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Scottish Parliament PDA Petition. PEO 1625 .
  • Holly59
    Posts: 2,263
    Hi,
    Just a quick update .

    Our submission is in the list to be assessed that it meets the necessary regulations .

    Petitions are extremly busy at present but hopefully it won't be too much longer . Our submission had to be in by the 8th September .

    Once our submission is available to view I shall receive an email first .

    Spoke to Euan and he reckons November for the next hearing .

    Pat xx

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

  • [-O<
  • Holly59
    Posts: 2,263
    Hi,

    Our latest submission is online to view .

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

    We don't have a date for the next hearing at Holyrood . Will let you know when we do .You can view online. Euan reckons there is a possibility of November for the next hearing .

    Euan Robson and I wish to thank Paula Webb for her support, and also providing additional information for our submission .

    Stephen at Petitions has been brilliant . They are extremly busy at present . I explained due to the NAS PDA Conference , the important Sheffield Meeting and other developments all over the UK we would appreciate if our submission could be viewed before the 12 th October .

    http://enquire.org.uk/blog/shanarri-how-enquire-supports-wellbeing

    http://www.gov.scot/Topics/People/Young-People/gettingitright/national-practice-model/observing-recording

    http://enquire.org.uk/20100622/wp-content/uploads/2011/07/parents-leaflet.pdf

    Thank you .

    Pat xx

  • PDA_ASD_Parent
    Posts: 3,855
    You are a force to be reckoned with Pat and well done to all who have supported you with this.
  • Holly59
    Posts: 2,263

    You are a force to be reckoned with Pat and well done to all who have supported you with this.



    So many people have helped including yourself . Your support has been amazing (*)

    Pat xx
  • PDA_ASD_Parent
    Posts: 3,855
    I think I've just been a very tiny spoke in the wheel, you've had real input from people like Geraldine, Paula Webb, Euan etc. but you are the true hero for doing it! =D>
  • gerry
    Posts: 45
    I totally agree with PDA ASD Parent, it is you who is the true hero [b]PAT[/b], you have managed to raise the PDA profile beyond all expectations through sheer grit, determination and many, many hours of hard work and I never give up attitude. Very well done.

    Geraldine XX
  • Holly59
    Posts: 2,263

    gerry said:

    I totally agree with PDA ASD Parent, it is you who is the true hero [b]PAT[/b], you have managed to raise the PDA profile beyond all expectations through sheer grit, determination and many, many hours of hard work and I never give up attitude. Very well done.

    Geraldine XX

    l

    Thank you Gerry and PDA -ASD -Parent . It's been teamwork . Without your 'in house ' training ladies I would never have been able to do it .

    Your sheer dedication Gerry , those 3 am emails to contacts you have made over the years , just an amazing response . You have missed your vocation Gerry , First Minister would be more appropriate . You could charm anyone with one of your emails .

    It's just so wonderful that you can talk to other parents who really understand the issues .

    It's my boys bravery and determination that keeps me going . They are the true " Stars " .

    Pat xx

    (*) (*) :x :-*

    PS one of the tweets from today's NAS PDA Conference .


    PDA Society
    PDA Society @PDASociety
    ·
    4h
    Dr Judy Eaton: PDA IS A THING ... research using cognitive, sensory & communications data from >200 assessments will be published #pdaconf

    Absolutly brilliant , that's exactly what's required .
  • PDA_ASD_Parent
    Posts: 3,855

    Dr Judy Eaton: PDA IS A THING ... research using cognitive, sensory & communications data from >200 assessments will be published #pdaconf



    I could weep reading that, what with the crap attitude I am getting from my LA and CHUMS right now.
  • Holly59
    Posts: 2,263

    Dr Judy Eaton: PDA IS A THING ... research using cognitive, sensory & communications data from >200 assessments will be published #pdaconf



    I could weep reading that, what with the crap attitude I am getting from my LA and CHUMS right now.



    PDA Society
    PDA Society @PDASociety
    ·
    5h
    Dr Judy Eaton says most important message from #pdaconf is to ensure everyone knows that PDA is real, sad not many clinicians here though!

