Is this a breach of my medical confidentiality?

[WellThisIsShit]

Just opened a letter from a consultant rheumatologist and it recounts details of a call to my gp, which is all well and good, I asked her to call or write as GP practice weren’t understanding how difficult it is for me to get appointments - I’m disabled and mobility is tricky.

However it also says in this letter that the gp told the rheum about a mental health assessment (a while ago), and she actually gave what she’s called ‘a possible diagnosis of...’?!?!? Now, this diagnosis was never formalized and in fact I felt was extremely wrong and followed an awful appointment which was highly unprofessional. I’d been back to the gp about this one appointment at the time, although was a different gp from now, and he’d agreed with me I shouldn’t take it further as I had found it very triggering and also was pretty unprofessional. I decided not to make an official complaint as I didn’t want to engage further with it.

I was really shocked to see this upsetting experience hauled up again and in an unrelated context.

Is this an ok sharing of my confidential medical information? As I certainly didn’t give permission to share this? And then to share this in a medical letter which then anyone in the trust can access?

I’m really shocked by this as no diagnosis was agreed and I dropped it without knowing I needed to complain to get it off my records???

This is a difficult one!

There is a presumption (which I think is reasonable but others might disagree) that people within the NHS share information with each other about patients' medical history, drugs, etc. It's possible that your GP mentioned the mental health assessment in their letter to the rheumatologist if they thought it was relevant to the referral. However, it's more likely that they just included a print out of your GP record summary, which would have showed referrals to specialists amongst other things.

I'd write to your GP and ask that details of this consultation are not shared with third parties (including others working within the NHS) without your express permission in future. You probably won't be successful in getting it struck from your record altogether (unless there are facts recorded that are demonstrably false) but you can certainly limit where the information is sent.

The most likely outcome is that they will include a note on your file so that the summary print out isn't just sent reflexively in future.

Don't they usually mention any major health incidents which they think might be relevant or could help your cause.

If the doctor who wrote the letter is new since the incident you refer to then he or she might just not have been familiar enough with the case?

Did you sign the disclaimer permitting your medical information to be shared within the trust? I did as it makes it easier for them to access information from various sources. Would the suggested diagnosis be somehow relevant in the GPs view? For what it's worth I have seen a psychiatric report about me and one would be forgiven for thinking they are dealing with a psychopath when they read it. Doctors don't hold back among themselves, though they filter what they tell patients in my experience.

Thanks John, would they be able to take it off my summary record but leave it in the main notes?

It does sound like it could be on a list of appointments etc.

The rheum also wrote after mentioning this ‘potential diagnosis’ that the gp mentioned a report and in the rheum’s letter she had asked for a copy of ‘the report’. Which is surely over reaching? Not sure even which she would have asked for as there’s been a more recent one since, as a re-referral a year after (when I got some courage back), which has a different, & more accurate, focus. Still not much relevance for this rheumatologist though?

The gp at the time understood why I found this particular my appointment so awful (very triggering, shockingly so, left me feeling utterly broken for weeks after, ironic considering I was trying to improve my mental health). And there was no letter after specifying a diagnosis - at least not that I got?

It was a horrible experience and I have shared it with other people, including a counsellor, who were shocked at the way the appointment had gone. I considered complaining but was too scared of this doctor, rightly or wrongly I was scared to pursue it, and felt there was no point either. Really it’s because I was scared of rousing his aggression, because I’d found his aggression within the appointment (when he had no reason to get aggressive) utterly overwhelming. What the hell would he be like when roused? And after all, it was just me and him in the appointment, so as I said, no point in complaining.

So, if it was any other appointment, diagnosis or report, I wouldn’t be reacting like this. I probably wouldn’t be reacting at all.

Crossed posts :)

On reflection, looking at dates, the discussion would have happened with a gp who had no relationship with me at all, although since then she’s become my ‘go to’ gp.

One reason I was so upset to read this letter is because I had discussed this upsetting appointment with this gp, and I felt really shocked and betrayed that she would then just parrot this man’s words.

But that didn’t happen, looking at the dates. The gp spoke to the rheum in the summer, and only a few weeks after took over as my main gp. And after having spoken to me properly said that the gp practice seemed to have not realised how much my condition had deteriorated (physical disability) and has been great at helping catch up on a lot of things that weren’t being done as I couldn’t get to the gp.

And one of the things this gp is catching up on is the difficulty I’m having in accessing mental health support, because of this horrible appointment. And what happened after (this person who decided I had ‘x diagnosis’ also then blocked another referral when I had enough courage to try again... he wrote a note on the end of this second assessment that I MUST attend appointments with him if I was to access any mental health support. So I dropped it. Being fucking terrified of him and having no faith in any professionalism he’s supposed to have.

