The QA Questionnaire & Next Steps (2/6)
June 2012 I received a Quality Assurance questionnaire from Richard King at SPFT, asking about my experience three years earlier at the Neurobehavioural Clinic (NBC), which I completed and returned. This moment is crucial, because it was receiving this form, that made me realise I could even question the processes or standard of the assessments I'd had ~ that anything could actually be 'wrong' with them (you trust clinicians, as supposed experts and people in authority also, at least I did in those days), and led me to research how ASD assessments were supposed to be conducted. At the time I'd been assessed, I had no idea about quality standards for benchmarking ASD assessments or guidelines for how they should be performed. This was when I began to educate myself and realised in the following weeks/month, that my assessments had been very cursory and substandard, so it was July 2012 was when I first realised there was any sort of problem and even then, not fully how much.
The NHS NICE CG142 Guidance "Autism spectrum disorder in adults: diagnosis and management" was not in place when I was assessed in 2009 (it was issued 3 years later, in 2012, the year I received the QA questionnaire), however, there was of course a minimum standard that ought to have been complied with irrespective of this and I was able to track down BMJ step-by-step guidance online and realised my assessments had not followed even basic acceptable practice. My assessments had not accessed past/childhood history and neither of them had included any clinical tests either. I had sent them the results of some online AS tests I took myself beforehand, but the clinician dismissed these instantly, claiming they were not validated. Also, during my assessment, all examples of AS traits I expressed were immediately dismissed by the clinician, with comments such as "oh everyone feels like that" without any attempt to analyse my responses in any way. They hadn't even interviewed my husband, who they met, as he took me to and collected me from the appointments - and at the '2nd opinion' they had even gone into the room he was waiting in, closing the door and leaving me in the assessment room, to tell him they hadn't diagnosed me!!
July 2012 I contacted the NBC manager to ask if they would see me again, but they refused. When I said I had found out that my NHS assessments there were not done correctly, the woman replied "that's how they are done". I contacted SPFT's Patient Advice and Liaison Service (PALS) to ask for their help in getting an NHS reassessment because my previous assessments had been substandard and my query was allocated to Claire King, Liaison Officer, to look into.
August 2012 In the meantime, bolstered by having found out my assessments were substandard and still with the ongoing conviction that I had AS, I decided to see someone privately for an opinion. Due to the confidence knock I'd had as a result of my NHS assessments, initially I didn't want to pay for a full clinical assessment because of the cost, only to get the same outcome and have wasted my money. The situation the NHS assessments had left me in, made me think maybe I was deluded for being convinced I had AS and maybe I was just a deficient person who was somehow at fault for being different from others, they had put me in that kind of fear. I found a local non-clinical practitioner Sarah Hendrickx (see left), who has a Masters degree in autism; is an author on autism issues; is a speaker for the NAS and has a training consultancy company on autism. Sarah is endorsed by the world-renowned Professor Tony Attwood who says of her, "Sarah speaks Asperger as a second language", not to mention that Sarah herself has Asperger's and a partner with it too, so I think it's more than safe to say that she knows her stuff. Sarah's AS assessment cost about half that of the minimum cost of a private clinical assessment. She confirmed I had AS. Legally she could not call it a diagnosis as she was not a psychologist or psychiatrist, but she was very knowledgeable and experienced and conducted it the way they do, administering the Adult Autism Assessment (AAA) which is a standard clinical ASD assessment tool (on which I scored very highly). Sarah told me that everyone she had assessed and confirmed, who had then sought a clinical assessment at the NBC, had, as far as she knew, gone on to receive a formal clinical diagnosis.
In August 2012, whilst still researching, I discovered this:
"3.14 Professor Critchley’s team was widely praised for its sensitivity and thorough diagnosis."
~ Imagine how I felt when I read that!! It was a real slap in the face to read that the same clinic who had failed to diagnose me with the same condition after completely substandard assessments, was being praised this way.
September 2012 The confirmation from Sarah Hendrickx gave me the confidence to seek a formal clinical assessment and I escalated my query to a formal complaint with PALS, via Claire King.
October 2012 I was put in touch with Rebecca Simpson, Specialist Nurse Practitioner and Team Leader, who worked at the NBC. We had a telephone conversation and she told me she would be assisting with getting me an out-of-area AS reassessment which would be in Worthing. She later sent me an email saying that she wanted to see me for a "holistic assessment" and she said that mental health was part of her role. I didn't pick up on the mental health reference, as I read it that it was just what she did, in addition to dealing with autism ~ I had no idea she was applying it to myself. She arranged a home visit with me.
