Over the last couple of years, I have become one of many volunteers who give voice to the patient perspective as a peer leader and ‘patient safety partner’ for the NHS. Everyone has their own story to tell and not everyone shares the same perspectives. Predictably many people in this arena believe that psychiatric diagnosis, psychiatric drugs and ‘treatments’ are a good thing, and what the mental health system needs is more of the same.
But my personal experiences are equally valid and so I choose to share what I have been through and contribute as best as I can, in the hope that it will improve the care of others who have had the misfortune to become entangled within psychiatric services for any significant length of time.
One of my more recent experiences brings to light the complexities and the pitfalls associated with the digitalised medical record, particularly for those of us who have found ourselves diagnosed with a ‘psychiatric’ condition.
Six years ago, I made the decision to tattoo my arms to try and camouflage the scars left after what for me, was a regrettable five minutes with a razor blade on a visible part of my body. Self-harm was never a healthy coping mechanism for me at any stage during the years I was labelled with’ treatment resistant depression’ and for the most part, I don’t think about it anymore. But visiting the doctor still fills me with dread. Some may say I am supersensitive, and perhaps I am, but the fact is that I have had symptoms ignored as well as been subjected to overt ‘eye rolling’ and derogatory comments during the time I was a psychiatric patient.
I wonder how many people are aware of the ‘Active Problem List’. It commonly sits on the NHS primary care record, so that when a GP accesses their patient’s data, there is a list of information alerting them to conditions that the patient has had in the past and which may be affecting them currently. As far as I understand, such a list should be more than an aide memoir, because it’s designed to keep patients safe whenever they seek help from primary care, and it can easily be copied and communicated to other care providers.
However, I was in for a shock when I discovered that the historic data from the years I spent as a psychiatric patient sat on my ‘Active Problem List’. Frankly I was horrified. While it is not unusual for doctors to see patients labelled with various psychiatric diagnoses, what distressed me personally, was what the specific information on this long list said about me.
Each line on the list was preceded by a different diagnostic code – I counted 15 specific ‘items’ on my list which related to an ‘episode’ during the time in my life when I was incarcerated in several psychiatric hospitals. It seemed cruel, as though these particular ‘events’ had been plucked from my vast record to give me maximum embarrassment – most majored on self-harm. Each code was followed by a description – words like: ‘suicide attempt’, ‘overdose’, ‘laceration – self-inflicted’, ‘deliberate self-harm’, or various iterations, as well as ‘chronic depression’, ‘first ECT’, ‘admitted under section 2, ‘admitted under section 3’…….the exact wording may not be entirely accurate as I cannot bear to go back to the original, but you get the picture.
So here I was more than a decade since the last time I was hospitalised, more than 20 years since the first entry on the list, and yet these were termed ‘active problems’. Thankfully, I no longer take any psychiatric drugs! Perhaps If I did, I would indeed still have ongoing events to add to the list of coded entries, because for me, being prescribed antidepressants preceded the suicidal thoughts, suicidal intent and the acts of self-harm that followed. For me, psychiatric drugs were the compounding factor that turned my reasonable ‘distress response’ to abnormal circumstances into the nightmare diagnosed as ‘depression’ which then escalated after ‘treatment’ with multiple drugs and ECT to further admissions and detentions under the mental health act.
Of course, the problem list makes no mention of why I had reached this awful state, merely mentioned the progression to ‘treatment resistant depression’ which is supposed to be enough information to explain everything but in fact explained nothing. What was worse, was the realisation that as far as my medical records were concerned, doctors were being warned to keep their beady eyes on me because one never knows what might happen given this patient’s history – she’s clearly highly unstable.
It’s funny how often when I voice my fears of having this information front and centre, I am given a somewhat patronising response – “there’s nothing to be ashamed of”. Please don’t get me wrong – I do not think anyone should be ashamed by their encounters with the psychiatric system, but I’m talking about me. I spent years being told that my feelings were pathological – and now I don’t like being told what I should or shouldn’t feel. I am willing to discuss what happened when asked, but I do not want the most sensitive parts of my psychiatric past on display without my consent. It feels like a violation.
So I sought advice; I needed to know where I stood legally on how to get it put right, before I formally wrote to the GP practice. To my dismay, I discovered that it is impossible to get ‘psychiatric events’ erased from the medical record. After several exchanges by email and phone via the practice manager, I was invited to discuss the situation with my GP and to give her credit, she completely understood that the information held on the ‘active problem’ list was no longer relevant. But she also reiterated that there was no way the information could be deleted from my record, however irrelevant they may seem to me. When I pointed out that it also contained factual errors like incorrect dates, she sighed. I had stumbled upon digital mayhem.
At some stage during the digitalisation process, a non-clinical administrator had trawled through my paper records from ‘back in the day’ and entered the information onto the digital record and now those original records had been archived. My GP wasn’t about to offer to do it all over again, and who could blame her? After all, I had spent seven years in and out of hospital from 1994-2001 and had hundreds of letters and clinic visits and trips to A&E during that ghastly, seemingly endless nightmare. And it hadn’t stopped there but continued with another peak from 2005-7. My GP records were huge – perhaps I should be grateful that only 15 lines worth had appeared on the active problem list.
