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National campaign to get PDA recognised
  • 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
  • RhanHRhanH
    Posts: 848
    Hi Alison, Thanks for posting on the Forum. I think it's fantastic how much support you have been able to generate already and I hope we can continue to help you here.

    I've already been to talk to my MP, Dame Cheryl Gillan, who as I'm sure you know is the current chair of APPGA! I'll also be contacting her again.


    For anyone who has not yet signed this petition please do make the effort, it really doesn't take long and your support could help reach 10,000 signatures. Please also remember to ask your family and friends for support. Thank you!

  • Holly59
    Posts: 2,589

    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



    Hi Alison ,

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

    Can I just emphasise in Scotland a formal diagnosis of ASD -PDA is NOT required it’s needs based . We are waiting for the follow up report from Ministers .

    If you are told a formal diagnosis is required , teachers are in breech of the Additional Support for Learning Act . GIRFEC and the Wellbeing Wheel .

    If any parent requires further information please contact Enquire .

    http://enquire.org.uk/

    I doubt my present MP will be helpful, it’s was thanks to his appaling behaviour on a number of occasions that I landed up Petitioning the Scottish Parliament .

    Pat xx
  • Holly59
    Posts: 2,589
    https://en.m.wikipedia.org/wiki/Homosexuality_in_DSM

    I attended Ruth Fidlers PDA Education Seminar yesterday . I never knew this fact .

    How many years before ASD-PDA is added formally to the DSM.!!!

    Please sign the UK Petition to help families throughout the World .

    Scotland has started the ball rolling let others follow our example .

    Pat xx
  • PDA_ASD_Parent
    Posts: 4,198
    And grief is in the ICD: http://www.icd10data.com/ICD10CM/Codes/Z00-Z99/Z55-Z65/Z63-/Z63.4 "Disappearance and death of family member" (you couldn't make it up)

    Also gaming addiction (!!!): http://www.techaddiction.ca/internet-gaming-disorder-dsm-5.html is being put in the DSM.

    And yet both are behavioural of temporary nature. Yet a specific lifelong neurodevelopmental disorder doesn't get a look-in. Yes, I know they can use the current variety of diagnostic codes in the ICD (or the DSM ASD code) to diagnose PDA as it stands, but the lack of any description of it as a subtype is causing no end of trouble for families where lack of specific recognition of the subtype in manuals is preventing recognition letalone diagnosis.
  • RhanHRhanH
    Posts: 848
    The petition is at 8835. Please keep sharing and don’t forget to sign if you haven’t already!

    https://petition.parliament.uk/petitions/202680

  • Also this one which is specifically about diagnosis, not just recognition:

    "Commission PDA at CAMHS"

    https://you.38degrees.org.uk/petitions/commission-p-d-a-at-c-a-h-m-s

    And yet amazingly only has 628 signatures. Diagnosis is the most important thing!
  • Holly59
    Posts: 2,589
    The UK Petition is now at 9009!

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

    This is the Statemennt from the Scottish Petitions Committee . A report will follow .

    9 November 2017: The Committee agreed to close the petition under Rule 15.7 of Standing Orders on the basis that the Scottish Government is clear in its view that PDA is covered within ASD diagnosis; this position is in line with the international standards of best practice as established in ICD-10 and DSM-5, and is reflected in its national guidance SIGN 145 which has been developed by a multidisciplinary working group which has taken account of the scientific literature and evidence; work is also ongoing in relation to the Scottish Strategy for Autism, and NES has provided additional resources and support tools for the health and social care workforce. In closing the petition, the Committee agreed to write to the Scottish Government to indicate that PDA awareness should be included in the ongoing work on the Scottish Strategy for Autism. Link to Official Report 9 November 2017

    You can watch this on YouTube .

    The SCOTTISH GOVERNMENT is clear in its view that PDA is covered within ASD diagnosis . What the Scottish Government are going to do is to follow up with a report ( no timeline ) , and be included in the ongoing work on the Scottish Autism Strategy .

    The Additional Support for Learning Act 2004 states “ A Formal diagnosis is NOT required,, it’s needs based .

    As long as a Parent recognises that their child has PDA that’s all you need otherwise teachers are breaking Education Laws in Scotland .including the Wellbeing Wheel and GIRFEC ..