15th November 2012 Rebecca Simpson came to see me for a home visit. I had prepared a list of my AS traits to talk to her about. I told her that I'd had my AS confirmed by Sarah Hendrickx and that I'd already had a copy of the report put on my health files. She seemed so very kind and helpful, so I trusted her and was grateful to her for being prepared to help me.
I didn't pick-up that over the following period of time, her emails to me, were laying the ground for labelling me with anxiety issues, by using highly loaded terms such as "it's difficult for you", "feels too overwhelming", "don't be too anxious" and "confusing and distressing for you", preparing a paper trail, for me supposedly being mentally unstable, I thought she was just being empathetic to my situation. As I was actually feeling situationally stressed at the time, due to the battle trying to get the reassessment and facing a wall of resistance (as well as also having had both children referred for assessment for autism due to their difficulties, and having their very challenging behaviours to deal with), I accepted whatever she said at face value and passively allowed her to label me anxious, because I didn't see what she was doing, I even started referring to myself that way, gullibility is part of Asperger's! I thought she was just being sympathetic and kind. I even sent her an email with a flower emoji to thank her for being so kind whilst she was, unknown to me, horribly bad-mouthing me behind my back! That's the thing with autistics, we struggle with understanding peoples' motives and don't usually see manipulation going on in front of our own faces. I didn't pick up on the clues. She coerced me onto anxiety medication, which being gullible, I accepted, not seeing the warning signs.
You see, I found out from a Subject Access Request (SAR), too late, that during this same month, on 26.11.12 they had shut down the autism reassessment that was being arranged, they had forgotten to notify PALS at the time though, so communications were still going on between myself and Claire King, about it being arranged. It's amazing what an SAR will uncover, when you ask for copies of all formats of records, including emails. That's what the labelling and medication was about, it provided them a documented excuse based on a lie.
During my email communication with Claire King (16th November 2012), I emailed her and Rebecca Simpson the results of my childhood EEG, along with several research articles showing my results matched those of autistic children. I asked that these be used as evidence towards my request for ASD reassessment and I believed they were being.
December 2012 - January 2013 Claire King confirmed to me in an email that Rebecca Simpson was arranging for me to be seen for the NHS reassessment in January 2013. Rebecca Simpson was pushing for me to have increased dosages of anxiety medication through my GP, coinciding with the period of time they were in the background, unknown to me, trying to cover things up. I thought she was doing what was right for me, I trusted her. But the increased medication gave me horrible side-effects, restless legs, interrupted sleep, tiredness, full body muscle twitching ~ and inexplicable anxiety episodes! I emailed her and told her I was having these side-effects and the medication wasn't having any beneficial effect on me (of course it wouldn't ~ I wasn't in fact suffering anxiety!) and that I would have to wean myself off it. When I had weaned myself off it, I was fine again, because I had never needed it in the first place. And in the package insert warnings, I discovered - unbelievably, anxiety was a known side-effect! It still upsets me that I had drugs pushed on me by unscrupulous people who knew I never needed them. Later on, I realised that this is what happens in the NHS, they try to discredit people, undermine them and falsely label them (usually with mental-health terminology), as part of the cover-up.
I had a private, full clinical Asperger's assessment with a consultant clinical psychologist Dr Andrew Arthur, who had previously worked at consultant level in the NHS and had over 35 years of experience, as well as having just updated his ASD assessment training, with a colleague of the world-renowned Simon Baron-Cohen, Dr Janine Robinson in Cambridge. He conducted a very thorough assessment, which took place over several days, consisted of several interviews with myself, a telephone interview with my mother (he wrote to her at least twice to persuade her, as we were extranged, until she agreed) and an interview with my husband. He persisted in getting me to obtain any relevant information I could from the past, so I provided copies of school reports, past employment performance appraisals and some relevant evidence from my medical records. He also differentially tested me with a range of clinical tools (listed below) for not only ASD, but also a variety of mental health conditions, psychiatric and personality disorders, some of which could have some traits similar to AS and ruled them all out - I had (and have) no mental illness (ASD is a neurodevelopmental disorder not a mental illness):
He stated that my "profile closely resembles those found in the Ozonoff study" - a cohort of people with Asperger's tested using the MMPI. He formally diagnosed me with AS. Because of what I had been through with the NHS, I still wanted to be absolutely 100% sure (even though his was the second confirmation), so he also subsequently consulted on my case with his colleague Dr Janine Robinson, who is highly expert in this field, being responsible for training clinicians UK-wide in assessment and diagnosis of adults with autism, is "Honorary Clinical Psychologist with Cambridgeshire and Peterborough NHS Foundation Trust" and this highly expert professional verified my diagnosis, making it a total of three independent confirmations of me having Asperger's (as opposed to two very close colleagues from the same NHS clinic, one present at the so-called 2nd opinion, who had clearly discussed my case beforehand!). In January, my younger child was also diagnosed with autism. Autism is known to be a highly heritable condition and many autistic children have autistic parents.
