on which records you want. You are entitled by law to get a repsonse to a written requerst within 40 days. You will probably need to ID yourself. You can either ask for copies (but they can charge up to a max of £50 I think), or you can make an appointment to view them.

Did they give a reason for refusing? I have my dd's records- it did take some time to get them - you have to be persistent.

You can approach the ICO if you think that the hospital/GP has breached the Data Protection Act.

subject access requests

I think most NHS trusts have data protection officers that you can address the subject access request to.

The letter was from the end of May. The reason for my doctor refusing was because my son's neurosurgeon has refused to give them on the basis I might be frightened by the terminology .

I realise it is an extremely technical letter and it will contain some awful things but I'm not daunted by much any more. I don't think it's a good reason to refuse. I looked at the reasons to refuse access to medical records and it said that access could be refused if access was likely to cause "serious" mental health problems. I don't think so!

So I can actually see them, Saggar, or get a copy?

Just going to look at that link now SF...

Thanks SF and Vive - was looking at parts of that site earlier. I've already got good dialogue with the practice going, and I'm sure they think they have my best interests at heart, but I want that letter. The Practice manager left a message on my phone earlier today saying they weren't going to give it me so I had no chance to talk to her - I will draft a letter tonight to put all of this stuff in writing...

Thanks everyone {smile]

That ain't a good enough reason TBH. It's a bit crap really isn't it? He should be explaining the terminology not refusing you access on the basis that you won't understand it or be frightened How are you best placed to be a good advocate for your son if you aren't fully informed. How can you give informed consent for any procedure?

I got copies of dd's because I wanted to take my time going through them ( I needed wine). I also get copies of clinic letters after outpatient appointments and reports of any tests now. It's good practice for the hospital to do that.

It is crap, Saggar. I understand why it was said - it's a neurosurgeon to neurosurgeon letter and it will contain some things that aren't pleasant reading (should I ever fully understand them!) None of it changes anything about my son's condition though.

To be fair to my doctor, she rang me and said she wanted to invite me in to discuss the contents of the letter so she could explain it to me, but after reading it she realised she didn't understand much of it.

My reasons for wanting it are just about feeling like I have some control. My previous understandings have been taken away and we are left hanging, waiting for a response to my neurosurgeon from the other neurosurgeon and I have been told very little about the questions he is asking... despite having written to ask for some explanation of some kind.

We will be told eventually - I just want to know what's happened in the meantime. I have been kept out the loop and it's not good enough. My doctor agreed but then won't provide the copy of the letter they have on file.

Incidentally, Saggar, can you insist all letters are copied to you? I did wonder about asking.

You are entitled to either see or have a copy of them. The reason you've outlined is not adequate for refusal. Have you asked the hospital or the GP practice?

I would stronlgy urge you to contact your local PALS or Patient Experience team at either the hopsital or PCT. They should be able to help sort this out for you.

Saggar's right, there was a 'copying clinic letters intiative' introduced across most hospitals some years ago whereby you should receive a copy of any clinical correspondence sent by hospital staff.

Yes, I agree - Pals are brilliant. I had cause to ring them before and within 2 hours my son had a hospital bed arranged. It's a really great initiative that one.

MotherJack - yes I would ask to be copied in on the letters. I understand the control thing, absolutely. I have always needed to know everything about dd's condition, it's a coping mechanism.

Isn't it just [empathatic smile]

Ok..... just drafted my letter - any comments gratefully appreciated

Many thanks for your telephone message earlier today stating that you are unable to provide the requested letter as it came from another party and that the other party are not happy to provide the letter to me. You stated that, as such, you do not feel it is your data you do not feel you can undermine their wishes. I am dealing with this separately as I believe they are contravening the Access to Health Records Act 1990 and also the 1998 Data Protection Act.
However, in refusing access to the records you hold I believe you are doing the same. The file you hold forms XXXX?s Health Records with yourselves and I can see no reason under the provisions of the Access to Health Records Act or the Data Protection Act (under which you are the managers of the data) to allow you to withhold the requested letter from me.
Therefore I am asking again for you to provide the requested letter to me under both the provisions of the Access to Health Records Act and also under Section 7(1) of the Data Protection Act.
I really do understand the Practices reticence in this case but I believe you are not acting dutifully or lawfully in withholding the requested information.

The DPA is the bane of my life! I sympathise with your predicament, as has been said this doesnt seem like an instance where the records shouldnt be released to you.

Have just tweaked your letter slightly:

Thank you for your telephone message left earlier today stating that you are unable to provide the requested letter as it came from another party, who does not agree that I should have sight of the same. You advised that in view of their stance, and as you do not consider this document to be 'your' data, you feel unable to release the document to me.

I am dealing with the other party's comment as a separate issue as I believe this contravenes the terms of the Access to Health Records Act 1990 and also the 1998 Data Protection Act.

However, in refusing access to the records you hold I believe you are also in breach of the Act. The file you hold forms XXXX?s Health Records with yourselves and I am unaware of any valid reason under the provisions of either the Access to Health Records Act or the Data Protection Act (under which you are deemed to be the managers of the data) to allow you to withhold the requested letter from me.

I therefore repeat my request for sight of the aforementioned letter in accordance with the provisions of the Acts detailed above specifically Section 7(1) of the Data Protection Act.

I consider that you are obliged by law to provide disclosure upon my request, and trust that your position can now be fully reviewed, and the requested information provided without undue delay.

Thanks hatesponge. Much appreciated.... amending now!

Correct me if I'm wrong (and I may well be) but does the DP act not just apply to records on computer? Do you know that this is a word processed letter rather than a hand-written one? I'm guessing it is, but it might be worth checking beforehand.

Good luck

DPA applies to both paper and computer records.

Good luck with the letter MotherJack.