Sam's response into the Peter Fonagy review in Autism and ADHD

Sam's response into the Peter Fonagy review in Autism and ADHD

https://www.gov.uk/government/publications/independent-review-into-mental-health-conditions-adhd-and-autism-final-report

Hi and Welcome to my deep dive open and living blog document on the new "independent" report into Autism and ADHD delivered to the UK Government and written by Prof Peter Fonagy and team.

Here I shall be deep diving into the following : Who wrote it ? Why wasn't any people with a diagnosis of Autism and ADHD involved ? Why wasn't there anyone with a Mental Health diagnosis involved ? Why was it "Nothing About Us, Without Us" ? , Why didn't they use actual open data from the ICD 11 and the World Health Organization ? Why didn't they use the open data from NHS England that's available and open and - which shows it's all under diagnosed and also under funded ?

If you want to learn more, cite to this open living blog and contact me, please do so via my website at : www.dsoundz.co.uk

Okay.. so now READ ON !!

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lead report writer - who isn't an expert on ADHD and Autism

Yes, my first thought and question is : why aren't any of the report writers experts in Autism and ADHD and Neurodevelopmental conditions ?

Here's Peter Fonagy the main lead for this report. His background is in education and his teaching is in psychoanalysis says his bio on the UCL website here https://profiles.ucl.ac.uk/7792-peter-fonagy/teaching . He works in Therapy which includes CBT. 

CBT is well known to not work if you have a diagnosis of Autism and/or ADHD, there's plenty of research on this.

(more on Peter Fonagy biography below)

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Question : So what is Diagnostic Overshadowing and why did he and his team use this in the report ?

What he did in this new government report was to mix up Autism and ADHD with mental health conditions. This is actually called - Diagnostic Overshadowing and is a form of discrimination.

https://www.local.gov.uk/publications/diagnostic-overshadowing-and-how-it-impacts-people-learning-disability-and-autistic

Definition

The National Institute of Clinical Excellence (NICE) defines diagnostic overshadowing as “the tendency to attribute all behavioural, emotional, physical and social issues to a person's learning disability or a pre-existing condition, while overlooking the possibility that they could be symptoms of other conditions or difficulties. An example would be attributing challenging behaviour to a learning disability when it could be a reaction to abdominal pain, which in turn might be symptomatic of a physical health problem.”

NICE Guidelines : https://www.nice.org.uk/guidance/ng96/chapter/recommendations

Diagnostic overshadowing was first defined in 1982, by Psychologist Steven Reiss. He noted that people with psychiatric needs often have their symptoms minimalised or dismissed as being part of their disability. This prevents thorough assessment of their needs and their needs being appropriately met.

Diagnostic overshadowing occurs when clinicians or caregivers attribute a person's symptoms or behaviors to their autism and / or learning disability diagnosis without considering other potential causes, such as medical conditions, mental health issues, or other neurodevelopmental conditions.

This can particularly affect people with a learning disability or autistic people because their behaviour can be misunderstood. It is important that staff working with people for these groups are aware this could be an issue so that they can avoid misinterpreting people’s behavior.

The NHS has written this report into Diagnostic Overshadowing : https://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/diagnostic-overshadowing-a-growing-concern-for-patients-with-ld/

Okay, So why have I focused upon Diagnostic Overshadowing here ? it's because upon reading the report, it doesn't mention anything about Diagnostic Overshadowing. The report doesn't mention the importance of Diagnostic Overshadowing and why it takes place to people diagnosed with Autism, ADHD and Learning Disabilities.

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Oliver McGowan

In 2016, teenager Oliver McGowan who died at the hands of NHS staff in Bristol, had Epilepsy and Autism and a mild Learning Disability. His disabilities and conditions were ignored by staff. 

Oliver was killed by them.  

And yes, Diagnostic Overshadowing took place!

A massive campaign was launched after Olivers death, and I was part of this, to help lend a voice and to aim to change the laws and to add a new law so that better treatment takes place and that disabled people do not get treated how Oliver got treated and ignored.

You can read about the training here on the NHS / Department for Health and Social Care website : https://www.gov.uk/government/publications/oliver-mcgowan-code-of-practice/the-oliver-mcgowan-draft-code-of-practice-on-statutory-learning-disability-and-autism-training

First hear from Paul McGowan, Olivers mum. Listen to his story - https://www.youtube.com/watch?v=AyXjdsuk1js

Now watch the news broadcasts told by ITN News, Channel 4 News, SKY News and by the BBC

BBC NEWS - https://www.youtube.com/watch?v=Jeg9J8LQTyw

And watch the NHS England animation all about the training - https://www.youtube.com/watch?v=ouhKSOGm49g

RIP Oliver McGowan. Who died as a teenager in November 2016 in Bristol, England at Southmead Hospital, North Bristol NHS Trust.

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SHORT FILM TO WATCH :  LABELS

by Casey Browne

Casey Browne is a Neurodivergent Filmmaker. They have a diagnosis of Autism. They made this short film in 2019 with support from Biggerhouse Film who develop films made by disabled adults with a diagnosis of Autism, ADHD and/or Learning Disabilities. 

  

If the film isn't displayed above, you can watch it one on VIMEO here > https://vimeo.com/321693404

Link to the Biggerhouse Film website > https://biggerhousefilm.co.uk/differentvoices/

The reason I added this important short film to watch is because it's about the Labels we are given when we have a disability such as Autism and ADHD. The film is made by adults with a disability, therefore it's from our own lived experience.

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Did you know that Peter Fonagy is behind this treatment to cure mental health conditions ? yes he want's to cure people with Autism and ADHD.  There;s this company call Anna Freud he is part of and they run training which needs questioning. Here's his profile :

https://www.annafreud.org/training/health-and-social-care/mentalization-based-treatments-mbt/mentalization-based-treatment-adults/the-mbt-team/peter-fonagy/

Biography on : Peter Fonagy

Professor Peter Fonagy CBE FMedSci FBA FAcSS PhD DipPsych

Peter Fonagy is Head of the Division of Psychology and Language Sciences at UCL

He is Clinical Advisor to the UCLPartners Integrated Mental Health Programme, National Clinical Advisor of the NHS England Children and Young People’s Mental Health programme, the Leader of the Mental Health theme in the North Thames Applied Health Research Collaboration and a Senior Investigator Emeritus for the National Institute of Health Research. He has occupied a number of key national leadership positions including Chair of the Outcomes Measurement Reference Group at the Department of Health, Chair of two NICE Guideline Development Groups, Chair of the Strategy Group for National Occupational Standards for Psychological Therapies and co-chaired the Department of Health's Expert Reference Group on Vulnerable Children.

His clinical interests centre on issues of early attachment relationships, social cognition, borderline personality disorder and violence. A major focus of Professor Fonagy’s contribution has been an innovative research-based dynamic therapeutic approach, called Mentalization-Based Treatment, which was developed in collaboration with a number of clinical sites both in this country and in the US. He is currently PI or Co-PI on research grants worth in excess of £15 million. He has published over 800 scientific papers and 300 chapters and has authored or co-authored 25 books. He is a Fellow of the British Academy, the Academy of Medical Sciences, the Academy of Social Sciences, the American Association for Psychological Science, and was elected to Honorary Fellowship by the American College of Psychiatrists. He has received Lifetime Achievement Awards from several national and international professional associations including the British Academy, the British Psychological Society and the World Association for Infant Mental Health.