So, I discussed what to do about this, and the gp said she’d write another referral and would be happy to say that I needed to see someone else, because there was no chance of a positive therapeutic relationship being built.

So, it feels like I’ve just been sucker punched with this letter and the discussion and info passed between them.

I’m trying to remember that my experiences aren’t in date order!

"Would they be able to take it off my summary record but leave it in the main notes?"

They probably could but might be resistant to modifying the notes too much. I'd write to withdraw your consent to them sharing this piece of information and ask how they plan to ensure that it doesn't get passed on in future.

It depends a bit on what software they use to manage their records. There might even just be a button that suppresses an entry from appearing on the summary record.

Do you feel this information will negatively impact on your treatment with the rheumatologist? How did you become aware that the information had been shared?

I am guessing they need to tell the rheumatologist about other meds you are taking in case of interaction so they have a duty of care.
The rheumatologist cannot then just chat about it with others.
Plus 'potential' means it certainly isn't confirmed.
Sorry you are having a rough time.

I’m not on any medications for mental health stuff, am on a ton for physical health though.

No one has ever even recommended I go on anything more than maybe trying a low dose of antidepressants. Which I’ve decided not to and no hpc has ever questioned my decision, as I’m already overloaded by medications and have had strong side effects in the past so need to be very careful with adding, subtracting medications.

And I’ve always been very open about me feeling low / upset / anxious etc, and my efforts to get myself in as good a shape as I can whilst having had an absolutely hideous few years (& a shit upbringing that left me more vulnerable to it all).

I do see a counselor now, who was very lovely about my awful psych experience when it happened. She doesn’t agree with this one persons potential diagnosis (thank god).

I can’t see how the diagnosis or it’s report is relevant to my treatment by a rheumatologist, and the way it’s written up doesn’t show any relevance either... except to cast doubt on my functioning in a rather shocking way.

Which is why I’m reacting so much. It feels rather like the only thing mentioning this diagnosis would effect is my own credibility.

It would open the way to me being ignored and my physical illnesses being written off as ‘all in my head’. Which seems to be what that delightful man had decided in that one appointment, and was one of the reasons it became very unhelpful.

Thank goodness I got a revised diagnosis based on genetics, before this diagnosis makes its way across all my hospital records (which is what I’d like to stop happening).

Im finding it triggering as I’ve battled for many years to have my physical condition taken seriously... like so many others with rare or invisible illnesses. I was told it wasn’t ‘real’ for a long time, and so was my sister before me. I now have a ‘better’ diagnosis than the more general one I’ve been living with for the past few years. This new diagnosis at least moves me out of the realms of me exaggerating / making it up/ not trying hard enough / not managing it well enough etc etc etc.

So, it’s kind of a sensitive spot. I feel undermining my credibility could still make medical interactions really difficult when I’m too ill to have enough drive to fight my way through it.

It’s very scary, particularly for my own circumstances, as my sister died of the same illness I have, and she was repeatedly told throughout her painful, undiagnosed and untreated life that it was ‘all in her head’ or she was causing symptoms because of her anxiety. For example, the week she died she went to the GP with recognizable symptoms of her cause of death. They turned her away and told her she had nothing wrong with her except anxiety. She died terrified, alone and with no medical help. That didn’t happen over night. That was years of slowly eroding her credibility and labeling her before she’d even walked through the door.

So when I see something written that lays the groundwork for me to be discredited and ignored... It feels incredibly dangerous to me, and I do not want to repeat my sisters fate.

Do you have a autoimmune disease? Because I had the same issues for years- with my symptoms being dismissed as 'psychosomatic' and told they were all down to depression.

It was only when I saw a different GP that he looked beyond this and asked for the proper tests. I was then diagnosed with RA and systemic scleroderma.
My consultant was very used to this pattern of events, and obviously chronic illness can cause depression in itself. And I am now on fluoxetine for raynau'ds anyway- and it has helped my mood.

I can see why you're upset. Hopefully the consultant will be experienced enough in the field to know it's not all in your head.

I missed the GP calling earlier, ffs!

I’m wavering between being sure this can be rectified as it’s so clearly not right... and panicking like hell.

If I can’t get this potential diagnosis off my records, do you think if I went private and hopefully would get a different diagnosis, that would sort of override this earlier one?

I realise that’s a bit of a big thing to do, but I really am terrified about everything becoming screwed by this incorrect and stigmatizing label... it’s apparently is a known issue, with women being labelled unfairly with this label rather than being identified as suffering the effects of complex trauma.

Sigh.

