Following on from the several threads I have made on Twitter regarding confidentiality in NHS Mental Health services, I have decided to write a blog post highlighting exactly how far my personal information, including childhood sexual abuse disclosures, have travelled across several services within the NHS, and also outside of the NHS.
These numbers include all Mental Health professionals/other professionals who have had access to my medical records since I was first referred to the Community Mental Health Team towards the end of 2011 up until the present day.
Professionals from within the Community Mental Health Team:
5 Care Coordinators
1 Support Worker
1 Occupational Therapist
An unknown number of extra professionals as a result of MDT’s/team meetings/team formulations
At least 15+ different crisis team workers
Professionals from within the Crisis Team Services:
5 Crisis Team Psychiatrists
1 Psychologist (just coming to talk to me about whether I felt ready for a possible therapy referral)
At least 6 junior doctors present across several CPA’s, who typed up notes for the main doctors in charge of the meetings
Unknown number of extra professionals as a result of MDT’s/team meetings/team formulations
Professionals from within a council led Mental Health Service:
As a result of the council service obtaining a copy of my latest risk assessment (without which the referral could not be processed) the following professionals had access to incredibly personal and private information about me:
2 Support Workers
An unknown number of council workers responsible for deciding who is allowed to access their service based on viewing risk assessments during team meetings
Professionals from within Perinatal Mental Health Services:
2 Care Coordinators
Unknown number of extra professionals as a result of any MDT’s/team meetings/formulations/ward rounds on the mother and baby unit
Professionals from within GP surgeries:
9 GP’s (across 3 different surgeries)
2 Health Care Assistants
2 Community Midwives
1 Practice Nurse
An unknown number of professionals from one GP surgery as a result of a Cognitive Analytical Therapy Formulation being sent to the wrong GP surgery due to admin error
At least 1 member of the public, as a result of a Cognitive Analytical Therapy Formulation being sent to the wrong NHS patient’s address due to admin error
Unknown number of administrative staff across all of the above services due to any work involved in gathering and organising medical notes/letters etc
At least 10 student nurses across all of the above services who attended appointments with professionals when I was too unwell/frightened to ask them to leave
It was never properly explained to me, when I was first referred to the CMHT, the true extent of how far my personal disclosures of childhood sexual abuse (and other personal information) would travel. In terms of confidentiality, I was given the usual information regarding how confidentiality would be breached if they had knowledge that myself or others were at risk of harm in some way, but nothing beyond that. I didn’t understand at the time that letters would be written up from every single psychiatrist appointment and then sent to my GP and held in my permanent medical records. I didn’t understand at the time that all Mental Health Professionals would make notes of any appointments with me and that they would be placed in my permanent medical records. I didn’t know at the time of my very first disclosure of childhood sexual abuse to a Mental Health Professional, that several other Mental Health Professionals would inevitably end up reading that disclosure. I naively assumed it would stay between me and the professional I trusted enough to confide in. I didn’t know that the diagnosis of Emotionally Unstable Personality Disorder would be permanently written (in bold) in the diagnosis section of my summarised notes, meaning that anyone from a specialised mental health professional to a random health care assistant doing a blood test on me at a GP surgery one day, would be able to see that Mental Health Professionals decided my personality was disordered. I didn’t know that detailed notes of my psychological therapy sessions would be made. I didn’t know that a “psychological formulation” would be made about me and then sent to other mental health professionals without my true consent. I again naively assumed that what was said between me and the psychologist would stay between us. I didn’t know a lot of things.
Was having all of these professionals accessing my personal medical notes across the years worth it, in terms of the NHS mental health specialist treatment I would go on to receive to help me cope with the aftermath of childhood sexual abuse? The answer to that is sadly no. 6 months of Cognitive Analytical Therapy was not enough to balance out the damaging effects of losing control over who found out about the abuse I endured as a child. And I say this as someone who is acutely aware that I’m actually one of the lucky ones in terms of how many sessions of therapy I had. Lots of people do not get access to this.
I have had a look at the numbers of professionals I have recorded in this blog post and worked out that, of the professionals I *know* have seen my personal information about me so far, there have been:
At least 75 professionals
This figure is likely to increase way beyond 100 when you factor in the amount of unknown professionals who have seen my medical records as a result of team meetings etc, as recorded above for each service encountered.
If somebody was able to tell me at my very first appointment with the CMHT, that over 100 NHS professionals would likely see personal information about me and my mental health, including my incredibly personal disclosures of childhood sexual abuse, I would never have continued with the service. I will forever regret sharing some of the things I did. And I will never stop trying to raise awareness of how important it is to fully explain confidentiality to patients, and how potentially damaging it can be to not have it fully explained.
Thank you for reading if you have.