    During my research I found evidence of PDA being discussed in the Scottish Parliament since 2006. It’s linked to the PDA Society in the Autism Toolbox for Teachers . The first case recognised in Scotland was diagnosed by Prof Newson at Nottingham in 1998.

    Long term it’s beneficial for lots of reasons to get a formal diagnosis if that’s possible .

    https://www.pdasociety.org.uk/families

    https://www.pdasociety.org.uk/education

    https://www.pdasociety.org.uk/resources

    https://www.pdasociety.org.uk/adult-life

    These are just a few of the links available under the Menu Link .

    fisheralison2018 if you contact me I will help you with information , I have PM you my details .

    Unless you add the Scottish Petition you will get the same “drivel “, it’s not in the Manuals it dosernt exist “ , we received from Ministers at the start of the Scottish Petition . Our Petition is crucial to your evidence .

    Teachers using PDA Stratagies and seeing the results for themselves will add vital evidence to those Clinicians who disagree with PDA .

    https://www.pdasociety.org.uk/professionals/survey-of-professionals

    The PDA survey shows the dreadful lack of understanding throughout the system . Don’t forget most of the Ministers making these decisions have no understanding of ASD whatsoever .

    Pat xx

  • RhanHRhanH
    Posts: 848
    The petition is at 9880 signatures.... could you help make it to the 10,000 mark?

    https://petition.parliament.uk/petitions/202680
  • Holly59
    Posts: 2,589


    RhanH said:

    The petition is at 9880 signatures.... could you help make it to the 10,000 mark?

    https://petition.parliament.uk/petitions/202680



    Did my bit today . Helped Alison with relevant information from our Petition and my research to add to their submission .

    Spoke to her wonderful PDA daughter who made me laugh . She fits the PDA telephone profile .

    Please please keep spreading the word .

    Pat xx

  • Holly59 said:


    Sadly this one

    "Commission PDA at CAMHS"

    https://you.38degrees.org.uk/petitions/commission-p-d-a-at-c-a-h-m-s

    Is still only at 634. I simply can't understand why. Both petitions are equally important and the CAMHS one is about actual diagnosis, whereas the other is about raising "awareness and understanding of PDA among health care professionals". If people can't get diagnoses what good is awareness and understanding? People need to really push to publicise the diagnosis one and get signing and sharing.

  • Holly59
    Posts: 2,589


    Holly59 said:


    Sadly this one

    "Commission PDA at CAMHS"

    https://you.38degrees.org.uk/petitions/commission-p-d-a-at-c-a-h-m-s

    Is still only at 634. I simply can't understand why. Both petitions are equally important and the CAMHS one is about actual diagnosis, whereas the other is about raising "awareness and understanding of PDA among health care professionals". If people can't get diagnoses what good is awareness and understanding? People need to really push to publicise the diagnosis one and get signing and sharing.



    I whole hardly agree .

    Its so frustrating that so many families and adults are affected Worldwide but getting folks to sign is a Petition is jolly hard work as we both understand from the Scottish Petition .

    Remember the old adage , “ Those who say the least do the most “. I also believe that there is so much apathy out there , why bother nothing changes attitude , fed up of fighting , let some else do it attitude I can well understand as well.

    I have been knocking my head against a brick wall trying to get support where the system is set up so so few get it .

    The bottom line is money . If they gave everyone the funding they were entitled too they would be bankrupt .

    If anyone had told me that within 8 months of recognising my two children had PDA I would be sitting in the Scottish Parliament giving evidence to Ministers I would have never believed that within a million years .

    I do believe the significance of our Petition has been massively overlooked somewhat but it has in my opinion kicked the momentum to really push PDA Awareness . I do believe Jane Sherwins book has been a “ lightbulb “ moment for many families and Ruth Fidlers Education book a true lifesaver , both were for my family .

    https://www.pdasociety.org.uk/forum#/discussion/5956/pda-scotland-why-you-do-not-need-a-formal-diagnosis-

    Another thing folks often forget , the majority of folks helping on the PDA Society are PDA parents themselves . It’s not like the NAS , massively Government funded , they can go home of a nighttime and switch off . PDA parents can never do that !

    Looking on the MAP the response from the UK Petition has generally been poor in Scotland . No idea why , considering how many children , families , adults are affected .

