Sussex Partnership NHS Neurobehavioural Clinic Statistics ~ Proof of Failure


As you will see in this 2014 FOIA, there's something up with Sussex Partnership NHS Trust's (SPFT) ASD assessment service.

https://www.whatdotheyknow.com/request/statistics_for_the_asc_neurobeha#outgoing-562583

These are screenshots taken directly from the FOIA:

Forty-four assessments per year for seven years, is 308 assessments. (to the current date it's 14 years which is 616 assessments) So a rate of 10% were not diagnosed (30 people - if the rate is still the same, then it's about 61 people to-date), which is quite a high rate of missed diagnosis, considering the vast majority of the period in question (6 out of 7 years) all referrals were via the mental health pathway. Do SPFT's mental health clinicians not know how to recognise ASD? Prior to referral, there are screening tools such as the AQ10 which was published in 2001, six years before the Neurobehavioural Clinic opened. And primary care referrals, means people went to their GP and requested referral for assessment (the AQ10 is also used as a GP screening tool). Most people have researched the reason for their difficulties and discovered ASD and recognised they have the traits and I would therefore imagine a high percentage of them would be correct in their belief. It's in the very nature of high-functioning autism to research and go in-depth on a topic and analyse. So in my view, you would expect a lower percentage not to be diagnosed, I would say 2-3% at most (and those being because they have another condition which has some similar traits which has been flagged as possible ASD). Each autistic person denied a diagnosis is denied appropriate support they are entitled to in law, in accordance with the Autism Act 2009. And if they are still conducting ASD assessments the same substandard and noncompliant way they did with myself, then clearly there is great cause for concern. The manager of the Neurobehavioural Clinic wrongly told my advocate that they didn't have to follow NHS NICE guidance, so they don't even know the law.

I would also ask why there are so many more people being referred via primary care (GP's and therefore in most cases self-requesting) as opposed to half as many via mental health (therefore referred by mental health professionals). Around 70% of autistics have co-morbid mental health issues because of struggling with no recognition or support for their ASD and when their ASD is undiagnosed, are often in mental health services being treated for the wrong thing, or for a secondary issue such as depression or anxiety, or one of the known co-morbids. So why are mental health services lagging so far behind self-requested GP referrals we could ask? They claim the reason is:

But this doesn't add up. The same amount of people would have been suspecting they were autistic, it's just that they would have come through a single available route as opposed to one of two possible routes. Is the real reason that SPFTs mental health service are blocking people from being referred, possibly preferring to treat them as having a mental illness and doping them up on medication? Rebecca Simpson did that with me, she coerced me onto Sertraline when she knew I didn't have any need for it, leaving me with horrible side-effects - ironically one of which was anxiety, the very thing I never had, that they had falsely labelled me with.

SPFT say that since 2013:

This specialist practitioner is/was Rebecca Simpson, the specialist nurse who worked with the Neurobehavioural Clinic and who I personally saw, who lied to me and took part in the collusion and cover-up of what they did. Her role is mentioned in this scrutiny report (page 3). Seeing as she failed to recognise that I am autistic, when she visited me and I read out a list of my traits and she subsequently received a copy of my private diagnosis report, should this dishonest and inexpert person be triaging people for autism assessments?

NHS NICE states:

"1.2.16 Consider obtaining a second opinion (including referral to another specialist autism team if necessary), if there is uncertainty about the diagnosis or if any of the following apply after diagnostic assessment:

• disagreement about the diagnosis within the autism team disagreement with the person, their family, partner, carer(s) or advocate about the diagnosis • a lack of local expertise in the skills and competencies needed to reach diagnosis in adults with autism • the person has a complex coexisting condition, such as a severe learning disability, a severe behavioural, visual, hearing or motor problem, or a severe mental disorder."

Yet SPFT stated in their response:

So SPFT are breaching NICE guidance which they are not allowed to do as has been tested in a court of law and this applies to around 61 people they admit to not diagnosing following assessment. It is unethical practice, to withhold this information from individuals who may in fact be on the autistic spectrum, despite the assessment findings, and are vulnerable and therefore may struggle to understand what to do next to resolve the situation (no clinician can claim a 100% success rate) and may need support to understand and pursue their full rights to a correct diagnosis, according to the Autism Act 2009 and Autism Strategy 2010. See below for evidence that not only do they not advise people of their rights when they disagree, but they do the opposite and manipulate them to accept the outcome.

Following my own SPFT assessments, I had no idea I could even question the opinion or quality of the assessments until 3 years afterwards when I received a QA questionnaire and they denied me a proper 2nd opinion, by getting Medford's colleague from the same clinic (bearing in mind the "clinic" consists of those two psychiatrists and use of an assessment room at one of SPFTs mental health sites, with access to a speech and language therapist if required) to conduct a so-called 2nd opinion, after having obviously discussed my case beforehand with Critchley and Medford sat in on the '2nd opinion'! Is a doctor really going to undermine his colleague with him sitting there?!

