SPFT CAMHS Scrutiny and Media Attention

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"A member of the public raised concerns about the assessment and management of children and young people with autism in September 2011. This led to a report that was considered by the Children and Young People’s Overview and Scrutiny Committee (CYPOSC). The Committee requested that a user satisfaction survey be carried out by the relevant services. In December 2012, the Health and Wellbeing Overview and Scrutiny Committee (HWOSC) received the report back from the user satisfaction survey. The Panel held a capacity building meeting on 9 July 2013 to hear from service providers on how the pathways for assessment, diagnosis and support should work. They heard from parents and support groups on 17 September and 19 September 2013 – both in public and private. They held three more meetings on 15 October 2013, 6 November 2013 and 19 November 2013 to hear from service providers and schools." The final report was issued in April 2014, see below.
Bear in mind as you read this, that 1 in 10 children who use CAMHS are autistic. Many autism parents (including this one) gave accounts to the committee of terrible failings by SPFT CAMHS towards their families.
 
"Services for Children with Autism Scrutiny Panel report April 2014"
https://new.brighton-hove.gov.uk/sites/default/files/migrated/article/inline/Final report for Services for children with autism final April 2014.pdf
Some quotes from the above reports:
 
Failure to provide timely, diverse, flexible services to meet the needs of ASC children; services provided frequently ineffective, counterproductive, harmful or reactive; families not included at the heart of the process and left without a voice; inconsistency in support provided even by the same service; and failure to proactively commission services. It is important to state that some parents feel the focus is disproportionately placed on their parenting and some feel ‘blamed’ for their child’s behaviour. A huge amount of damage is done by professionals blaming parents."
"Diagnosis is not a quick as it could be and by the time a child reaches secondary school there is an urgent need for diagnosis." (school governor)
"Diagnosis and misdiagnosis are big issues."
"There is inappropriate and ineffective treatment, often putting the ‘blame’ on bad parenting."
"CAMHS have said that families who get a private assessment must be ‘over anxious’."
"It is important to state that some parents feel the focus is disproportionately placed on their parenting (rather than on their child’s neurodiverse traits) and some feel ‘blamed’ for their child’s behaviour. A huge amount of damage is done by professionals blaming parents. Calling a parent’s ethics and morals into question needs to be eradicated."
"There are inconsistencies in the diagnostic process. This is highlighted when children with Asperger and high functioning autism slip through the net and only get picked up later."
Yet despite all this, CAMHS believed they were more than expert in ASD:
"Parent Carers’ Council and Amaze ran a Talk Health event and suggested that there was an autism specialist on all teams. CAMHS noted that they were happy with the level of specialism they had."
Well you couldn't get much more arrogant could you. I can say hand on heart, being autistic myself and parent to autistic children, in all my experiences with SPFT I saw nothing but incompetence as regards both autism and mental health.
There were media articles about this sorry state of affairs:
‘Harrowing stories’ suggest experts have been failing Brighton and Hove’s autistic children'
https://www.brightonandhovenews.org/2014/04/25/harrowing-stories-suggest-experts-have-been-failing-brighton-and-hoves-autistic-children/ (also at: https://thelatest.co.uk/brighton/2014/04/25/harrowing-stories-suggest-experts-have-been-failing-brighton-and-hoves-autistic-children/)
 
"The report’s introduction, by Councillor Rob Jarrett, said: “The panel heard a number of harrowing stories from people who have children with autism who felt they had been failed by the very services supposed to help them, children who had not received a timely diagnosis or support and who had struggled through school. They were told that some parents felt that they were being “batted away” by CAMHS because their children had some autistic traits but other traits were masked or not easily visible."
'Brighton and Hove parents of autistic children face unfair criticism'
https://thelatest.co.uk/brighton/2013/09/17/brighton-and-hove-parents-of-autistic-children-face-unfair-criticism/
 
"Parents of autistic children in Brighton and Hove have been accused of being poor parents instead of being given help. The habit of blaming parents was highlighted by a support group in evidence to a scrutiny panel at Hove Town Hall. In the same evidence it emerged that more than a third of parents had had to wait more than three years for a diagnosis for their autistic children after first raising concerns. And help and support often depended on a diagnosis by a doctor."
Brighton & Hove Healthwatch later published a damning 2014 report on SPFT CAMHS (nothing had improved in 2016 when we had to use their service, which you can read about on this page)
"Press Release: Local CAMHS put young people in vulnerable position"
https://www.healthwatchbrightonandhove.co.uk/press-releases/press-release-local-camhs-put-young-people-in-vulnerable-position/

