The Sophia Mirza Archive, compiled by her mother, Criona Wilson.
The life and early death of a severely affected ME patient.
Hospital doctors have a wry saying that “physicians bury their mistakes - psychiatrists lock theirs up”. In a sense, Sophia Mirza defied both of these options. Her forced detention within a mental hospital was reversed within weeks. And although she died as a consequence, her voice lives on. She still bears witness against those who persecuted her.
That her voice can still be heard is due to her mother Criona Wilson who, uniquely, has published her daughter’s confidential medical case notes online. With visionary foresight, Sophia tape-recorded crucial interviews between herself and her doctors, and the transcripts form part of the archive. Sophia was lucid, rational and defiant to the last.
ME patients are unfortunate with their doctors. While most other patient groups have a trusting relationship with the medical profession, far too often ME patients complain of neglect, abuse, misdiagnosis and stigma. Our patients have a visceral dislike of the psychiatric construct of ME, and for good reason. Besides the disadvantages of misdiagnosis, it forces them into a clinical environment where the validity of their opinions is routinely delegitimized, where their right to give informed consent is often not respected, and where in some cases they may be subjected to involuntary detention. These are fears which lurk in the minds of all ME patients. For Sophia Mirza they became a nightmare reality.
This online archive provides a compelling narrative of Sophia’s last years. But it is a painful and frightening experience to read her case notes. For this is the kind of tragedy that has the potential to affect many other patients, and from which many of us have escaped only by good luck. The narrative has the quality of a real life drama documentary, and hopefully will raise awareness among an audience beyond the confines of the ME patient community. There are close up factual portraits of patient and family, the psychiatrist, the GP and the social worker. The ineptitude of the NHS in respect of ME degrades many patients. But the nature of the disease inflicts its own humiliations on patients and family. The grim reality of life for the severely affected is described here in unsparing detail. It required considerable moral courage for Criona to publish this archive unedited.
It is possible for good to come out of tragedy. Sally Clark, Trupti Patel and Angela Cannings suffered miscarriages of justices: but now it is much more difficult to falsely accuse bereaved young mothers of Munchausen’s by Proxy. Sally Clark and Sophia Mirza were both martyrs, literally, to medical failure at institutional level. But Sally Clark’s case fatally undermined “Meadow’s Law”. Hopefully Sophia’s tragedy will have the same effect on “Wessely’s Law”.
Horace Reid, 1 May 2008.
Downloading the files.
Sophia’s case notes were first posted online by her mother on 28 April 2008 at http://www.sophiaandme.org.uk/ With Criona’s permission, I have downloaded the files and collected them in easy to read pdf format.
Criona arranged the documents in four sections.
1. The red section gives a chronological list of 213 documents from Sophia’s medical records. A large and representative selection are published online.
2. The blue section contains Social Services documentation, including the warrant to search for and remove Sophia, and the report from the independent investigating officer.
3. The purple section contains correspondence with the Attorney General’s Office.
4. The fourth section, (also red) contains Criona’s correspondence with the GMC in respect of six doctors.
For ease of downloading I have divided them as follows.
4. GMC Correspondence: MirzaDrs (6.4MB).
Note: you can get a copy of the original Adobe Acrobat Reader here for Windows, Mac or Linux OS
For a more compact Windows pdf reader with a small file size use the Foxit Reader here