I write this in support of the Systems Generated Trauma report.

My experience of system generated trauma comes from a parental perspective, and as being a mother of a disabled child. My son was diagnosed with autism in his teenage years, however, prior to this and throughout his childhood, he had multiple difficulties that led my family into the medical paediatric system. Over a number of years and at various times, my son was seen by medical specialists for sleep difficulties, sensory processing and integration problems, hypermobility and pain sensitivity, tics, and restrictive eating challenges due to sensory aversion to foods. Navigating the medical system was in itself complex and involved numerous waiting lists, being sent to department after department, and having to repeat my son’s history over and over again to different professionals. As a mother and caregiver looking after my son’s needs, I personally found this process both arduous and at times problematic, but followed recommendations I was given and took my son to every appointment that he was sent to. My son has complex needs and it was recognised and documented in my son’s medical records that his presentation was complex and that from a medical perspective, thinking ‘outside of the box’ was required.

This experience was, I believe, completely avoidable

At 10 years old, my son was referred to CAMHS Eating Disorders Service for assessment and treatment of Avoidant Restrictive Food Intake Disorder (ARFID). Unfortunately at this point, due to a number of misconceptions, miscommunications and misunderstandings by the service, my son’s care went drastically wrong, leading to significant failings of care, and a subsequent  traumatic experience ensued when attempting to address these failings. This experience was I believe, completely avoidable.

Initially, I raised concerns with CAMHS about my son’s care and his needs, to no avail. This then escalated to having to make a formal complaint about the service he had received and the failures that occurred. I didn’t particularly want to go down this route but my son needed the correct care. Some failures were acknowledged by the NHS Trust, however, many of the points I had raised were unanswered. The Trust agreed to arrange alternative care for my son and to provide medical management that he needed. I accepted this as a solution even though some concerns had not been thoroughly addressed, as ultimately the main outcome I was seeking was for my son to receive the care he needed. The NHS Trust then proceeded to do the opposite, did not arrange any alternative care and left him without any care at all, thus, failing him all over again.

The NHS complaints process took many months. Throughout this time, I had also requested my son’s medical records and I encountered a phenomenal amount of difficulties with this request, both with accessing the records and also with the records themselves. Over a lengthy period of time, problems that arose included being informed in writing that some of my son’s records had been misfiled, did not exist at all and could not be found. In addition to this, I received records that were incomplete, unsigned by consultants, patient identifying details had been removed, removal of my own signature from a document that I had sent to them, and rectification requests were ignored entirely. I was also met with extreme defensiveness and numerous walls of silence and delays.

It is within this process that I also noticed a much more sinister pattern had emerged. CAMHS had inserted retrespective entries into my son’s records months after leaving their services due to their known and documented failures. These records stated that I had declined treatment for my son which they knew to be false information, that my non-engagement with services was a safeguarding concern, and in the very next sentence made a contradictory statement that my presentation to multiple clinics was also a concern with the insinuation of FII – these are the clinics that my son had been sent to by professionals. It became very clear to me that behind the scenes I was being parent blamed. It got worse.

It became apparent that the records that the NHS Trust appeared to have misfiled or were incomplete in some way all related to their failings of care of my son, hence, evidence that proved accountability of those failings. But not only that, records were being withheld across the various departments that my son had come into contact with, and it is these exact records that would disprove and refute FII entirely. I knew this because I already had copies of these records prior to making a complaint about my son’s care. No safeguarding concerns whatsoever had ever been raised about me as a parent or my family prior to raising a complaint, confirmed in writing by my son’s GP, and incidentally, CAMH’s assessment of my family also raised no safeguarding concerns at all. It seems this narrative of parental blame and insinuation of FII suddenly came to fruition after I had made a complaint, and after confirmation of the failings of this NHS Trust. I can therefore only conclude, and believe that I was being scapegoated and gaslighted to allow the NHS Trust to remove accountability for their failings.

I made contact with the Information Commissioner’s Office (ICO) who were in agreement that my son’s records had not been handled appropriately. The NHS Trust were issued an infringement notice, however, this unfortunately made no difference whatsoever to how they proceeded to handle my son’s records, which was predominantly in the same way as they had done previously. The NHS were able to continue to do this without any imposed sanctions.

I was never outright accused of FII, but it became very clear indeed that this is the narrative that was being pushed by the NHS Trust

I took my son’s case to the Parliamentary and Health Service Ombudsman (PHSO). This process also had it’s challenges, however, their investigation resulted in failings being recognised, further failings being pointed out, and also a recognition that documenting case notes months after my son had left a service was not in line with GMC Guidelines for record keeping. My complaint was fully upheld by PHSO.

I was never outright accused of FII, but it became very clear indeed that this is the narrative that was being pushed by the NHS Trust after a complaint had been made, and upheld, about their services and my son’s care. It seems that the default position by the NHS Trust was to deny, defend, to protect their reputation at any cost, and to exercise their power to deflect responsibility by parent blaming instead, because they can, and also without any regard of the damage this could impose on my family.

I thought I was the only person this had happened to

The impact of this experience has been quite profound on a number of levels. My son was left without any care at all and so I had to find alternative care myself which came at a cost. The concern I had for my son’s welfare at this time was great and warranted which was then exacerbated by the NHS Trust’s response to my concerns, and then I was blamed. I wanted to and was willing to work with the system for my son’s benefit, but instead ended up having to fight them just so they would do the right thing, of which they failed considerably. I feel personally violated and demoralised by a system that did not want to listen and then expelled a huge amount of energy trying to discredit me as a parent as opposed to take responsibility for their own failings. I now view medical care to be untrustworthy, but more than that, it has altered my view of approaching services altogether. The burden of ever having to speak to services again, whether it be medical or other services, is unbearable. The knowledge that I have been painted to be somebody I am not just because it suited to do so is an injustice that has been imposed on me and now have no choice to carry. The experience of being consistently and repeatedly gaslighted has also taken a toll that is difficult to explain, but it has left it’s mark and has changed me.

I thought I was the only person this had happened to. I was wrong, but not only that, I have since discovered that it is very common for parents to be actively blamed and accused of FII after raising concerns within systems that are supposed to help. Defaulting to these dangerous and damaging practices of parent blaming to avoid systemic accountability and inducing trauma for families need to be stopped. Defaulting to a culture of denial and defensiveness to avoid accountability also needs to stop.

I support the report on system generated trauma because it is important and imperative that this issue is highlighted, taken seriously, understood in it’s complexity, and that some kind of change is generated from the knowledge and experience of families who have been significantly and unnecessarily traumatised by engaging with the very services that are supposed to help, and to prevent future families from being subjected to such trauma. Families should be able to raise concerns without having parental blame used as a silencing tool, or when things go wrong families should have the right to know the truth rather than be met with fierce and unchecked denial and defensiveness. When I consider what would help with this process, actioning The Public Office Accountability Bill (Hillsborough Law) comes to mind. Decades of cover ups by public bodies have long been documented. Victims of such cover ups are forced to endure the resulting trauma and injustices without regard by the public body that willingly put them in that position. It needs to stop.