When I looked up the meaning of the word confidential just now, it stated that it was information that was intended to be kept secret. Intimate, personal, privileged – these were the kind of words I found. To me that implies something you would keep to yourself and about your person, sharing it only if you chose to. This is not quite the case for medical records.
All medical interactions require records to be kept, and these records, whether electronic or paper, should be kept securely and confidentially. This seems sensible; no-one wants their neighbour or their boss having casual access to their medical notes, and perhaps even less so their loved ones. But they’re not really that confidential – medical and nursing students can read them, as well as any staff involved in a patient’s care. They can’t all ask permission, and it becomes implicit. The general public may not have any way of accessing medical notes, but there’s a big subset of them working in health and social care who will.
There are, of course, many safeguards built in to prevent this, and I think most people wouldn’t even consider it, or want to. I know where I work that accessing your own records, or those of people close to you, would result in disciplinary action, and that puts most of those who might consider it off; but a very small number will do it. There are many tales of physical conditions that you might not want people to read, but many of us would dread leakage of our mental health stories more. Sometimes you can’t separate the two. There is an age-old visceral terror of being thought to be mad if you see a psychiatrist, and very personal stuff can be said, which may be viewed differently when well.
When I was first ill, many years ago, and saw my first psychiatrist, I was assured that notes would not be kept as this could affect my career as a doctor. I was very junior then, and very frightened of this happening, and it made speaking very hard, even more so than it was already. This was not of my own making, and I had not asked them whether they would keep notes. But I understood from this that having a mental illness might not be compatible with being a doctor.
When I moved to a different area, there was no question of no notes. Given my previous experience, this was not good news. I wasn’t even working then, so didn’t qualify to have my notes kept in the special staff cupboard, although I think I was later elevated to this privilege.
I had no feeling that my notes were particularly confidential then. I knew that they would be kept securely, but I also knew they would have been seen by many professionals, and they became something separate to me, a story told about me but not by me. I never really wanted to see them, although did have a look at some of the letters with my GP on one occasion. It felt quite alien, not what I remembered, and there were factual inaccuracies which grated. I decided then that I never wanted to see them again. My psychiatrist now copies letters to me, something I initially asked him not to do. But it is probably a good thing, as it promotes discussions of any disagreements. I can’t help wondering what he would write if I wasn’t reading them, though.
Things have changed. Notes are now almost all electronic, and there is no longer any special cupboard for the staff records, and this all seems good to me. Mental health notes are also no longer separate from those for physical health, as they were previously. It is definitely better for patients if doctors and nurses are aware of all physical and mental illness, but there can still be stigmatising attitudes. I think it is sadly still true that not all doctors are sympathetic to mental illness, and I have spoken with people who have felt that their physical symptoms were dismissed because of mental illness. I believe that this does happen. It is a real dilemma, and the answer cannot be a return to restricting parts of notes, depending on the current problem. The ideal is for everyone to be kind and non-judgmental, and sadly that is unlikely to happen.
Personally, I think that keeping mental health notes separate in any way encourages stigma and discrimination, as it implies that there is something to stigmatise. There has been a massive increase in media discussion about mental illness, but not about the specifics for the average individual. These should be kept confidentially, and also respected. It is sometimes hard for people who are not familiar with mental illness to recognise that someone can recover. What is recorded in their notes is there because it is unusual.
My own views aside, I do find it quite surprising that we cannot easily access our own health records. They do not belong to us. In psychiatry and other specialties, many, like my psychiatrist, copy their letters to patients. What should be kept from people? Although I don’t personally want to see mine, I would like to be able to access my lithium levels, for example. It is a feat getting through to a GP practice to enquire about these, and because I trust my GP, I just don’t bother. I have no idea what they have come back at over recent months. I know that I am a doctor, therefore my notes may be more comprehensible to me; but even if a simplified version could be shared that would perhaps help.
There remains a concern that some healthcare professionals, perhaps particularly doctors, won’t access care for mental health because they are still so worried about the stigma, and about notes being kept. For me, the advantages of being treated locally outweigh the problems – but there can be different pressures for some, particularly trainees.
We need to give people privacy without hiding them – this is the only way forward.