During the time my complaint had been open with PALS, I had sent Claire King the following information: ASD differences in females; sources as to how doctors can become biased and trapped in a viewpoint and much more - but most especially important medical information, such as:
as a child I had epileptic episodes and was sent for an EEG, resulting in an abnormal EEG finding (which I found research showing my result correlated with results in autistic children);
I have a sibling with schizophrenia which according to research confers on me a 300% risk of having ASD;
having two diagnosed autistic children (heritability);
having professional confirmation of ASD following assessment.
I emailed Rebecca Simpson asking about the Worthing reassessment and when it would be, she was due to visit me at home. She replied cancelling the arranged appointment and said she had emailed Claire King about the assessment date ~ this was bizarre as Claire King had already told me that Rebecca Simpson was arranging it. But of course unknown to me they had already put a stop to it two months before without telling me. So clearly Simpson was avoiding me as she knew this and knew that I didn't and would put her on the spot asking what was happening and when I would be seen.
Shockingly, I then received an email from Claire King (PALS) apologising for the "misunderstanding", but that she had never meant that an AS reassessment was being arranged, that she had meant a general mental health assessment! She said that Rebecca Simpson had referred me to a "recovery team" in mental health services (to recover from what exactly!). To say I was flabbergasted was an understatement. It was Kafkaesque in the extreme, my whole complaint to PALS had been about obtaining an AS reassessment, I had been told, in answer to specific questions about when the AS reassessment would be, that it would be in January ~ there was no ambiguity or lack of clarity on this and Rebecca Simpson had told me it would be in Worthing. Until she had told me this, I had no idea there was an ASD clinic in Worthing. Now they were trying to pretend I had misunderstood?! (See this page for the proof) It was like one of those films in the olden days where the husband would play tricks on the wife to make her think she was going crazy, and I felt confusion that perhaps there was something I had missed - it never crossed my mind that they were corrupt. But I didn't need any mental health assessment, as my mental health was fine (as proven by the raft of tests conducted by Dr Arthur) and why would someone be sent out-of-area for a mental health assessment! Claire King wouldn't discuss it further, simply told me I could take my concerns to PHSO (the reason for that becomes obvious when you read what PHSO did with my complaint...).
As a result of the PALS email, I rang Claire King and she told me it was because of funding (another lie), so I asked who was responsible for funding and she told me Alison Rhodes, General Manager in Specialist Services, who I then contacted regarding my situation. This resulted in an application to the funding panel for approval of funding for out-of-area reassessment. I didn't realise at the time that this would be a sham funding panel and a foregone conclusion. It would just be a way of trying to make it look like they had done the right thing, they could document that they had 'followed a procedure', in case I escalated the complaint to PHSO. This was in the days when I trusted professionals and didn't join the dots about how much corruption there is in the NHS and other organisations. Rebecca Simpson was asked to submit the application to the funding panel on my behalf and I sent her a copy of my private diagnostic report to include in the application along with other back-up information. I told them that if the Trust would recognise my (legally valid) diagnosis I wouldn't need the funding for reassessment. When I had emailed Alison Rhodes, I had reported bias and lack of independence as part of my complaint, because of Medford's presence at my NHS 2nd opinion, as part of the rationale for the reassessment. Alison Rhodes contacted Medford and Critchley regarding his presence and was told that they denied his presence completely, they totally lied about this, she wrote to me in a letter that it was "clear he was not there".
During this time my other child was also diagnosed with ASD. Again, with it being highly heritable, and there being none on my husband's side of the family, this still further strengthened my case for having it myself. The evidence was already overwhelming anyway.
February 2013 the funding panel sat, and refused my request. The reason they gave being:
"This decision was based on the fact that both Dr Medford and Professor Critchley are highly qualified specialists in their field with a great deal of expertise in working with Asperger’s Syndrome and neither of them believes [me] has a diagnosis of Asperger’s Syndrome. It is a condition of Panel’s Operational Policy that funding is only authorised in cases where there are no resources within the Trust to provide appropriate support or intervention and where local services endorse the request for funding for an external provider because treatment is not available locally."
