Sam Allen, CEO Sussex Partnership NHS Foundation Trust's Role in the Cover-Up
Read this page to see what happened with previous CEOs, Lisa Rodrigues and Colm Donaghy. Never losing hope of some honesty, of one of these people being different, I contacted SPFTs current CEO Samantha Allen on Twitter in December 2018, as she was the second new CEO since the time SPFT had failed to diagnose my Asperger's. I Tweeted her that SPFT were not recognising my private autism diagnosis (which they are not allowed to do - see below for proof). She offered to look into my case, she said she would review my file, she followed me on Twitter. I explained to her that her my SPFT file was full of lies and she wouldn't find the truth there and that I could prove the assessments were clinically substandard and why. I also sent her a couple of pieces of evidence of their lies over email, regarding me having been offered a reassessment, to show her the corruption that I had endured. My goal was to finally have my private diagnosis recognised by them and offering of an autism care pathway.
I gave her a bullet-pointed summary of everything over email, and I asked her to request evidence of anything I reported had happened, as required. I wanted her to see I could back everything up, that I was credible about what I reported. She confirmed by email that she would, but then in the event she didn't - but made her decision anyway, having relied solely on what was on my file (despite me having warned her it contained lies and that I could prove what I was saying) saying she saw nothing wrong and that was it! (And she then unfollowed and muted me on Twitter). This is the email:
She then offered a meeting with her to listen to my experience (which was for appearances only) in connection with their services. Seeing this as my chance for rectification finally, I agreed to this and the meeting took place on 24.4.19. I took along an advocate and witness from MIND charity and also audio recorded the meeting. I read out everything SPFT had put me through, using a question format, regarding the breaches of law, the lies, the distress - asking if she thought it acceptable that all of these things had been done to me. I brought along various proofs of being autistic, not only my clinical diagnostic report, but an irrefutable medical brain scan report that contained graphics of my brain, with a letter from the doctor, stating the results were "well known to be consistent with Asperger's syndrome". I don't think she expected how well prepared I was, it was like a court case. I had a list of 32 questions and she asked me what solution I wanted. I told her that I wanted recognition of my Asperger's diagnosis and offering of an autism care pathway. She did not at any time say this would not happen, in fact she seemed amenable, she said she would reply to my questions by end of May 2019. Remember, I had audio recorded the meeting. At this meeting, Samantha Allen demonstrated gross autism ignorance, by referring to an autism care pathway that all NHS Trusts are legally required to provide, as "just a meeting".
Afterwards, I received a letter dated 30.5.19 from senior nurse called Justine Rosser (who had sat in on the meeting) instead of Samantha Allen as promised, which completely ignored my questions, said things that were incorrect (e.g. that I had asked "to be given a letter confirming a diagnosis of Asperger’s" which is incorrect, I asked them to write formally recognising my private diagnosis), completely disregarded my existing valid diagnosis and the incontrovertible medical evidence and said they would offer me an ASD 2nd opinion (which I believe was only done anyway because MIND had witnessed the meeting)! Well I already had a so-called 2nd opinion in 2009 from them, Why now, when they had reneged on their offer of a further reassessment seven years previously and then misled PHSO about it - and they know I have a valid diagnosis and proof of being autistic already? This also totally breaches NHS rules which say:
NHS rules on private diagnoses (http://www.nhs.uk/chq/Pages/2572.aspx?CategoryID=96&SubCategoryID=226) "You shouldn't need to have any of the same tests twice – for example, to diagnose or monitor your condition. In this case, the test will probably be part of your NHS care and the result will be shared with your private care provider if necessary."
and http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_096576.pdf "Private consultations If you’ve had a private consultation for tests and diagnosis, you can still have treatment on the NHS. Your position on the NHS waiting list should be the same as if your original consultation was on the NHS.")
I also ask, would you trust the motives of an organisation which had lied and let you down so much? Would you trust that their offer was genuine and wouldn't be used in an attempt to reconfirm the falsehood that I am not autistic, to in some way, try to negate or override my existing valid private diagnosis? They also know that a total of three independent professionals have confirmed my Asperger's diagnosis, against two colleagues from the same SPFT clinic, who had discussed my case beforehand and the first one sat in on the so-called 2nd opinion, so is this a numbers game?
I replied to Justine Rosser's letter on 31.5.19, pointing out the discrepancy between what was agreed at the meeting and reminding them of their legal duties. I also asked three questions about the Medical Director she said had reviewed my case. My private assessment could not have been more thorough and I reminded them that I had showed them irrefutable brain scan evidence at the meeting. I mean, how much proof is someone supposed to obtain that they are autistic, this is ridiculous. I also have several other diagnosed conditions that are related to ASD (including ADHD which was diagnosed after this meeting but which I told her I had been referred for) - and this was reported to them at the meeting with evidence! Anyone else would have just a single clinical diagnosis and SPFT would accept it, e.g. if they were from another area where they were diagnosed and then moved into this area, SPFT wouldn't reject their diagnosis would they. I have an absolute ton of multi-disciplinary evidence and they are still doing this to me! I asked whether they found it ethical to offer to reassess me when I have the diagnosis already, that NHS rules require them to recognise it and the Autism Act 2009 requires them to support me with it.
