Aibu complain? Dd medical notes (poss triggering)

[padwalk]

I’ll try and cut a long story short, but I’m feeling really emotional over this so Im not sure if my judgement is clouded.

Dd (15) has applied for the army, but there was a mix up with her medical records and somebody else’s, and her medical fitness was failed. So to prepare for the appeal we’re doing, we needed to request all of dds medical notes from our GP. I was told because dd is over the age of 12, she had to request and sign for them herself and physically hand them over to her, they couldn’t even speak to me on the phone for confidentiality, fair enough I thought.

Dd has been off all day, really upset, then she completely broke down tonight and it turns out it’s because of something she saw in her records.
She had been reffered to camhs many years ago, because I asked them to look at her because of my own mental health issues and I was worried about the affect on her. She knows about this, I’ve always been as honest as I can about it. She went twice and they weren’t concerned enough to take it any further.
The referral letter was from my psychologist at the time (one who i horribly clashed with and wished I’d put in a complaint about at the time for a different reason) and there in black and white was a complete list of all my issues, from severe trauma in my own childhood, to being sectioned when I was pregnant with my second child and all about me being suicidal, including the psychologists own opinion on why I was that way. There was much more but I don’t want to derail the thread too much. I’m so angry that all of this was literally handed to my 15 year old to read, and she now knows that her mother tried to kill herself.

Is this even legal for them to do? Do I complain to the gp, the psychology service? Aibu to take it further, or we’re they completely in their rights to do this?

I didn’t think I’d be sitting tonight comforting my dd, who’s petrified about what she read.

Thank you again everyone.

I didn’t want to lie to dd about it. We had a long chat this evening and I was honest with her, I said it was nothing I ever wanted her to really know about, but that yes, it happened and I don’t want to be ashamed of it. She was great, very upset but she was glad I spoke to her about it, I just wish that I never had to.

I’m going to try and get some sleep (!) even though I’m still shaking. I’ll let you all know what’s said tomorrow when I call the GP practise.

Honestly, thank you very much to everyone for such great advice and resources to use.

It may not be something you understood but you wanted a referral and that generally involves sharing the reasons the referral is necessary. Realistically, it was unlikely to simply say mother wants someone for daughter to talk to, was it?

Imagine a daughter wants a referral for gene testing for breast cancer - the letter is very likely to say that the mother was diagnosed with stage 3 ductal breast cancer in 2005, treated with mastectomy and chemotherapy but was ER and HR -ve. Mother alive and well. That letter is going to be in the daughters file and will contain the information the patient (or in your case parent) has shared. You told the psychologist voluntarily and they shared it professionally to secure an assessment for your daughter. You didn’t assumedly say I want my daughter referred but the reasons are secret? It hasn’t been shared outside the professional arena except with the person whose records they are. Unfortunately your details form part of your child’s medical history.

Yes impact on a career in the military is entirely possible if there has been a diagnosis on grounds of mental health just as having been prescribed an inhaler when over 5 years of age is.

Cherry whilst information relating to third parties may form part of a patient's medical records, such as in the breast cancer scenario you describe, this information should be redacted before disclosure to the patient.

See for example para 4.9 of this BMA guidance www.bma.org.uk/-/media/files/pdfs/practical%20advice%20at%20work/ethics/accesstohealthrecords_aug2014.pdf This advice predates GDPR so I imagine the rules are even stricter now.

This has clearly been very distressing for the OP and her daughter, maybe a little sensitivity?

Yes, I would be calling the surgery first thing in the morning and speaking to the Practice Manager to arrange an appointment at a suitable time for you tomorrow to discuss "a complaint regarding a serious GDPR breach from your surgery". YADNBU, I'd be furious and terrified, in equal measure.

Most importantly, you need to focus on your DD and how she's feeling.

I was 15 when my Mum had what the Doctors told me was called a nervous breakdown and first tried to kill herself (to me, it felt entirely 'out of the blue' - but then I was 15 and wasn't particularly interested in anything apart from my friends and boyfriend). It was a huge shock and she ended up spending over a year in a secure psychiatric unit - where she attempted to kill herself on at least 3 more occasions. So, I faced a similar revelation about my own Mum's mental health at the same age as your own DD, and these are a few things I think would have helped me at the time. You'll know which (if any) may be suitable for your DD. I also have 2 DDs myself (aged 9 & 11) and have explained my Mum's Bi-Polar disorder to them and continue to talk about it and answer questions when they have them.

