fisheralison2018 said:

Hello, I'm posting on behalf of the national campaign to get PDA recognised by health care professionals. We are working alongside the PDA Society and have the support of Phil Christie.

We only need 1700 signatures to ensure that a government response . is received. Please sign rhe petition today as the.deadline is approaching.
https://petition.parliament.uk/petitions/202680

We are also looking to contact as many Mps as possible to request them to proactively challenge their local clinical commissioning group to direct and support local clinicians on understanding, supporting and diagnosing ASD/PDA

Please comment with your area and MP name if you are willing to support the campaign and submit for your local constituency.

Thanks

Alison

Holly59 said:

The UK Petition is now at 9009!

http://www.parliament.scot/GettingInvolved/Petitions/PE01625

RhanH said:

Huge congratulations to the hardworking team behind the petition to raise awareness and understanding of PDA among health care professionals ... it has reached the 10,000 signatures needed for the govt to respond. You can keep signing & sharing up to the closing date of 20 Apr.

RhanH said:

Huge congratulations to the hardworking team behind the petition to raise awareness and understanding of PDA among health care professionals ... it has reached the 10,000 signatures needed for the govt to respond. You can keep signing & sharing up to the closing date of 20 Apr.

PDA_ASD_Parent said:

As I have said “ Teachers are the key element to prove to Clinicians that PDA Stratagies are effective “.

We had the LA say, upon having been sent a link to the AEHubs PDA educational support document that the strategies were just common sense strategies used in schools anyway, to fob us off from using them.

28 Apr 2014 : Column 450W

(2) what steps he is taking to ensure that the diagnosis and treatment of pathological demand avoidance is not subject to regional variations; [195314]

(3) what guidance he gives GPs and clinical commissioning groups on pathological demand avoidance and its appropriate treatment; [195315]

(4) what steps he is taking to improve the well-being of children and adults with pathological demand avoidance. [195316]

Norman Lamb: Pathological demand avoidance (PDA) is not recognised within either the International Statistical Classification of Diseases and Related Health Problems (ICD) or the Diagnostic and Statistical Manual of Mental Disorders (DSM). As a result, there are no specific recommendations for the diagnosis or treatment of PDA.

In the course of the development of the National Institute for Health and Care Excellence (NICE) clinical guideline on the treatment of autism in children and young people (CG128), the developers looked at differential diagnoses for autism. In this, they did consider PDA, identifying it as a particular subgroup of autism that could also be described as oppositional defiant disorder (ODD). The guidance recommends that consideration should be given to differential diagnoses for autism (including ODD) and whether specific assessments are needed to help interpret the autism history and observations. However, due to the lack of evidence and the fact that the syndrome is not recognised within the DSM or ICD classifications, NICE was unable to develop specific recommendations on the assessment and treatment of PDA.

The Department therefore has no current plans to issue specific guidance on PDA.

However, we would expect the diagnosis, appropriate treatment and well-being of people with autism spectrum disorders to be addressed in plans outlined in both the adult autism strategy, “Fulfilling and Rewarding Lives”, and the recently published update of the adult autism strategy, “Think Autism”.

The strategy and the recent update both clearly recognise the importance of diagnosis as a vital step to ensuring appropriate support and treatment. Since the publication of the strategy in 2010, we have taken a number of steps to support local areas to develop a clear pathway to diagnosis. Health services should have a pathway to diagnosis just as local authorities should have a clear framework for assessing the care and support needs of children and adults with autism. The Department for Education has worked closely with the Department of Health over a number of years to encourage early identification of potential autism and to link this with relevant support in school.

The NICE Clinical Guidelines, “Recognition, referral and diagnosis of children and young people on the autism spectrum” and “Recognition, referral, diagnosis and management of adults on the autism spectrum” recommend the creation of diagnostic leads in every area together with a multi-disciplinary autism group to support the development and delivery of clear, local autism pathways. Our recent self-assessment exercise to map progress locally and nationally with delivery of the adult autism strategy showed that these structures are in place in many areas which should avoid unacceptable regional variations.

If my memory serves me right Norman Lamb has met up with members of the PDA Society since.

PDA_ASD_Parent said:

In fact, just checking the letter it was even worse! He said many clinicians question whether PDA is attachment disorder or personality disorder! And Burt was DoH but said it's the responsibility of the NHS as if that was nothing to do with DoH!

PDA_ASD_Parent said:

Government will respond

Government responds to all petitions that get more than 10,000 signatures

Waiting for 15 days for a government response

What's the betting the response will be "our position remains unchanged since our 2014 position statement...NICE has recently updated the guidance on diagnosing children with autism spectrum disorder and we have committed to all new teachers being given training in ASD before they qualify...yadda, yadda, yadda." Case closed.

Would love to be hopeful, but we've seen it all before haven't we.