I have to go be a host now and o just want to hide and stare into space / at crap tv

Jessica, not autoimmune but in that same ballpark of conditions, so very comparable situation. CFS is another comparable one.

I hope and pray that in decades to come, we look back on the way we treat people with invisible, systemic diseases with shame... like the way we look back in horror at the way society treated women with ‘hysteria’ and ‘wandering wombs’, conveniently sticking them in mad houses for anything from not giving over their inheritances to getting pregnant out of wedlock.

I don’t want to have to fight to be taken seriously, tbh I’m too tired to carry on.

Just read last line I wrote & feel the need to clarify...

“tbh I’m too tired to carry on.... on fighting”

These are not my final words or anything :)

Please don't worry too much. The consultant will be used to the notion of the 'all in their heads'. He probably gets stick for specialising in the 'imaginary' discipline himself/herself.

I had a visit with a consultant about a month ago and she was absolutely brilliant (don't wish to state the specialism). She was really on the ball wanting another specialism to up their game (the one associated with the old noggin ;) ). She offered to try to put pressure on them to bump me up the list as a priority as one issue feeds into the other. My medical problem can't solely be addressed by the medical speciality. An analogy would be a heart surgeon with an overweight patient working to speed up dietician referral if you get me.

Consultants are niche in their areas whereas GPs have a general knowledge of everything.

Don't panic and if you feel you're being fobbed off by consultant (I doubt this will happen), explain about your sister's experience and that you strongly refute the suggested diagnosis.

I’m still trying to work out how to address this mess... even just describing the issue is difficult! I hey really upset then I seem hysterical and generally shit!

I’m trying to summarise:

I was extremely concerned to receive a consultant letter which raises some serious issues that needs resolving and editing urgently.

The contents of the letter draws on a reference to an upsetting incident in the summer involving my son and a carer, which I had shared in the appointment. In the appointment I had explained what had happened briefly, in the context of how difficult things have been since the last appointment (12-18mths prior).

Within the letter, concerns about this incident had been juxtaposed with questions around my mental health, using inaccurate and incomplete information.

My concerns are that this section of the letter:

• Goes far beyond the specialism of the consultant
• Uses inaccurate and incomplete information
• And creates doubt in either my ability to look after my child due to this incident (which was fully investigated & resolved months ago by the proper authorities), or/and questioning my credibility, due to this old and disputed potential mental health diagnosis.

There may not be direct allegations , however the implications are clear and give rise to extremely serious doubts, which will be raised each and every time this letter is read.

The letter draws on a discussion with a gp at the practice I’m signed up to. This discussion took place with a GP who was not familiar with my case then, nor my current condition or any details of the incident with my son.

I did give permission for the consultant to speak or write to the GP practice about my difficulties in accessing GP care and management of my physical condition. This discussion went far beyond this topic, but doesn’t seem to have added clarity? This discussion seems to have led to the cherry picking/ focusing in on a potential mh diagnosis from some time ago which was never confirmed and came from an appointment that I’d found very difficult and unhelpful.

(For example, the physical issues I face everyday due to my physical condition, were minimised, ignored or misattributed). As a result I decided not to continue, with the agreement of a gp at the practice and also my counsellor at the time.

I am shocked that this has been shared in the call, and then used to build assumptions on, in the letter.

It also seems that the consultant has also asked the gp for the accompanying mental health report (again without my permission being sought). I would question what the motivation for this is, and whether its germaine to my treatment.

Moving on, I am shocked that these issues would be discussed within the context of a rheumatology appointment write up, containing such serious inferences, which are potentially damaging to my credibility and ability to access medical care in the future.

These notes can now be accessed across many hospitals and consultants within the trust, across which I have several appointments / clinics (as my condition is systemic).

This raises issues about patient confidentiality, and also my sons confidentiality as well.

Finally, I understand that child safeguarding is everyone’s duty, but the manner in which these concerns have been raised has not helped safe guard a child.

Sadly, it seems that neither the consultant nor the GP asked myself or the relevant services for more information and reassurance.

(I also note that if there was such a concern I’m also very surprised there hasn’t been an alert and investigation by children’s services, in the 3 months since the appointment).

Honestly. You're worrying too much. They write all sorts of crazy shit on forms. They have templates with Yes/No options. Is this person a danger to children? Yes/No. Yes. They don't qualify the statement! The consultant won't read it as literally as you're reading it. You really don't need to pre-empt anything. You'll be treated as a normal patient, just like the ten they've seen before you. Please stop worrying.
I had an appointment with the psychiatrist today. He has access to my complete medical history. Did he treat me like a lunatic (which on paper I sound like lol). No. He treated me like the intelligent human being that I am. He has agreed with my other consultant about trying to bump me up the list for a particular therapy. I don't care that his notes might state 'patient seemed clean' or 'patient was cooperative'. I only care what the fuck treatment he gets me.
You are their customer. Try to see yourself as a customer rather than a victim of the system. Doctors are really not the enemy. Particularly if you have a few to rely on. There can always be a bad apple, but trust the rest of the bag.