I wish someone had a conversation with me, and using basic, straightforward, unambiguous language, explained what a 'nervous breakdown', or a 'mental health issue' was - it was years before I understood that it didn't mean that she was 'mad' (as in bonkers, a total fruit loop) and that she hadn't been merrily going about her life when suddenly, it felt like 'her own internal engine' had broken down and she simply couldn't keep going.

I would encourage your DD to ask questions. I would be telling her that she could ask anything she felt she wanted/needed to, and I would reassure her that I would be honest with her - and then I'd be honest with her.

I would reassure her about how your mental health is these days. It sounds, from your OP that you went through a horrible time, but that your mental health is now under control and that you sought help and continue to use the services that are available to you (you mentioned seeing a psychologist - does this still happen?) Talk to her about medication you take and how it affects you. Find a common language you can both use to discuss how you are feeling now compared to how you felt back when you were really poorly e.g. I was feeling about 2/10 on the happiness scale in summer 2014 (or whenever it was), compared to the day you were born which was 10/10, a normal, dull day at work would rate a 6/10, then the day I lost my purse, my car got broken into and I was sacked from my job was 3/10, but on the way home I bought a scratch card and won £100,000 so it ended up a 9/10! This gives you both an easy way to communicate about your mental health (tell her she's welcome to ask "How are you doing out of 10 today?" whenever she likes), you can ask her too, which will help you to keep an eye on how this is all affecting her. It will help her to be able to get that quick burst of reassurance from you that she will need, without having to get into a looooong, deep and meaningful conversation every time.

Reassurance is really important and she’s going to need lots of it. In my experience, my main concern was that my Mum was going to try and kill herself again and that next time, she would succeed. As difficult as it might be for you to talk about that time, your DD will need to hear how differently you feel now in comparison with how you felt when you tried to take your own life (and therefore, logic dictates how much less likely you are to attempt suicide now). She needs to hear from you that you are not feeling suicidal any more, and that you are aware of the signs that you are going downhill and that you have things in place (a CPN, your Psychologist, contact numbers for emergency mental health services etc.?) which you can access quickly and easily, as soon as you recognise them. Talk to your daughter about these signs so that she can learn to recognise them in you herself, which will help her to feel that she has a small way in which she can contribute to keeping you well and it gives her a sense of control, which she will be lacking in this situation, which will, in turn, help her to feel better. Make a list of the contact details for the services you use (be sure to include ‘numbers to call in a mental health emergency’), stick it on your fridge/ notice board, let her know where it is, and what to do if X happens, if y happens etc.

Be honest with your daughter. She will be feeling confused because part of her will probably be angry with you (I remember thinking “Cheers then Mum, I’m not good enough to want to stick around for” and “Thanks for thinking of how shitty and hard my life would be if you’d killed yourself, you’re so selfish!”), she may have lost some trust in you too (I felt scared around my Mum for years - for example, if she was driving me, I would worry that she’d suddenly swerve into oncoming traffic to try to kill herself and I’d die too) and your DD now has ‘proof’ that her Mum isn’t always truthful (I found it hard to marry my hard working, confident Mum from before she got ill with the frail, zombie-like woman, who appeared to have aged 15 years almost overnight and who spent her days sneaking around the house, ‘popping to the shops for milk’ but actually buying lengths of hosepipe and duct tape, along with pack after pack of paracetamol, finding excuses to use Dad’s car as his key-ring had the key to the locked bathroom medicine cabinet on it and planning how to kill herself). I’m sure it’s really hard to talk about when you were so unwell, particularly with your own DD, but if you lie at this stage, then that trust will only break down further. You only have one chance to give her this information for the first time and if you lie to her now and she finds out later, it may have devastating consequences for your relationship with your DD. There may well be things (particular details of exactly how or where you were planning to commit suicide for example), which you may not want to share, or you may feel that she’s not mature enough to handle that level of detail yet. It’s completely fine not to share these details if you prefer, but do be honest with her about it; it’s better to hear “I’m sorry sweetheart, but I’m not ready to talk about that yet/ I’d really rather not share that bit with you, as I am ashamed about x, y and z” than for you to lie to her, and for her to find out the truth 6 months/ 10 years down the line. She may not feel able to forgive you for lying in relation to such a life-altering event (for both of you).

