Access to Medical Records - –
A Personal Experience
How many times have you sat through an appointment with your doctor and wondered "What is it he keeps writing about me?" Between 1988 and 1994 my psychiatric file expanded steadily until, in 1994, I had several files. I was fortunate, however, in that I came off medication and found my way out of the system. I have since avoided doctors like the proverbial plague. But I did wonder why so many trees were killed in my name and, as I walked out of hospital for the last time, I requested copies of my records under the 1991 Access to Medical Records Act.
Under the 1991 Act I was only entitled to records from 1991 onwards but even these amounted to a hefty pile. Once home, after a quick flick through some of the pages while on the bus, I boxed the notes up and left them to gather dust in the loft for the next few years. After that I didn’t really think about them.
As I re-discovered a life outside of the psychiatric scene I almost managed to convince myself that my psychiatric history had not really happened. My son was born in 1995 and, during the inevitable discussions at toddler groups about our ‘previous lives’, I mentioned the different jobs I had done in the past. I just omitted to mention that I usually only did them for a few days before becoming convinced that my boss was plotting against me. I avoided discussions about post-natal depression. I knew too much about depression to make an authentic ‘lay’ comment so I just sat on the fence. Surprisingly I found child rearing easy.
Around the time of my first admission to a psychiatric unit, when I was 17, I had been caring for my elderly grandparents full time. Dealing with a stroppy two-year old was a breeze compared to watching the tantrum of an 83-year-old grandmother who insists that you are her best friend from school and you have stolen her boyfriend. And while I felt trapped by the overwhelming feeling of responsibility that accompanies having children, it could never compare to the hopeless loss of freedom that a Section 3 brings.
My daughter was born in 1998 and around this time I signed up with the Open University to do a social sciences degree. My partner and I then moved to Northamptonshire and I soon met people through my involvement with local voluntary work. My dusty box of notes moved into the loft of our new house with us but, being in a new area, I felt even more removed from my experiences of psychiatry. However, I remained afraid of the medical profession and psychiatry in particular.
To live with this fear I convinced myself I would never become depressed again. To do this I increasingly cut myself off emotionally, distancing myself from anything that might cause me distress. I kept any concerns or worries to myself because I was afraid that they would be interpreted as ‘problems’ or as a sign of my declining mental health. I trusted my partner implicitly but still felt that I if I ever admitted to feeling unhappy then he would worry that I was ‘relapsing’. My strategy worked in as much as everyone thought I was fine and, superficially, I believed it too.
Then, a couple of years ago, one of my son’s classmates died in a tragic accident. For the first time in several years I was forced to confront feelings that I had managed to avoid for years – despair, hopelessness and the feeling that life was meaningless. For days I felt emotionally blank, cut off from everything as though nothing mattered any more. But increasingly I became acutely aware of the vulnerability of my own children and how I must consider their lives a gift not a right. I realised, also, my own vulnerability. What would happen to me if one or both of my children died? I couldn’t just put it out of my mind like a box in the loft.
I was angry that an innocent child had died and overwhelmed by the powerlessness I felt at not being able to change the past. But I was also terrified that something like this could tear our own family apart and lead me down into the black hole that had kept me in hospital so many years ago. I found support during this time from the other mothers at school. We all comforted each other and I realised that the feelings I had were a normal reaction to this tragic event.
In my grief at this little boy’s death I felt a desperate need to take my medical notes out of the loft and confront the beast that had been hidden between their pages for so long. I realised that I could no longer avoid this part of me that I feared. I spent a whole morning getting to know the person I once was through the eyes of the doctors and nurses who had treated me. Pages of clinical notes, medication sheets, nursing records, ECT forms and section forms. Was this really me? A diagnosis of schizophrenia? I could not deny what I was reading and, as I read the doctor’s notes in detail, I was forced to remember some of the times I had been admitted to hospital in a state of total terror, convinced that I was being persecuted by a threat that I could not define. Most of my admissions were on a Section 3 and, as I read the forms supporting my admission, I remembered the overwhelming sense of persecution, threat, fear, vulnerability and despair that I felt at those times. How could I have forgotten how awful that was?
After spending several hours reading my records I felt physically and emotionally gutted. Two years later I still feel a sense of vulnerability - a realization that our concept of reality is so fragile and so open to debate. Can I really say that my present perception of the world demonstrates ‘sanity’ just because the majority of people would agree it does?
At this moment in time my version of reality is miles away from my children’s … can there be no monster under my bed simply because I have never seen it there or are my children just insane? We all know so little and we live in our own versions of the world so how can anyone claim that their own version of reality represents The Truth. Can we trust those that define reality simply on the grounds of status, power and professionalism? Of course not. No more than we can be certain that our own reality won’t one day be called into question. I’m no more vulnerable to what society defines as ‘insanity’ than the next person and yet I’m no less vulnerable, despite a wealth of experience.
In a diary extract I wrote hours after reading my notes I have written “maybe that is why I feel so scared after what I have read today - no-one, not even myself, can say it would never happen to them. I do not feel as safe as I did a few hours ago. I’m only human, after all”.
And that is really what I have learnt from reading my notes - that I am only human. I am as vulnerable as everyone else. I cannot guarantee that I will never become deeply depressed again, but neither can you. Reading my records was not easy and I still find it hard to accept much of what was written about me but I am so glad I did it. By putting myself back in touch with that vulnerable part of me I now feel more human. I am now able to talk about how I feel with people who I trust and get support when I need it. My fears, that people will link my feelings with my psychiatric history, have proved unfounded.
But, most importantly, I do not fear psychiatry anymore. By confronting its reality in my notes I have learnt more about how the system works and where it fails. If I ever entered it again I would be a much wiser person than the naïve 17 year old who first walked through its doors. But I am not that naïve 17 year old anymore so I no longer need to be so afraid. I hope that by finding the courage to stay in touch with my feelings and seek support when I need it that I will never need psychiatry again. However, I did have contact with psychiatry only recently. This was to check on the progress of my application under the Freedom of Information Act 2000 for access to my medical records prior to 1991. I was told that the photocopier on the microfiche machine had become overheated due to the large quantity of my notes being copied. I can’t believe I’ll have to wait another week for these notes . . .
Perry lives in Wellingborough with her partner and two children. She enjoys
writing and has a particular interest in issues surrounding birth and mental
health. She is involved in a number of local voluntary groups working with
pre-school children. She hopes one day to do research into the links between
maternal birth experience and mental health/family relationships. She was
recently awarded a Real Lives Real People – Mind Millennium Award which has
enabled her to undertake a creative writing course that she hopes will help
develop her writing skills. As part of this award she has written various
articles about her experiences, which she hopes will help raise awareness of
mental health issues.