GDPR/medical records

[Becca19962014]

I'm after some advice. I've been meaning to post this for a long time and am hoping once I've done so perhaps someone can help me with a way forward or, at least confirm what I've been told?

It's recently come to light that notes from the mental health team have been placed on my medical record. This means they are front and centre on GP, out of hours (medical and social services) and a&e. The problem is the psychiatrist will not accept I am physically disabled and will not change the diagnosis given to me for my mental health issues. So all I have that appears on my notes is I have borderline personality disorder, and, as a result I lie and exaggerate about being ill to be in hospital - I've very severe medical and dental phobia so actually saying I want to be in hospital or "cared for" by medical professionals couldn't be further from the truth!

This means that unless I see my own GP I cannot get treatment for anything without comments about not being ill and needing to get a job.

I have several medical conditions, all of which have been medically proven, repeatedly yet they've now been removed from my electronic medical record.

I've contacted the health board and been told the psychaitrist, along with the rest of the team, are the only ones who can remove it and they refuse to. I'm experiencing serious deterioation in my physical health - several seizures a week sort of deterioration and can get no help. The last time I saw a GP that wasn't mine I spent an hour getting my diabetes meds because she insisted I didn't have it and was mistaking panicky feelings for diabetes! Last time I contacted out of hours it took almost two hours before they would check my urine for infection because they didn't believe I was ill despite having very high blood sugar, high blood pressure and a high temperature (using equipment at home which I was told I shouldn't have by them) and struggling to urinate and ended up on antibiotics for over a week really unwell.

Psychiatry discharged and blocked me from accessing mental health care, including crisis in 2015 and I've only just found out about this after being taken to a&e recently in a crisis and turned away. I was discharged for failing to engage regarding my delusions of being disabled.

My GP is fantastic and livid and has tried to help but the mental health team will not budge that my physical health is anything other than a delusion. The GP doesn't have time to keep on at this, and the other GPs find it easier to believe the psychiatrist and my GP is leaving soon. My Consultants/specialists/physio won't help me with this anymore, they have tried with letters and meetings, now their attitude is, literally, they're not real Drs because if they were thhey'd do their fucking job properly and and not be swayed by prejudiced crap. (And that's the polite way of putting it).

This has only been a problem since the letter (and others) were uploaded to my medical file, before that I'd be asked what was wrong, say, give other diagnosis details which they could then check and get whatever I needed help with. Now I assumed to be lying and this information is at the font of my file no matter what happens.

In case anyone is wondering I've been able to claim ESA support group and PIP without dwp medical for years now on the basis of my medical Drs who do not have issue with me being disabled and neither does my GP. I've never put psychiatry down as supporting my applications because I knew they would refuse - they won't support borderlines getting benefits it's a blanket ban as its seen as a choice not illness by them.

So, any advice?

Hi Becca,

I'm afraid I don't have any good advice for you but I wanted to bump your thread in hope that someone who knows more than me will come along and offer some help.

It makes me furious that people are labelled with BPD and then routinely discriminated against.

I read this article about people wanting to get rid of the label altogether. I can see why.

www.dazeddigital.com/life-culture/article/40036/1/bpd-borderline-personality-disorder-diagnosis-label

In the meantime I wonder if it'd be worth you contacting this organisation (if you haven't already of course) and see what support they could offer you in your current situation?

bpdworld.org/helpline.html

Sorry I couldn't be of more help.
I hope someone will be along soon who is

Have you considered a patient advocate to help work thru the system

www.patients-association.org.uk/

Also I include info on a Disability Law service as you are not being treated properly as a result of the MH bias (I get it as my diagnosis sways between schizo affective and BPD depending on who I see)

My medical consultants have fought for me whereas psych acknowledges I do have problems but they are minor and dont affect my day to day life.

Thankfully the medical consultants do recognise the reality and have supported for a full care package, 4 calls a day x 2 carers, wheelchair services, district nurse when needed, home visits as needed, various treatments, waiting on adapted housing so all 5 of them are wrong obviously and I am making it up for attention cos of my MH -- 5 consultants dont know what they are doing and obviously the psych does. NOT

There's no advocacy available where I live. We don't even have a CAB or similar here.

smurfy I can't get any services because the social worker has been biased by the diagnosis as they were part of me being discharged from mental health.