"Putting the Pieces Together: An overview of people’s experiences of CAMHS services in Brighton and Hove"
http://www.healthwatchbrightonandhove.co.uk/wp-content/uploads/2014/12/final_draft_with_responses_-_26.11.14_final.pdf
And the media wrote about this too:
'Brighton and Hove children put at risk by experts, health watchdog warns'
https://www.brightonandhovenews.org/2014/12/09/brighton-and-hove-children-put-at-risk-by-experts-health-watchdog-warns/
“Over the past year Healthwatch Brighton and Hove has been hearing talk of dissatisfaction and frustration from parents, young people and voluntary and community sector organisations about the local CAMHS service which has led us to look into it in more detail."

“Not only have young people found it difficult to engage with CAMHS, but parents have also often reported feeling blamed for their children’s behaviour and condition through general staff attitudes towards them or because they were asked to complete a parenting skills course.

“They were also labelled by CAMHS staff as being over-protective or attention-seeking."

“Delays, drift and diagnostic problems in young lives lead not only to great distress for the child and their family, but can affect their whole life in the future."

 
12th August 2015 - The LA's head educational psychologist said to me in a meeting "We all know CAMHS are failing."

An anonymous parent survey report compiled by this author in the latter part of 2016, survey ran from 4.9.16 onwards and this was the result as of 18.10.16 (so only just over a month later), and this was presented to Gill Brooks, the commissioner from Brighton & Hove CCG when I met with her that day. She ignored the results of this survey, despite her telling me at the meeting when I showed her the paper copy, that she would use it for the current consultation she was doing on Brighton & Hove's autism services. I also emailed an electronic copy direct to her immediately following the meeting, as I assured her I would. This FOIA evidences that she excluded these findings. As can be seen from the survey itself, not a single parent said CAMHS therapy for their autistic child was helpful.

So as you can see, from issues raised in 2011, the same problems with CAMHS have kept going. If you look at this page (bottom end), you will also see problems we had with them only last year, in 2019, when in breach of the CCGs children and young people plan, they refused to take an urgent referral for our daughter. This service is beyond appalling. It is quite evident:

  • SPFT CAMHS have no expertise in ASD (or ADHD) and are relying on clinical tools alone to make diagnostic decisions (training in administering such a tool does not equate with autism expertise)

  • SPFT CAMHS staff have a deeply ingrained parent-blame attitude, which may stem from a combination of professional arrogance and deflection of their inadequacy as regards autism knowledge and no interest in learning from parents

  • SPFT CAMHS incredibly do not put the child's needs as paramount and fail to recognise the long-standing detriment caused by their failings (of course you have to recognise you are failing first!)

  • SPFT CAMHS staff have a callous attitude towards families and the detriment on the entire family group, that results from an undiagnosed autistic child who is not supported

  • SPFT CAMHS staff have no expertise in mental health in an autistic child in either how it presents differently to a neurotypical child or in the different therapy required

  • SPFT CAMHS staff fail to recognise the passage of time can have a critical impact on vulnerable children and their families, they lack any sense of urgency or of the need for preventative care to stop problems escalating

  • SPFT CAMHS do not understand masking, high-functioning autism or female presentation of ASD

  • SPFT CAMHS deny that pathological demand avoidance ASD sub-type exists, despite overwhelming evidence to the contrary including official sources

  • SPFT CAMHS staff are ignorant of their legal duties

Note: The ADOS-2 clinical tool is researched to be only 77% clinically reliable (http://www.ncbi.nlm.nih.gov/pubmed/25116834 & https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2864898/ in "high-functioning" autistics, as it was researched entirely on prototypical (classic) autism cases. Additionally, it was researched entirely on males who often present differently to females. The ADOS-2 is also stated by it's authors to only be a part of an autism assessment and not to be relied upon in making a clinical decision (and this basic advice relating to any diagnostic tool exists also in NHS NICE Guidance CG128 1.5.11 "Do not rely on any autism-specific diagnostic tool alone to diagnose autism"). Yet CAMHS do rely on the clinical tools (because they have no expertise in ASD) and don't listen to parents, as can be seen from the parental feedback at the above scrutiny panel, the local media articles and Healthwatch report, as well as what they did with our child.