The Impact on My Life (6/6)
The impact of the Trust's refusal to accept my diagnosis has been enormous. Because of them denying I am autistic, my (long-since ex) GP who was very autism-ignorant, tried to portray me as mentally-ill instead, in collusion with SPFT, but following my private assessment diagnosis, he had finally noted my Asperger's diagnosis on my health records and asked SPFT in writing to support me with an Autism Care Pathway. But because they replied that they did not believe I had Asperger's, he then claimed it was a "controversial" diagnosis. I later found out, he had maliciously bad-mouthed me in internal emails to other professionals. He said for example, that I was "obsessed" with autism and projecting my obsession onto our children, causing our children anxiety and more. I was proven correct when all of us were independently diagnosed with ASD. Purely for seeking assessments for conditions I knew we had, this was me being mentally-ill apparently. He also refused to allow me reasonable adjustments in accessing healthcare with the practice, even though I still would have been entitled to them, even if I had not been autistic but had been mentally-ill as he seemed so determined to portray. I sought help from the EASS, MIND and Healthwatch and all of their efforts proved fruitless. I ended up having to change GP practices. I found out what the ex-GP had said about me through a Subject Access Request and it was shell-shocking. He was unbalanced in the extreme, he had emailed other professionals, to say that even though we had left his practice he could still try to 'remain involved'! The far-reaching effects of the Trust's failures on not just myself, but my family, have been huge. I have suffered suspicion, malicious libellous gossip, disability discrimination, misjudgement and misrepresentation by professionals from other public services, because of lies put on files about me, which has led to unwarranted and inappropriate interventions in my family, causing lasting trauma to all of us.
Not only that, but the ex-GP made unprofessional comments to my new GP, regarding my Asperger's diagnosis, falsely claiming I had "diagnosed myself"! My unrelated healthcare was then detrimentally affected due to the Trust's failures (and is still being until the present day), when I sought a referral for assessment for a connective tissue disorder, Ehlers Danlos syndrome (EDS - which it's my strong belief was made more severe by all the stress and trauma they put me through, as beforehand it was mild enough so as to be barely noticeable), the new GP treated me very disrespectfully and contemptuously in front of a witness, who was so incensed that she subsequently complained on my behalf, without me saying anything. I obtained a very grudging referral for EDS assessment, but when I saw the NHS rheumatologist, he too treated me disrespectfully and abruptly, in front of the same witness, bizarrely challenging my Asperger's diagnosis when it was not even remotely his field of expertise ~ and he didn't diagnose me with EDS. I couldn't understand why I was being treated so badly, so I requested a copy of the GP's referral letter to the rheumatologist and was horrified to see that the GP had regurgitated the wrongful and disrespectful statements of the ex-GP in the letter, for this entirely unrelated health issue! The NHS rheumatologist had informed me, that if I wanted to know if I had EDS I should seek a private opinion. I was forced to do so, despite his department being responsible for NHS diagnoses of EDS (as stated on their website!) and I subsequently saw the world-renowned rheumatologist, Professor Rodney Grahame who diagnosed me with EDS. This was the second condition I'd had to get diagnosed privately as a direct result of this Trust's negligent actions. I then spent a whole year battling to get reimbursed for the almost £500 this cost me, which was eventually done by the hospital without admitting liability, supposedly as a "goodwill payment" for the time it took to deal with my complaint about the rheumatologist!
I have been caused serious emotional distress and invalidation as a person, this Trust denied me an explanation for the causation of my differences and difficulties, an ongoing stress burden caused by their failures and rejection. Trying to get them to recognise their failing, resulted in me suffering a very severe stress-induced episode of vertigo in August 2012, rendering me barely able to walk and suffering episodes of complete visual loss, my (then) GP informed me it was stress-related and it resulted in an ambulance being called, because I had moments of literal blindness and was unable to stand. I thought it was a stroke. This episode left me completely sofa-bound for three days and sleeping upright on the sofa for several nights, during which my husband had to cycle home from work daily, to bring lunch for myself and the children as I was unable to stand to prepare food. I was put on medication to treat the vertigo and it is still affecting me today, seven years later. This is what they did to me. I eventually was assessed for a stroke by the NHS, which thankfully it wasn't. I found out what it was myself and this was subsequently confirmed by the NHS, it was vestibular migraine, which the most common trigger is stress! Since this massive episode I have suffered chronic vestibular migraine which I never did before.