So even though their assessments were substandard, just having letters after their names was enough to let them off the hook and even though the Brighton & Hove clinic had refused to assess me again and I had supposedly imagined that the Worthing clinic would reassess me, they said that local 'treatment' (diagnostic assessment) was available, when it was not available to me. It was also detrimental to my request that I was not allowed to put my own case to the panel, I had a lot of evidence to present, and despite requesting it several times in writing, Rebecca Simpson never sent me a copy of the application form she submitted (it was about me after all). She brushed me off with excuses and wouldn't provide it (I later found out why this was...). I wanted to be sure she had included all the vital information I had emailed her, to put forward the best case possible and I only had her word that it contained the right information and was a compelling case. I had also made it very clear that if the Trust would recognise my private diagnosis I would not even need funding for NHS reassessment, but they wouldn't do this either. It transpired that Rebecca Simpson hadn't (for reasons unknown) provided my private diagnostic report to the panel in her submission, even though I had emailed and faxed it to her in plenty of time for it's inclusion. Because I contacted the panel about this, they said I could appeal to the next panel. I still held on with hope for justice and remedy.
March 2013 the following funding panel sat but simply repeated their previous decision in a rubber-stamping exercise and advised me to go to the PHSO if I was unhappy with their decision ~ the keenly typical NHS fob-off. I asked the panel a list of questions about the logic of how they had reached their decision and whether they had looked at the information I had submitted, to enable me to have the full facts to take my complaint to the PHSO, which they refused to answer despite me explaining to them that this disadvantaged me in taking my complaint to PHSO. Bear in mind also, as an autistic person the confusion and stress this caused me, all the ways they were treating me, were tantamount to deliberate psychological abuse. During the communications, Alison Rhodes had entirely contradicted herself by saying in an email (these are in chronological order): "Panel are not judging the validity of any of your diagnostic assessments" which I queried, because how otherwise could they have reached their decision, leading to this reply: "You are right; the funding panel does consider that the two assessments you had with Dr Medford and with Professor Critchley were valid." then this: "Diagnostic opinions will often differ and none of them may be necessarily wrong - panel is not saying that the NHS is valid and the private ones are wrong, what they are saying is that they won't authorise funding for another assessment." A Kafkaesque see-saw (when even this evidence was provided to PHSO, they ridiculously tried to explain it away by saying it was the same thing just said in different ways). So even though I had a superior weight of evidence that the NHS had failed to diagnose me with a condition I do have, they still refused to accept it, preferring instead to accept their own non-independent NHS opinions. The NHS Constitution duty is to put patient's wellbeing first, SPFT can't have got the memo...
April 2013 Claire King of PALS told me they were officially closing the case, paradoxically because it was "based on clinical opinion" ~ which was the actual thing I was complaining about! She had told me on the phone I would have an out-of-area reassessment and Rebecca Simpson had also told me in person this would happen. It had all dragged on for 7 months and the outcome was simply inexplicable. The corruption behind this became evident later on, when I obtained copy files through SARs and found out how they were all bad-mouthing me together like a nest of vipers. One of the horrors I discovered was Rebecca Simpson saying in an email reply to our GP about me: "I have absolutely no idea how she has your email!! I certainly wouldn't inflict that on anyone! I have found - as have others - the only answer she gets is no..." She also falsely stated I was "a very unwell woman", who was "crippled with anxiety" and more, all to discredit me as part of their cover-up. Disgusting lies from someone supposedly in the caring profession.
Even if they had genuinely believed I was suffering with 'severe anxiety' - aren't they supposed to be compassionate, supportive and caring? Instead of maliciously gossiping and trying to discredit the patient when they make a valid complaint?
May 2013 I enlisted the help of a charity advocate who contacted the manager of the NBC, who told my advocate that for SPFT to recognise my private diagnosis"...would undermine their own Professional Expertise by validating opinions that were somewhat in contradiction of their own clinical findings..." (he emailed this so I have proof) so their refusal was basically to save their own faces. This was despite their own assessments having been completely sub-standard and my private assessment having been extremely thorough, NICE-compliant, incorporating interviews of people who knew me, testing and differential assessment, none of which applied to theirs. They also told him that "NICE Guidelines are only Guidelines – they do not form a legal duty to provide the services advised". This is a lie as it's law that they have to follow NICE as has been tested in court and it's also in direct contravention of the NHS Constitution, which states that "Patients come first in everything we do." and "We strive to improve health and wellbeing and people’s experiences of the NHS." The NBC manager also told my advocate in regards to the autism care pathway, that Sussex Partnership NHS Trust “do not provide a structured pathway”. It's a breach of the Autism Strategy 2010 which requires all Trusts to offer all autistic adults an Autism Care Pathway (see NICE CG142 1.8.3)
Never mind that NICE Guidance does not state that a patient's diagnosis has to be an NHS one to access associated services (psychiatrists and psychologists undergo the same qualifying training for their respective role whether they are private or NHS and some work in both sectors, many private are ex-NHS!). Or that the Trust had also completely contravened NHS rules, which state that private diagnoses must be and are recognised (which I had also had confirmed in writing by PALS):
Incredibly, this is SPFTs ethos...
I then sought justice through the Parliamentary Health Service Ombudsman (PHSO), but as you will read, none came...