Your DD may become slightly overprotective towards you or she may go in completely the opposite direction and start to behave a little ‘immaturely’ and appear to want to be protected by you. You may even get a little of each! She will be confused by these feelings (I’m sure it’s pretty obvious to you why she might be feeling this way), so I’d give her exactly what she needs in terms of spending as much time as she wants with you (insofar as you are able) and giving her as much physical contact as she needs.

So, the basic ‘headlines’ from the ma-hoo-sive essay I appear to have written (sorry OP, and well done if you’ve read this far!):

Tell her ‘your story’
Encourage her to ask questions - It’s OK if you don’t want to answer all of them, but be truthful
Reassure, reassure, reassure!
Always be honest
Find a way to ‘check in’ with how the other is feeling
Give her some ‘control’ by letting your DD help you
Loads of contact, time and psychical

I’m so sorry that this has been such a jarring, unsettling experience for you both. You sound like a lovely Mum who really cares about her daughter, so I hope very much that one or two of the things I’ve said might help a little. Fingers crossed that everything seems a little brighter in the morning – I always like ‘This too shall pass’. Give them hell at the surgery, wishing you the very best of luck in dealing with that bunch of incompetent numpties!

I think it's a horrible situation for OP and her daughter.

But I see where Cherry is coming from. The information was about a 3rd party but it also formed the basis for a referral and (I think from reading the OP's post) the reason her DD was seen by CAMHS. So that information would have been relevant (at least in part) to the assessment done by CAMHS- in the event that it was a letter mentioning OPs problem's in the context of the assessment of her daughter then it may not automatically be redacted.

So whilst I suspect more information than was necessary was released, if the information was mentioned in the clinic letter produced by CAMHS about the OPs DD, then it would not automatically be redacted. So if, for example, OPs mental health had been impacting on her DD and this was mentioned in the clinic letter then it would not automatically be redacted. I have actually had to contact relevant authorities for advice about a vaguely similar issue (though had more of a child protection element) and was informed that if it was directly relevant and causal (i.e. the information about the 3rd party was directly and inextricably linked to the patient's problem and this was mentioned as part of the clinical formulation) then it could be released without the 3rd party permission. It is not always as straightforward as it can seem.

In the case I was advised (legally and by information officer) as the information directly and causally related to the medical problem the patient suffered from and without that information the basis for the diagnosis and treatment of the patient did not make sense, that the information could be released.

So, for example, child is referred to CAMHS due to parental concern re mental health- parent discloses that they have been suffering from depression/anxiety/alcoholism and this has altered their behaviour at home/how they parent their child and they feel this may potentially impacting on their child and be cause of anxiety/low mood etc that their child is suffering from (I know slightly different from OPs scenario)- and this was mentioned in the referral or clinic letter which forms part of the child's record. It would not automatically be redacted as it forms a fundamental part of the assessment of the child. If there was a copy of a letter relating entirely to the parent for background info, that should not have been released.

There definitely has been a breach with regards to the incorrect patient records being sent instead of your daughters.

With regards to the CAHMS referral, the referral letter would need to include why your daughter was being sent for assessment I.e your own mental health issues & history.

It definitely will have made brutal reading for you both & that's due to information in medical notes needing to be clinical, factual etc so can be harrowing in situations like this. The referral letters were requested so have been included & wouldn't have been redacted in this case.

I can't comment on what the army would or wouldn't do decision wise re the information. However, as distressing as it's been for you both, DD now knows about it & I think it's a real opportunity for you both to talk & for DD to gain some real insight into mental health. That's something she will benefit from in the army both personally & professionally. Should the army question things, what a superb opportunity for DD to turn that negative into a real positive & tell them how it's helped her understanding & perception of MH issues. Obviously it all needs a few days to calm down but a lot of good can come from DD knowing & you being able to share it. That's resilience 😊

The breach needs to be dealt with & NHS England deal with G.P complaints. They will ask the practice to investigate & respond to them. As you've already made the practice aware, & haven't commented that they are dealing with this aspect, NHS England need to deal.

Good luck!