    End of rant .

    Please please keep signing all Petitions

    Pat xx

  • I don't understand the apathy. Are people that browbeaten by the system that they have given up wanting to change things? Diagnosis not being recognised is the single biggest barrier to PDA support because they don't believe parents if they say their child has PDA, it shouldn't be that way but it is and it needs to be a documented diagnosis. With diagnosis being recognised as valid, that automatically means understanding and awareness among professionals follows. I don't know if that petition was inadvertently set up with wording that wasn't specific enough, but the fact that there is one that directly targets the key issue, diagnosis, should mean that one has amassed the most signatures. Of course I don't mean that it's a competition, but the key issue needs signatures!
  • RhanHRhanH
    Posts: 848
    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.
  • Holly59
    Posts: 2,589

    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.



    Brilliant news !

    Next target 100,000 signatures .

    Pat xx
  • Worrying though, that Government petitions only have to "respond" after 10k signatures, doesn't mean you will get a response you like!

    This petition https://you.38degrees.org.uk/petitions/commission-p-d-a-at-c-a-h-m-s still only has a 638 measly signatures. Do people realise they can sign both!!

  • Holly59
    Posts: 2,589

    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.



    Although our Scottish Petition has made a massive impact we are still in the same position as the rest of the UK on the Clinicians front . It’s still a Post Code Lottery at present . As I have said “ Teachers are the key element to prove to Clinicians that PDA Stratagies are effective “.

    https://www.pdasociety.org.uk/forum#/discussion/5956/pda-scotland-why-you-do-not-need-a-formal-diagnosis-to-get-support-within-education-and-care-

    This is a “ World “ Petition if people only thought about it .

    I am going to a Meeting next week to emphasie the situation within the Scottish Borders and there will be a local PDA Awareness Day at the end of March.

    We can all do our bit . If you are on Social Media share the PDA Gif too .

    Get a local group of volunteers and ask can you set up a stall in Tescos or Asda ! There are lots of folks not on Social Media or unable to access . Look how many Adults are now realising their issues are due to PDA . So many in fact that a new section for adults has been set up and requests from Adults has overtaken families .

    Pat xx

  • 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.
  • Holly59
    Posts: 2,589

    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.


    Scotland is going to use the AET with a “ Kilt “. The minutes have disappeared !
  • Holly59
    Posts: 2,589
    https://mobile.twitter.com/Autism/status/968147396223029248

    http://www.autism.org.uk/get-involved/media-centre/news/2016-12-07-pda-petition.aspx

    NAS backed our Petition too .

    Why the NAS are not doing more themselves I have no idea .

    Glad I sent you the link Alison .

    Pat xx
  • PDA_ASD_Parent
    Posts: 4,198
    Let's hope now the Government petition has gained over 10k signatures, the response is better than this from the useless Norman Lamb:

    https://publications.parliament.uk/pa/cm201314/cmhansrd/cm140428/text/140428w0002.htm

    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.



    Just found out this petition:

    "Commission PDA at CAMHS"

    https://you.38degrees.org.uk/petitions/commission-p-d-a-at-c-a-h-m-s

    ​is instigated by the same person that set up the Government one. Wonder why the goals are different in each and why the Government one doesn't address diagnosis.

  • Holly59
    Posts: 2,589
    Rather ironic the Scottish Petition was instigated by the Lib Dem’s !!!!

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

    Pat xx
  • PDA_ASD_Parent
    Posts: 4,198

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



    Really? My MP wrote to Alistair Burt about PDA in 2016, so 2 years after Lamb's above response and the upshot of Burt's response was the same as Lamb's. Another prize cop-out with a load of general waffle about autism.
  • PDA_ASD_Parent
    Posts: 4,198
    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!
  • Holly59
    Posts: 2,589

    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!



    Unfortunately a lot of the responses are written by Advisors . My friend in Edinburgh does exactly this for Ministers . Euan Robson does the same . One response I received from a Minister a nine year old could have done better !! The response I have just received from the First Ministers Office was a right load of tosh and sheer Political Spin and didn’t address any of my questions . That came from an Advisor . Hence I have joined FB . Enough is enough . The cases I have helped recently shows no improvement whatsoever , it’s getting worse and fast !