@Becca19962014 - if you are willing to pm me what area you are in and I will do my best to find someone to help you as I know how hard it is. Its the UK so Im going to ask you to name the country so to keep you as anon as possible.

Do you know does your area have seperate teams for adult mental health / adult physical disability - thats a key factor.

Will reply proper tomottow, meds hitting me hard

That’s fucking awful. I’m so sorry you are in that situation.

BPD is such a dodgy diagnosis anyway.

there is a Facebook group called ‘Drop the Disorder’ there may be some members there who can offer some advice.

Oil, Data Protection Officer are, but no medical knowledge.

You can submit a Subject Access Request for a copy of your medical records (well, the content of them, rather than a copy), then you also have the right for them to be accurate, so you can ask your GP to correct the inaccurate entries from th3 other team.

Look at the ICO website for help

With regard to the separate teams that's the problem. I can only be under one yet the severity of my mental health (think frequent intervention by police* as I lose control over "voices" (mh team say that's not true and I'm fully aware of my actions as I've professional qualifications)) means I cannot have anything under adult physical disability without mental health being involved and report from them showing I'm getting help, which obviously says im physically fit and healthy so im excluded from them as well.

I can unfortunately no longer hide my mental health issues from others for more than a short amount of time so assessments always end the same way - me struggling and them phoning mh team for help and that mh don't want to know just leaves me floundering and others unable to help.

• to be clear the police I know get a lot of shit regarding mental health they've been very kind to me and really tried to get services to take my issues/needs seriously, more than once I've been caught between police and mental health team with them arguing, once I was taken by police to another county for assessment.

audit I've been told as the letter states im not to have access to it, or any mental health records under any circumstances when I requested them was refused access.

I only know about it as the last dr I saw showed me the letter saying that I cannot have access and above that it says I'm a pathological liar about being disabled and desperate for medical attention because I'm lonely with "the diagnosis" after that.

As far as I'm aware there is no other way I can get the letter. I'll look at the ICO website tomorrow in case this is incorrect though.

I've asked for a note to be put on my notes but that has been refused as they needed the psychiatrist to agree and they're refusing.

I was told that BPD is the automatic diagnosis for everyone here until they prove otherwise. I've been told with my background like being in foster care (which the mh team has told me must have been abusive and was not and the issues with my parents have been deemed to be my fault as they've tried to get me to return to my family for care (was under different county for fostering) and attending with self harm/non fatal suicide attempts and must lie about having friends long term so I cannot have anything else. BPD is not an illness and certainly not recognised as a disability.

I've been diagnosed with other mh issues elsewhere (dismissed as they were private assessments not nhs). I'm not denying I have issues at all, it's just that the crap I've had from them (which I was advised by my consultants to ignore as they'd no right to dismiss my needs) has now spilled over into medical records and is effecting other care as there's no way to guarantee I'd be seen by someone who knows my illnesses everytime I attend for treatment who will ignore the shit on my file - in fact it's impossible as I'd first need to get past junior staff before seeing a consultant in emergency situation and outpatient clinic is every two years. I've also spent a lot of time with people saying shit to me like diagnosis doesn't matter it's just about needs for assessment, and I'm angry I've been misled as obviously the only thing that matters is this label and the prejudice around it.

I can hear how angry and frustrated you are and totally understand it,

MH are denying your physical health needs which are recognised by consultants in appropriate specialities.

You are being let down big time.

As PP mentioned a subject access request (SAR) did you get a letter back explaining their reasons for denying you copies of the record?

The patient support line above covers England www.patients-association.org.uk/ as mentioned above

www.ascymru.org.uk covers Wales

www.siaa.org.uk/us/independent-advocacy/faq/ covers Scotland

www.patientclientcouncil.hscni.net/ covers Northern Ireland

Whichever one of those organisations are in your area will help you go thru processes and fight your corner, and they are free so that helps.

Also from your PIP and ESA do you have copies of the statement of reasons, basically why they awarded you points from the physical side of your health.

With regard to everything else, your GP is supportive and is livid on your behalf, the medical consultants know your conditions are real. I don't think that the psych should be altering medical records but it's a long time since I worked in medical records and I was only a temp and filing clerk.