That's really appalling OP

Often practices are well enough able to deal with complaints themselves. If the practice addresses the issue then what good will come of fining them and making them go through an investigation?

If the practice was capable of dealing with its Data Protection duties itself, this incident wouldn't have happened. There needs to be a proper investigation by a third party to ensure that there is no possibility of repetition.

jacks11, it doesn't matter whether the information would be "automatically" redacted. The point is that it has to be redacted, whether automatically or otherwise, unless the practice had OP's express permission for her information to be shared - which they didn't.

CherryPavlova
You don't have a clue what you are talking about
I can request from school/GP any information they hold about my child. Any third party information must be removed
So, for example, if in DDs medical notes it contains information about other family members this must be removed because it is their information not hers

Tough times, and not something you planned to deal with. But here you are, working through it, giving dd all support you can. You will both come out stronger. That does not mean it was Ok- it absolutely wasn’t

Ask for the DPO's name, this a perfect example of a data breach under GDPR.

15 year old is upset at reading about horrible things that her mother has been through, including that she’s been suicidal, and one poster’s first response is ‘well maybe she isn’t cut out for the army’!!! I think there are senior army officials who would be upset to hear that information about their loved ones, such a ridiculous comment! Really hope you get some answers OP, it sounds like you and your DD have a great relationship and you’ll both get through this x

Was it them who sent the wrong information to the recruitment people in the first place? I wonder if that girl - the one whose records were sent erroneously knows about that data breach?

They sound like a problematic practice.

I do hope this is sorted soon and you continue on your road to recovery. You must feel very proud of your lovely daughter. She sounds so mature.

That is one of the worst data fails. Complain to everyone. GP practice, health authority, data commissioner and your mp. Just had legislation to prevent this kind of thing happening and they are obviously not compliant. Utterly disgraceful. Hope you will both be ok.

I see Cherry's point. In my experience patient notes are full of detailed family history and obviously genetics and family history provide very relevant information to clinicians. This stuff definitely gets repeated on referral letters and sometimes doctors request notes of family members who have had something similar.

I'm guessing we need to work these issues out. Maybe an information sharing consent form although in a lot of cases this information comes verbally from the patient.

Whatever the circumstances, Patient A has received sensitive information about Patient B and that should not have happened.

www.gov.uk/data-protection

Personally I would call, say there has been a serious and damaging sensitive data breach, and ask for a call back from the manager. But also put it in writing, and tell the manager you are going to put it in writing.

www.england.nhs.uk/contact-us/complaint/

As PP said, they very likely just have grabbed the notes and handed them over without looking at them first, they probably have no idea this has happened and a decent surgery will be grateful to you for making sure they are aware and that it doesn't happen to anyone else.

"They can write whatever they feel is relevant in a child's notes regarding parental history, but it doesn't mean your daughter should see it. "

If I request my medical notes, I want to see everything written in them though so I'd want every part handed over.

"The reason there's often a fee to release notes is because of the time and input needed to redact stuff like this. "

I was under the impression you can't charge a fee under GDPR.

OP, please dont let the surgery just brush this under the carpet, their record keeping sounds extremely dubious and they need a reminder from the data commissioner that this is not remotely acceptable. Many family members have medical info they don't want shared with others, let alone, as with your daughters original application, total strangers.

If I request my medical notes, I want to see everything written in them though so I'd want every part handed over.

You might want too but you can't. If third party medical info is involved; it will be redacted unless permission is sought to show it. Essentially, your right to want your information does not override someone else's right not to have theirs revealed.

I hope you’re daughter got a decent nights rest, and is feeling up to things today. She should never have had to read all that. I’m so sorry for you. Good luck today with the GP practice.

Cherry is correct in what she says re the medical records & a redaction would only take place if the patient or her mother had expressed a wish for the information not to be shared.

Same applies here.

OP you need to make it clear, in writing to the GP you don't want the info on the referral letter shared to 3rd parties.

Good luck today OP. Make sure they know that this is an official complaint which needs proper investigation. Don't let them just apologise and 'make sure it doesn't happen again'.
I hope your DD is feeling calmer today, and that you were able to reassure her. It must have been a horrifying moment for you both.

a redaction would only take place if the patient or her mother had expressed a wish for the information not to be shared.

That relies on them knowing the information is there in the first place.