    To be honest I was as ignorant as the next person about the Autism Spectrum till I recognised Aspergers in my boys . Look at the horrendous list of so called Professionals who failed us .

    If you asked folks in the street what they knew about ASD bet only a fraction could answer.

    My main question is why is ASD assessed by Mental Health Services when it’s a Neurodevopmental issue . There should be Neurologists on Multi Disiplinary Teams . Not one of the three Paeds I saw locally recognised any ASD issues . I can’t fault the Nursing Care at Sick Kids in Edinburgh , it was exceptional, the Doctors were lovely too, but again no one recognised any ASD issues and he was diagnosed with two co Morbid issues at that stage . Sick Kids failed to diagnose the type of Epilepsy too.

    I am trying to find out if Sick Kids recognise PDA. It’s work in progress at present .

    It’s sad that the Petition has slowed down after all the hard work these ladies have done . So frustrating .

    Pat xx
  • PDA_ASD_Parent
    Posts: 4,198
    Well even if it was written by an advisor, they will have had to get their facts from the official position, an advisor wouldn't know it's being viewed as attachment disorder etc. Not unless they simply sit there Googling! Considering the crap that comes out of ministers it wouldn't surprise me actually.

    I think re ASD being mental health services is probably because it's to do with the brain and there could be co-morbid mental health conditions.

    Although ASD has brain differences, meaning there are literal physical differences and genes are involved. There are many with ASD who also have EDS which is a physical condition. But the symptoms of ASD come from the brain and involve thought processing, sensory processing etc. so I don't think there is any alternative - they aren't going to make a neurodevelopmental department of the NHS any time soon.
  • Holly59
    Posts: 2,589
    On a positive note it’s now reached 10,906 .

    Hope it reaches 11,000 soon .

    Pat xx
  • PDA_ASD_Parent
    Posts: 4,198

    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.
  • Holly59
    Posts: 2,589

    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.


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

    Our Scottish Petition made a huge impact . Hopefully with all the research I have shared , plus adding in the result from our Petition it will make a difference .

    If you think back a year there was only the odd post weekly from a new member . Since then there has been a surge in both parents and adults visiting the Forum .

    I have PDA meetings booked this month and next in the Scottish Borders to help spread the awareness .

    Think Positive .

    Pat xx
  • PDA_ASD_Parent
    Posts: 4,198
    I try to be realistic...but am more than willing to be pleasantly surprised.
  • Holly59
    Posts: 2,589
    https://petition.parliament.uk/petitions/202680

    The response from Parliament is posted .

    Pat xx
  • PDA_ASD_Parent
    Posts: 4,198
    As you can see, it's a cop-out as I predicted it would be. Whilst they acknowledge PDA is part of the autism spectrum, they refer to NHS NICE who previously considered PDA to be ODD and they make reference to clinicians only diagnosing as per the diagnostic manuals. Well current ASD diagnostic codes would be used anyway, but clinicians would state that the child has the PDA subtype on the diagnostic report.

    So whilst it may sound positive that the Government have stated that PDA is on the autism spectrum, in practice this will mean clinicians will simply say that it's ASD behaviour (some clinicians are already erroneously saying PDA is just a female presentation of typical ASD) and if they deem the PDA child NOT to meet ASD criteria (which children with ASD-PDA often don't, as they use the ADOS instead of the DISCO and there is clinical ignorance regarding PDA), for those children they will say it's parenting and the child won't be diagnosed with anything. So all this response means is that we are no further forward and at best a child with PDA will receive a standard ASD diagnosis which may not even recognise the demand avoidance, at worst no diagnosis at all.

    All the more reason to continue to sign and share THIS petition about diagnosis!

    "Commission PDA at CAMHS"

    https://you.38degrees.org.uk/petitions/commission-p-d-a-at-c-a-h-m-s

    ​This one hits the issue that diagnosis must be right in the beginning, is not reliant on a Government response as to amount of signatures, it can keep going idefinitely and is unrestricted by the rules of the Government petitions website.
  • webbwebb
    Posts: 2,463
    Please read the response on the website from the PDA Society Trustees regarding the Governments response to the Petition -

    https://www.pdasociety.org.uk/blog/2018/03/government-response-is-inadequate

    More info to follow!
  • PDA_ASD_Parent
    Posts: 4,198
    Has the NAS made any official statement?

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