During the time I was complaining to SPFT to get an ASD reassessment (before I was privately diagnosed), they coerced me onto anxiety medication that I never needed. Rebecca Simpson did this in collusion with my ex-GP. This medication in fact is known to cause anxiety (which I found out later) and it did this to me, she got the dosage increased and it gave me several very bad side-effects (all these underlined):
They knew that I had no mental ill-health as this was stated in my ASD diagnostic report very clearly, which they had several copies of. Yet they persisted in drugging me, being vulnerable and naive I believed they were acting in my best interests. I ended up weaning myself off this medication and was back to normal. And what they did with this medication is stated on the Government's website as harm to a vulnerable adult and is therefore potentially criminal:
It is also against NHS NICE CG142 Guidance for autistic adults:
My Human Rights have been seriously breached in all this too and they have never once said sorry to me for any of it.
I have also been caused a lot of out-of-pocket expenses, as their ongoing denial of me being autistic resulted in me having to obtain more and more proof in a bid to get them to admit it. Because of how I was being attacked by professionals with false aspersions against my parenting, I had to also pay for private support for both children, in total I had to spend about £4,500.00. Of course SPFT denied being responsible for all of it.
Both my children are autistic and this same Trust was involved in assessing our eldest child, that's another disaster story, because they entirely disrespected me, ignored my parental evidence and tried to blame me for her difficulties, muttering about supposed safeguarding behind the scenes. The refusal of this Trust to admit I am autistic, which would have been a documented ASD risk factor for our child, of relevance in her assessment (ASD is highly heritable), was detrimental to her assessment conclusion too. Rebecca Simpson was in contact with them about me (clearly repeating the lies about me being mentally-ill) without asking or obtaining my consent. I was denied reasonable adjustments in communications with CAMHS when our child was assessed and they ignored vital written information I was sending them about her ASD behaviours in preparation for the assessment, because I had been bad-mouthed by the GP and mental health services in the same Trust, which also detrimentally affected her assessment outcome (she had to be diagnosed at a 2nd opinion out-of-area which I had to write a detailed application for, more stress). She lost vital months of support and healthcare and it was disastrous for her when she began secondary school without any recognition of her condition or SEN support. Who was it that ended up having to support her mental health and virtual breakdown? Me of course.
I ended up developing chronic fatigue syndrome because of the battles I was put through, so now have a constellation of health problems (which warranted a blue badge and in a phone call once with DWP they told me they categorised me as "incapacitated"), which all started because of the ongoing distress and stress they put me through. People only have so much fight in them, having to battle children's services for the support both our children needed, whilst being denied reasonable adjustments I am entitled to, because everyone has been denying I am autistic due to SPFT's failings and corruption, having to defend myself against misjudgement, lies and discrimination, it all adds up and takes a huge toll. I have been made into a non-person, because the biggest part of who I am has been denied by them. I have also lost complete trust and faith in so-called professionals and learned that the law means nothing to these people.
I have suffered a barrage of false accusations against my parenting, resulting in false child protection accusations causing huge trauma to my whole family. To have a whole group of professionals ganging up against you, lying about you, terrified you are going to lose your children and having to defend yourself, with nobody listening, even when you provide proof, cannot be described in words. That investigation was seven months of serious trauma. My physical health was very badly affected and I had to go to hospital and undergo an extremely painful procedure without anaesthetic in the middle of this nightmare, as a result. SPFT were invited to take part in this child protection fiasco, as our eldest child had been seeing CAMHS for her anxiety and they delighted in regurgitating their false claims within the professional network and attended a child protection strategy meeting, at which they stated that I did not have Asperger's syndrome in front of multiple professionals and also falsely claimed that my eldest's child's ASD was "really mild" (the same ASD that they failed to diagnose and was diagnosed out-of-area by the Maudsley).
It has only been in the immediate past, that my current GP finally coded my Asperger's diagnosis onto my health records, when I challenged her to put in writing that she did not recognise my Asperger's diagnosis and why. It's amazing how they will stick together to fail a patient, in complete breach of the NHS Constitution until they need to protect their own back. Yet even though it's on my health records, SPFT has to date still refused to recognise it and offer me an autism care pathway and PHSO assists them in their negligence.
The stress this whole situation has caused me has been absolutely intolerable. I have been fighting for justice for over eight years from a failure that occurred eleven years ago (as at July 2020), whilst trying to juggle parenting two special needs children, who both have significant difficulties and a lot of very challenging behaviours, with my own disabilities, without the support I should have had. My healthcare is negatively affected to the present day by the decision of this Trust, which has caused me massive ongoing work and stress, which hasn't ended to this day. Yet still they persist in breaking the law and failing utterly in their duty of care, knowing I am a disabled carer.