Just a random thought, with your GP support, how about doing a letter/email to the secretaries of the medical consultants (so the consultants by default) explaining briefly that your medical diagnosis has been taken off your electronic record and ask them to replace it so that you have a full detailed record.

Take all emotion out of it, dont want to get their back up as in my experience Drs will all protect their own and each others prosteiors before the patients.

For your diabetes consultant, (endocrinologist) explain you have had problems getting the insulin you need due to this occurance and in an emergency if out and about, you may not be able to explain you are diabetic (hypo) and due to the MH team taking your medical conditions off your records, it puts you in grave danger.

My care package is run by an ASW from the physical dis team, I have a CPN who I have an agreement to let her visit for 30 mins per month, I can concede to that as it keeps them off my back generally.

Totally understand the prejudice and stigma of this label. I offer you a hug and a hand to hold

I know how letters can change everything and make everything bias against you.

One after a hospital admission back in 2010 accused me of faking the symptoms, faking 2 falls, told me I was fine as I didn't bruise (it was less than 5 seconds after I hit the ground), explained I was drug seeking.

The FY1 actually called me a drug seeker when I asked for my dose of painkillers before I was discharged as they were due. I was going straight home in a taxi and only had pyjamas on and wouldn't have had time to stop for fecking paracetamol, (the hard addictive stuff) she called me an addict across the ward, I made a complaint.

I brought the discharge letter to the GP, who spluttered and laughed as a shock reflex (she was the tough nut GP), and said crikey, what did you ask for? I cried as I explained what happened, I'm physically dependant on quite a few meds but in her mind (and she is the hard-line one) I am not an addict. It made me feel absolutely awful.

I complained about the Dr, she had missed the discussion with the registrar and the consultant so didn't get the bit where they were reviewing me and planned to refer to 2 other specialities.

The FY1 had gone by that point and started doing my discharge letter. A lot of important bits were left out.

Thankfully the GP got speaking to the consultant and he explained the chat he had with me and where he was referring on to, she pointed out none of that was in discharge letter, apart from suggesting that the GP refer me to addiction services.

Now I double check any letters before I am discharged from hospital and will challenge them to get them changed and amended even if it doesn't make me popular.

Just to be clear I'm more emotional here than when writing to them!

The letter I got back from the SAR "Dear x, Thankyou for the request for a copy of the letter . Unfortunately we are not allowed to comply with this request as the letter states the following "it says it's not to be given to x, or her solicitor or a representative acting on bahalf of x under any circumstances" Yours Sincerely, Data Protection Dept"

The consultants know. They have also asked for it to be removed but the health board insist the only way for this to disappear is for the psychiatrist and mh team members to agree and they don't.

The letters from consultants are on file.

This has been going on for almost two decades now. They now won't engage with it at all as it makes no difference just wastes their time and ends up in them arguing with psychiatry who say I'm conning them and only they can tell (so questioning their ability to their jobs properly and pissing them off). I don't see the diabetic consultant am under GP care but have others. From their point of view I was diagnosed at a specialist unit in London and no one should be disputing that, particularly not a psychiatrist with no evidence whatsoever.

I had a solicitor involved at one point and the mental health team were asked to provide their medical proof and evidence of lying, what they provided was a copy of information about being borderline. They were asked again, more specifically this time, things like blood tests/MRI/ct other tests for my illnesses and didn't provide it so were told to stop immediately as it could potentially put my life in danger and they were failing in their duty of care as they'd no medical reason not to accept my diagnoses (they were given, again, copies of consultant letters). They apologised and said they would. Then this letter was put on my file a week later. Literally a week later and like I was told it says it's not to be given to me or my solicitor or a representative under any circumstances.

I can't get anything changed at all, I've tried. I just get referred to the fact that I'm borderline, am making a needless fuss and don't know what's "really" going on.

My GP has tried, they even went there in person to explain, psychiatrist accepted it to their face then told me they were overriding the GP!

I witnessed when they spoke on the phone as the GP said I was delusional about them not believing me so set up a telephone conference - the psychiatrist started by saying they didn't believe I could have anything "really wrong" and then it descended into an argument - I've never seen a GP so angry, they slammed the phone down after the psychiatrist said they were just a GP and had no idea about medicine and shouldn't indulge my delusions.