And SPFT are lying through their teeth also:

Not a single clinical tool was used in my two 2009 assessments (read about this here), for either ASD or any other condition (ASD assessments are supposed to be differential and if someone isn't diagnosed with ASD you would expect their difficulties to be correctly diagnosed). In fact, incredibly, Critchley claimed in writing that clinical tools are only for research!! Yet despite this, they labelled my sensory processing disorder symptoms as "anxiety" a label which has followed me round causing me a lot of trouble ever since. And they failed to diagnose both my ASD and my ADHD - both conditions this clinic is specifically there to diagnose and they failed to diagnose my sensory processing disorder, in their "multi-disciplinary" assessments. I had all three conditions diagnosed elsewhere.

I came across someone online on an autism forum, that was on the waiting list for the Neurobehavioural Clinic, who said they were telling people that were referred, that unless they could provide childhood information from their parents, they couldn't be assessed. This is also in direct contravention of NHS NICE (Section 1.2.5 of CG142 where it says "where possible") (but then you will see here that the clinic, wrongly, don't believe they even have to comply with NHS NICE!). I sent them an email about this breach and they suddenly stopped saying this to people. If they are so inexpert that without childhood history they don't feel confident to diagnose, this speaks volumes.

And I can catch them out in another bare-faced lie here too.

As you can see, Simpson emails her manager, the PALS complaint administrator and Bettina Stott SPFTs Worthing ASD clinic lead on 21.11.12 and admits to managing vulnerable people, to accept the ASD assessment outcome when they don't diagnose them. This is the total opposite of what they must do according to NHS NICE CG142 and is totally unethical and corrupt, bearing in mind they are failing to diagnose autistics and have been conducting substandard assessments! NHS NICE CG142 says they have to inform people of their right to another opinion if the person or their family disagree with the outcome! So clearly, these are people who did disagree, otherwise why would they need to be "worked with" to "accept" the opinions?!

And after all this, imagine that this service, having been running for seven whole years and having a 10% failure to diagnose rate (308 assessments between 2007-14 = 30) so 30 people could potentially have been autistic and denied diagnosis. SPFT told not a single one of these vulnerable people that they had a right to a second opinion if they disagreed (breaching NHS NICE CG142) and only one complaint (mine!) was made in that whole seven years out of 30 people. Between 2007-2020 the figure equates to approximately 61 people.

 

As well as the above evidence that they are manipulating vulnerable people to accept the outcome, I can prove with two pieces of evidence below, that there have been a lot more people dissatisfied with their assessments than myself and this also further proves that they are not advising people of their rights when they are dissatisfied with the outcome and are instead convincing them to accept the outcome, because otherwise more people would be making formal complaints!

You see - a "growing body of complainers" who "are not receiving the diagnosis"

"individuals are requesting second or even third opinions due to not getting their desired assessment outcomes".

So WHERE are all the formal complaints about this then? As you see they admitted above, there aren't any except mine. And that's BECAUSE they are MANAGING VULNERABLE PEOPLE to accept them FAILING TO DIAGNOSE them as Rebecca Simpson's email PROVES!

 

So, for the final cherry on the cake... In their 2017 SPFT "Partnership Matters" newsletter in which their Worthing ASD clinic lead Bettina Stott (the person who they told me would reassess me in 2014, before they reneged and lied to me) says: "At the moment I think staff are a little bit scared of autism and I want to change that." (P21). I don't know about scared of it, in my experience they are incompetent at it. Interestingly, the newsletter also says: "That’s where Bettina Stott comes in. She is the Trust’s only Autism Spectrum Condition (ASC) specialist practitioner." (P20). So as that's the case, they are admitting the Brighton Neurobehavioural Clinic where they send so many adults to be assessed (and who failed to diagnose me - twice), is not ASD specialist! So what I said in my blog post about the credentials of Dr Nick Medford and Professor Hugo Critchley, who run the Neurobehavioural Clinic, is proven absolutely true in SPFTs own words. Critchley and Medford are trained in and focus, on other areas, not autism. Added to the fact that SPFT admits the NBC does not follow NHS NICE Guidance CG142, further evidenced by their substandard assessments in my own case, a clear picture is built. SPFTs Neurobehavioural Clinic is also committing NHS maladministration according to the DoH definition, as regards 9/13 bullet-points:

And SPFT are not only failing to take action over provable incompetence and cover-up at their Neurobehavioural Clinic, but when an individual goes to them with proof, right to the CEO, they simply ignore it.

As you will also see from another FOIA, SPFTs CAMHS are no better with autism:

https://www.whatdotheyknow.com/request/healthwatch_brighton_hove_camhs