But I pointed out another major concern – important information about my physical health was missing. There was no listing of the fact that I had a severe, genetic reaction to anaesthetic. There was no note about the appendicectomy or the preceding sepsis after another GP had summarily dismissed my complaints of abdominal pain which led to a delay in diagnosis. My current GP did her best during our 10-minute consultation, dutifully cutting and pasting from list to list but it was at best a rushed job. But at least I thought the new ‘problem list’ was acceptable.
It was all forgotten by the time I had the cancer scare and an urgent referral to a gynaecologist. Naturally I was slightly anxious before I went to the appointment, but my heart rate went through the roof when I saw the gynaecologist’s computer screen. There before his eyes was that original ‘active problem’ list full of the historical entries relating to my time as a psychiatric patient.
I don’t like the idea of going to meet a strange doctor especially when I’m feeling particularly vulnerable, and if they’ve done their due diligence, they will have already read the referral letter and have a preconceived idea of who I am and what I’m like. Doctors can’t help being biased – we all are – it’s human nature. And don’t tell me that stigma no longer exists. I know full well it does. The thing is, I’m a doctor myself, and it very definitely does.
In 2015, I initiated a pilot study to look at the attitudes of A&E doctors towards patients with a known ‘history’ of psychiatric diagnoses. The results confirmed what I had already observed. When asked anonymously, doctors at all levels of seniority tended to rank those with psychiatric diagnoses as possessing a lower pain threshold; they thought that these patients were more likely to complain about their symptoms than others, and were more likely to attend A&E for trivial reasons…in short, patients with any kind of psychiatric label were less likely to have their physical symptoms taken seriously. They were given short shrift. Even in the 2020s, I had seen this phenomenon on a regular basis, and those of us with a history of ‘mental illness’ were more likely to have our symptoms labelled as psychosomatic – in my own words ‘fobbed off’.
I have tried to discuss these attitudes, but usually it provokes a defensive response – “things have improved”, is what they say. Culture is slow to change, and while it is easy to say the right thing, inherent bias continues to be practiced. It may be more difficult to see, but prejudice and discrimination continue to exist.
Back to my story – when I saw the gynaecologist, I was mortified. My records were wrong, out of date, inaccurate and revealed unnecessary and sensitive information. Knowing I had to return for further investigations under anaesthetic, and then for surgery, I was determined to get it put right. But it was galling to have to explain the situation in detail to even more people I didn’t know. It turned out that the hospital could not ‘alter’ my records because this information had originated from my GP. The only way to get it changed was for the GP to initiate contact with the hospital in writing using specific wording – the GP must request that my referral be ‘redacted’ from the system, which would then authorise the data controller to remove it. Following this, the GP must then forward a replacement referral with the correct information.
My GP was bemused. She could not understand what had happened after she had already edited my ‘active problem’ list. When she delved into it, a wider issue came to light. The practice tried to understand how the software had generated th pre-populated referral form and went as far as contacting their software provider for the region. It turned out that certain coded entries were pre-set – to be pulled from the entire medical record automatically and could not be changed, (whether the GP or I thought it to be relevant or not). I felt sick.
Although the GP practice did their due diligence and sent out a new edited referral letter to the hospital, they also realised that the same thing would happen anytime a referral had gone to any provider elsewhere in England, and so this information would spread throughout my medical record. They agreed to put a note to check should I require any further referrals. But this illustrated the potential for catastrophe, not just for me in this situation, but for the many people who do not want to be pre-judged on sensitive or erroneous information which would then be eyeballed by numerous people throughout the NHS.
Within days of stopping the last antidepressant in 2018, I had started to suffer from symptoms of small fibre neuropathy. I believed the latter to be a protracted withdrawal syndrome – but the specialist London neurologist refused to acknowledge that antidepressant withdrawal could possibly be the cause. And then I remembered – perhaps he too was biased – after all, he had also received that same information about my past, before I had discovered that it was sent with the initial referral.
If I had committed a crime, then after seven years it would be erased from the system, but not a psychiatric history – that will stay on my record for ever. There is no right to forget, and it means that however hard I try, I cannot erase the long and checkered history described by my medical record.
Although what happened then does not define who I am now, I still hope that in speaking out in my role as a patient voice, will provoke some change for the better in the NHS. But more than that, I want to advocate for a different way of thinking altogether. Many who read posts on MITUK or who join AD4E, support the de-pathologising of what are often known as ‘mental health problems’. Those who suffer distress or struggle should be offered alternative ways of receiving support, and then hopefully fewer people would succumb to the routine medicalisation which is so prevalent in society today. Perhaps then they would be spared the regret and embarrassment of finding highly sensitive information engraved forever onto their medical record.
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Mad in the UK hosts blogs by a diverse group of writers. The opinions expressed are the writers’ own.