Justine Rosser then sent me a second letter dated 13.6.19, the letter contained a provably bare-faced lie about what had been said at the beginning of the meeting, about the intentions of the meeting. I have the audio recording so can prove it's a lie. The letter also falsely stated the issues I was seeking to be addressed had already been looked at. The issues have not already been looked at, because SPFT had refused to investigate my new complaint about their failure to recognise my private AS diagnosis (for which I had new qEEG evidence) and PHSO never investigated this either, as they shut it down, after telling me it would be investigated, because of SPFTs lie. Still no reply to my questions either. She said they can't change the diagnosis which is not what I was asking them to do! I replied to her letter on 26.6.19, telling her I needed to think about her letter and also asking her four questions, relating to their offer of a reassessment. To date they have not responded to those questions (or the three questions from my letter of 31.5.19, or the 32 questions asked at the meeting which I was promised a reply to), which is NHS maladministration according to the Department of Health. I then made a second reply on 3.7.19, pointing out SPFTs breaches of law and that they had failed to answer the 32 questions I had asked at the meeting, or the questions I asked about the medical director, as well as the lies in her letter.
On 10.7.19, I then received a third letter from Justine Rosser, bizarrely claiming I had a "differential diagnosis" because of SPFT not diagnosing me and then me getting a private diagnosis. She clearly doesn't know what differential diagnosis means. She said that I was seeking to have past issues reinvestigated which was untrue. This was clearly an an attempt at diversion, to excuse their failure in addressing what we discussed at the meeting. I wasn't seeking a complaint reinvestigation, but the current issues dealt with. I have been communicating with SPFT about the current situation as they are breaking multiple laws at the current time and failing in their duty of care. Autism is lifelong, my condition isn't going away and their duty towards me is current - the longer they deny me my rights, the more they have failed me. She again totally ignored the outstanding questions they hadn't answered and my incontrovertible medical evidence, as well as SPFT not being allowed to ignore my diagnosis. She also said they hadn't heard from me about the reassessment. So I replied on the same day, pointing out SPFT had made no diagnosis, so it couldn't be a differential diagnosis situation! I pointed out all the issues that had never been investigated and I also told her I was awaiting replies to my questions as without those I couldn't make any decision about the reassessment.
I also copied the email replies (30.5.19, 26.6.19, 3.7.19 and 10.7.19) I had sent to Justine Rosser to-date along with another copy of the 32 unanswered questions, to Samantha Allen (to her direct email) on 19.7.19 asking her to deal with it, as Ms Rosser hadn't replied to my email of 10.7.19 and also so she could see the lies that had been told (as if she didn't know) and she didn't reply. Her PA replied on 22.7.19 confirming receipt and saying I would receive a reply in due course.
Instead, getting more bizarre by each letter, I then received a fourth letter (running into more than two pages) again from Justine Rosser, on 30.7.19, with a list of bullet-points, dragging up my past complaint about their 2009 assessments and making more factually incorrect statements - and still not replying to any of my questions. She said they were unable to offer further comment on historical issues, which is not what I was asking them to do! I replied to her on 31.7.19, (again) pointing out the irrelevance of the content of her letter and correcting the multiple factual falsehoods within it and I never replied another reply, from either Justine Rosser or Samantha Allen.
So in summary, Samantha Allen failed to request the evidence from me that she promised to request for her review. She failed to answer the list of 32 questions I read out at the meeting on 24.4.19 and sent her electronically, that she promised to answer, as proven by an independent witness and audio recording. She failed to answer the three questions I asked about her medical director and my additional question about the ethics of what they were doing, in my letter of 31.5.19. She also failed to answer the 4 questions I emailed her on 26.6.19 about their offer of a reassessment, knowing that I was unable to make a decision about it as a result. She had Justine Rosser write to me instead, who wrote provable lies and factual inaccuracies in her letters and never responded to any of the points in my replies. Just kept repeating falsehoods and referring to historical issues (that was irrelevant to the current issue, of them failing to adhere to the Autism Act 2009, Autism Strategy 2010, Think Autism and statutory guidance as well as NHS Constitution rules and my human rights). She is breaching NHS rules on private diagnoses and ignoring incontrovertible medical evidence. She is ignoring my patient needs and the detriment to me, especially bearing in mind what her Trust has put me through for eleven years and having seen evidence of her staff's lies. She is continuing to break the law and deny me appropriate care and support.
NHS NICE CG142 on assessing, diagnosing and supporting adults with autism www.nice.org.uk/guidance/cg142/evidence/full-guideline-pdf-186587677 (which has been tested in court, they must comply) "Offer all adults who have received a diagnosis of autism (irrespective of whether they need or have refused further care and support) a follow-up appointment to discuss the implications of the diagnosis, any concerns they have about the diagnosis, and any future care and support they may require." and the personalised plan required is here: https://www.nice.org.uk/guidance/qs51/chapter/Quality-statement-3-Personalised-plan
One of the laws Sam Allen is also breaking (and I believe this is a criminal offence), just like her predecessors did, is this:
"The Health and Social Care Act 2008 (Regulated Activities) Regulations 2014"
"Receiving and acting on complaints
16.—(1) Any complaint received must be investigated and necessary and proportionate action must be taken in response to any failure identified by the complaint or investigation."
In failing to answer my questions, Sam Allen and her staff are also committing NHS maladministration as per the DoH definition on this:
And statutory guidance says this:
So Samantha Allen is not only not auditing the Neurobehavioural Clinic, but when a victim of their failings proactively contacts her with evidence of a problem with their assessments, she isn't interested. She says she will ask for the evidence, doesn't do so - and then without knowing anything about the standard of the assessments, she says she sees no problem! Clearly she isn't interested in service user feedback or rectifying a problem. Rather like an ostrich. Only it's not even about ignoring the issue, it's about covering it up, otherwise why would I receive SPFT letters with lies in?
And how do SPFT staff propose to comply with my need for autism-related reasonable adjustments that they are legally obliged to, if they refuse to recognise my ASD diagnosis?