PS the nicest doctors I have met have been psychiatrists. The most abrupt are surgeons. I had one doctor who was doing his placements and I met him as a psychiatric doctor. About 3 months later I was in Resus and he was trying to take my blood. He remembered me and asked whether I remembered him and eventually I placed him. I asked him what he thought of the various placements (this was A&E) and he said he preferred psychiatry as it was less manic. Well we nearly coughed me into oblivion laughing at that particular choice of words. It might help that my sister is a doctor and I've seen her cry and be mean to me as a child so I don't see doctors differently to me? Police I have trouble with as they are a law onto themselves. But doctors are ok (until you read their notes lol). Please don't worry. Really don't.

I do see why you’re so distressed, OP. I’ve had similar experiences where it felt like GPs were saying what I was feeling was “all in my head”. In one case I was given antidepressants for what turned out to be an ectopic pregnancy. In another, when I asked if my symptoms could relate to CFS, I was told that CFS “is just something people diagnose themselves with after reading the internet.”

In my case, I do have long term depression which is well managed with medication. But it feels as though that’s a barrier to receiving treatment for anything else, as physical symptoms will just be attributed to that. I feel like I could just about walk in with a severed limb and they’d offer to treat it with Prozac.

The result is that I just avoid going to them, which is sort of what they want.

OP - you are over-thinking this. The doctors are there to help you. They are not out to get you. But to help you they do need to share information !!

Yes I probably am over reacting, and I’m posting partly to get my head straight so I can deal with this in the right way, without being too upset to make my points in a way that will help.

It’s quite amazing that this one letter contains the two biggest fears for me, sooo... yeah, I am freaking out and trying not to!

The combination of anything about my son, and anything that could make it even harder to get hcps to treat my physical conditions... which echoes my sisters experiences, and my sisters death, then yeah, it’s pretty much all my buttons pressed!

But no, even after what happened to my sister, I don’t think hcps are ‘out to get me’ or anything like that. I’m sure the person who was so convinced my sister was just paranoid and anxious, they didn’t do it to be evil, they did it because they believed it. But the result doesn’t change, the fact is my sister
knew there was something terribly wrong, and was in so much pain, and she was turned away. Repeatedly.

So, it doesn’t matter whether the consultant meant to create a letter that will create barriers to treatment, or not, this letter will cause barriers anyway. I don’t actually think she did set out to create a letter that implies such ‘big’ things.

And I am all for sharing information. Absolutely.

However, constructive information sharing is not what has happened here. Information sharing is different from sharing incorrect information based on wrong impressions and gaps.

Every doc I go see after reading this letter will have to spend valuable time trying to ascertain:

1. whether my son is at risk - from me or anyone else ... as the letter suggests low/no involvement by ss and no assessments, which is just plain incorrect!

1. And merging this with implications around my mental health, which has been based on a ‘potential diagnosis’ from a single assessment which has been disputed, and in fact was an extremely unpleasant and triggering experience for me (actually for the same areas that I’m finding so triggering now... I’m nothing if not consistent! But it’s was far, far worse and I’m now wishing I’d complained at the time, as what happened wasn’t ok). It’s also not a diagnosis that any other mh professionals have ever thought about. However, by referencing this and nothing else, it carries a stigma which would be another huge barrier to any doctor-patient relationship.

So, before I even start any appointment, there are all these barriers that will need addressing and then with any luck, maybe I’ll be able to have a productive appointment where a complex medical history and context means it’s more challenging for any HCP to get through anyway... all whilst battling my physical limitations which means I’ll be in agony and trying to managing a whole range of symptoms from having over done it even getting to a hospital appointment, like err, losing consciousness, which is a bit of a barrier to getting the most out of hospital appointments. Or ‘just’ vomiting, uncontrollable double incontinence, slurring my words & trouble speaking, plus the joy of short term memory issues from the medicines I take to try and do these things etc.

And to be honest, that’s more than I can cope with.

Not because I’m crazy, or stupid, or hysterical. But because it’s too much for any human to manage.

Sigh.

On a practical note, I still haven’t been able to talk to my gp, which would be really helpful to try and work out how this all happened and therefore what I need to focus on trying to change ...

Yup. You are over-thinking this. Maybe just try to keep a bit calm about it ? Doctors don't necessarily take everything they see in the notes at face value.

If you gently HELP the doctor to understand the facts and your position, it usually works out well.