They now won't attend any meetings there.
Same happened when consultants and physio went.

It's all well and good to expect people to keep non emotional and professional but the moment you question someone's professional ability that can go out the window. I never expected the psychiatrist to say what they did to my GP, I was GP was I've not witnessed the conversations with the others but I've heard about them and seen how angry they were in explaining.

I can see their point, diagnosis is made, treatment options in place (or not as the case sometimes is) the diagnosis is job and they're doing it and a dr in a totally unrelated discipline is coming along saying they're rubbish at their job, whilst completely ignoring the needs I have in their discipline!

Sorry, last post I promise, am on my way out to appointment, I was hoping I could get it changed using GDPR but it looks like that's not going to be an option.

(((big hug) Becca,,

I didn't mean emotional in the sense that in a letter they could throw it against you. Apologies if I offended you

You have been thru the mill and are being thwarted all the way so that says to me they have something to hide.

I know how things can get, as I said above I sway between the 2 diagnoses depending on who I see (schizoaffective and bpd) So frustrating but Il have a think and see if can come up with anything else

Have you considered going the legal route for medical malpractice? Would that be an option?

You didn't offend me, sorry, am struggling a lot

I'd need to fund legal action. I contacted my solicitor from before and they said there's no legal aid for this and I've nothing left over from my benefits to save.

One dr suggested to me that if they believed me about my physical conditions then they'd have to at least consider I was telling the truth about my mental health that, or they've severe issues of their own given there's no shame whatsoever in being told you're wrong about diagnosis by a world leading specialist. Both are possible I think. I also think it's easier to label someone a liar than to try and help.

I know there's only so much anyone can do and honesty im getting to the point where I can't be bothered either, struggling every day and beginning to wonder why I'm bothering to be honest. I don't have say in being carted to hospital if struggling and being treated the way I am is really hurtful, not to mention knowing I cannot access mental health care even in emergency reinforces how worthless I am. Im in a situation where I'm lying to my GP and police that I'm accessing support in a&e when in crisis (they don't contact GP everytime I go) and eventually they'll realise I'm lying to them because I just can't bear the shit I get.

Becca, I don’t think they can legally refuse you access to your medical records. Put in a new request under GDPR regulations - you are entitled to all data they hold on you, and you are entitled to have it rectified if it is inaccurate. You had the right to see your records under a subject access request before, but GDPR seems to have put the wind up some companies and there are fines for non compliance. If they refuse, seek advice from the ICO.

It was a request under GDPR I just didn't know if they could legally prevent me still which they're saying that can but I wondered if that was correct, I'm going to contact the ICO I think.

Yes, the ICO seems like the best step forward now.

I’ve just had a quick look and I think it’s pretty unambiguous that you are entitled to your personal data. Link

Sorry you’re having to deal with this and let us know how you get on

Also, just a thought as I was at GP yesterday, my surgery have given me copies of a lot of letters and results of tests etc.

Can you ask GP surgery if you can have a copy of the letters from psych to GP? I know in my surgery anyhow for copies to be given out, put the request with a list with dates if possible to the Practice Manager who has to get the approval of the GPs.

I don't have access to an electronic record so I don't know if they restrict parts to you. At least you get a better idea what is in writing about you.

Thankyou.

I have requested them but I've been told I'm banned from having them due to them saying I'm not to have them under any circumstances.

I know why the ban exists - it's because if I had a copy and gave it to solicitor they'd be sued out of sight.

I've emailed ICO to see what they say.

I think, nearer the time, it would be worth having an appointment with your GP and asking them to personally speak to another GP at the practice about you and explain what has happened. With the idea that you can then become that GP's patient, once your own doctor has stopped working. I'm sure your GP would know which other doctor would be sympathetic to your situation and happy to support you.

They thought the one I saw last month was the most sympathetic! They even sat and explained everything to them. They were not happy when I said what happened.

“Not to be provided under any circumstances” is not a lawful reason to refuse your request under GDPR. They should have quoted chapter and verse of the new data protection act 2018 to set out the relevant exemption(s) they are relying on. The Ico should be able to help.