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Can PDA Society do this to help with clinical awareness?
  • I thought that perhaps if all the health authorities, specifically the CAMHS in UK (perhaps the CCGs too) were sent information on PDA with recommended guidelines (even if it's just the clinician's booklet) and information on NAS PDA workshops etc. with a request for a response on their current approach to PDA, it might help?
  • Didn't the PDA society do this last year?
  • Really? God...nobody much is listening are they.

    PS, I can't find the bit about accepting private diagnoses in the SEN Code of Practice, I don't suppose you have a section at least to narrow it down?
  • webbwebb
    Posts: 2,565
    Hi Everyone,

    The PDA Society sent a Clinicians Booklet to EVERY -
    CAMHS
    Child Development Centre
    and
    Principal Educational Psychologist

    Thousands were printed and we had a company do a mass mail out!

    We have also been sending Clinicians Booklets out to any Professional who contacts us over the past year since we did the mass mailing.

    We are having them printed again this Spring as supplies are running low.
    There are thousands of them out there!

    I suppose we can send them the Booklet but we can't make them read it or start diagnosing PDA.

    To be honest things have changed over the last 5 yrs! There is far more Awareness of PDA now than there was 5 yrs ago (OR 10 yrs ago when my son needed a diagnosis!)

    THe PDA Society are trying very hard to raise Awareness, through literature, website, Courses and Workshops, Enquiry Line etc - not bad for volunteers who have children with PDA!
  • I think awareness is improving all the time....Huge thankyou to all the committee. Long way still to go.
  • webbwebb
    Posts: 2,565
    Yes, long way to go but "from little acorns big Oaks do grow".

    12 years ago Margo was almost alone in her battle to raise awareness....now she has a team of Trustees, Trainers and Enquiry Line volunteers to help her.

    "More hands make light work"
  • That's brilliant webb. What can be done to get the message through more?

    People like me are in positions where they won't properly diagnose PDA, at best a semi-diagnosis and also they are under the wrong impression that our daughter's presentation is more commonly seen in girls. That reads to me that they don't really see PDA as separate subtype, but just a female manifestation of autism.

    Considering the NAS does training workshops on it and all this official information now exists, there are so many CAMHS not even recognising it at all.

    Progress (despite the wonderful efforts of PDA Society) is painfully slow.
  • webbwebb
    Posts: 2,565
    Hi, The PDA Society is doing all it can considering it's a charity run by Parent Volunteers, we must all do our bit to raise awareness of PDA too.

    See the link below - Imagine what could be achieved if just one person like Jane in each County started a petition!

    Here's the link:
    https://www.change.org/p/north-staffs-clinical-commissioning-group-a-diagnostic-service-for-pathological-demand-avoidance-pda-in-north-staffs

    We can't expect someone else to do it, we have to do our bit too!
    Parent Power can change local policies!

    (I too wish the NAS would do more to raise awareness of PDA)
  • I agree, I have been liaising with my MP and contributed to the draft beta ICD11. I'm by no means sitting on my laurels.

    But organisations have more impact usually due to the branding and you have input from the experts on your side, so they will respect this more.

    I had the email from Jane about her petition and have signed.

    What I meant, was what else could be done, not implying that you haven't done enough.
  • webbwebb
    Posts: 2,565
    Thank you for doing all you can.

    We can all write to our Clinical Commissioning Groups and inform them of a local need to have a PDA Diagnostic Service within our local health authority and start up a local petition to influence the CCG.

    We can write to our MP's and give them plenty of literature on PDA such as the Clinicians Booklet and ask them to get involved with the APPG.



  • Hi things are pretty bad in Northern Ireland with regard to PDA awareness never mind diagnosis. I think what the PDA society is doing is amazing, just wondering if brochures were sent out to CAMHS etc in N.Ireland & if there is likely to be any training/worshops here in the near future. Thanks.
  • webbwebb
    Posts: 2,565
    Hi Everyone

    Just wanted to come back to you all regarding the Clinicians Booklets.

    The "mass mail out" was to all Child Developments Centres, CAMHS and Ed Psyc's in England BUT since the mail out last year we have sent Clinicians Booklets to everyone who has asked for one.
    We have sent some to professionals in Scotland, Ireland and Northern Ireland, plus other countries, when they have requested them.
    We have sold thousands of copies to Parents who have given them to their Clinicians. (Sorry we couldn't give them to parents but the original grant was to supply them to professionals)

    We will be having the Booklets re-printed in the Spring 2016.
    The Trustees will be meeting in March to decide if we can afford to print enough booklets to send to Scotland, Ireland and N. Ireland.

    However, as we are all based in England we would need the help/assistance of a Parent in each of the above countries to help us know where to send the Booklets too.
    We would need a list of the most appropriate places with addresses. Services are not the same in the above countries as they are in England!

    So........if you live in Scotland, Ireland or N. Ireland please could you Private Message me???
    All we need is a bit of your time, we would need you to locate who diagnoses Children with Autistic Spectrum Disorders (like PDA) and where are they based in each area of your country.

    So with a little bit of help we may be able to get the Clinicians Booklets to those 3 countries.

    Watch this space!

  • webb when the mailshot went out originally, was it just the leaflet or was there an covering letter/report about PDA and the research with advice, info on NAS conferences about it etc.?
  • webbwebb
    Posts: 2,565
    Hi, The Clinicians Booklet is a glossy brochure, 35 pages full of information and links.
    It covers -
    1. The history of PDA
    2. What is PDA
    3. A Time line
    4. A Parents Experience Of Living with a child with PDA
    5. What is a Demand
    6. All Research Documents
    7. A document showing the differences between PDA, AS and Autism
    8. The differences between PDA, ODD and Attachment Disorder
    9. What Clinicians can do
    10. AET Guidelines
    11. Criteria for PDA
    12. Diagnosis and Classification
    13. Education management
    14. Quotes from Professionals and list of References
    15. EDA Questionnaire
    16. Links to other charities.
    17. The PDA Society

    Because the Clinicians Booklet covers so many things, we did send a covering letter as to why the Clinician/Professional was receiving the Booklet but we did not feel it necessary to duplicate any info in the Booklet, in the covering letter.

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