    I have heard of a Clinician today working horrendous hours . This Clinician recognises and diagnosed ASD-PDA .

    It's the Post Code Lottery that's infuriating .


    Sara Lawler
    Sara Lawler @saralawler
    ·
    8h
    Are we teaching 21st C children with 20th C methods? Phil Christie #pdaconf
  • Holly59
    Posts: 2,263
    I can totally relate to this quote . Learn something new every day .

    River @Liariv
    ·
    7h
    I think my favourite thing I've heard all day is "praise is often seen as pressure to perform as well again" #pdaconf

    It's amazing what one can learn just reading through all the tweets .

    Pat xx
  • Holly59
    Posts: 2,263

    Dr Judy Eaton: PDA IS A THING ... research using cognitive, sensory & communications data from >200 assessments will be published #pdaconf



    I could weep reading that, what with the crap attitude I am getting from my LA and CHUMS right now.


    If that's an example of some of her work how many have been assessed privatly ? . Look at the waiting list for the ENC . Just begins to prove how may undiagnosed and not recognised PDAers there are out there . So many are unable or can't afford a private diagnosis and it's a real challenge to get an out of area referral .

    Love and cuddles .xx

    Pat xx
  • PDA_ASD_Parent
    Posts: 3,855
    Gather ye troops! **==
  • Holly59
    Posts: 2,263
    http://www.bbc.co.uk/news/uk-scotland-south-scotland-41667572

    This subject was highlighted a few years back by another MSP .

    http://www.bbc.co.uk/news/uk-scotland-south-scotland-34527068

    From our experience at Andrew Lang CAMHS the only thing they diagnosed accurately between the three children involved in the Petition was my youngests Aspergers .They failed to recognise blatent ADHD , now has ADD in him . It took nearly a year of messing about and cancellations to get that diagnosis . It's the only thing CAMHS and I agree on , " Why didn't they refer the youngest " , then a member of staff renagued on the issues being all the way through in the school reports at a meeting the Care Commissioner said should take place .

    You wonder why we landed up Petitioning Parliament .

    Pat xx
  • Holly59
    Posts: 2,263
    Just received from Parliament

    .Your petition 1625: Wider awareness, acceptance and recognition of Pathological Demand Avoidance Syndrome will next be considered on Thursday 9 November 2017.



    The meeting papers for this meeting will be published on Monday 6 November via the link below:



    http://www.parliament.scot/parliamentarybusiness/CurrentCommittees/petitions-committee.aspx



    You are not required to attend the meeting, but you are of course welcome to observe proceedings from the Public Gallery. You can book a seat in the Public Gallery through the Scottish Parliament’s Visitor Centre, by telephone: 0131 348 5200, by textphone: 0845 270 0152 or by email: visit@scottish.parliament.uk.


    Alternatively, you may wish to watch the broadcast of the meeting on the internet or to follow the petition’s progress from the information available on the Parliament’s website.



    Following the meeting, we will notify you of the outcome of the Committee’s consideration of your petition by e-mail and your petition webpage will be updated.



    Please contact me, or a member of the clerking team, should you require any further information.


    We will be informed which room and a time in advance so people can watch the proceedings .

    Pat xx
  • PDA_ASD_Parent
    Posts: 3,855
    Fingers crossed there is some action. [-O<
  • Holly59
    Posts: 2,263
    A quick reminder that the Scottish Governments response will be on line sometime tomorrow and the Petition will be discussed at Holyrood on Thursday 9 th .

    Those details will be available tomorrow as to which meeting room and approximate times so you can watch the proceedings live . It is recorded so it will be available to watch later.

    Pat xx
  • Holly59
    Posts: 2,263
    Hi,
    Sorry for the delay . Stephen at Petitions has worked all morning to fix the issue .Absolute " Star " .

    http://www.parliament.scot/parliamentarybusiness/CurrentCommittees/petitions-committee.aspx

    If you scroll down to page 27 the submission is available to read .

    https://www.scottishparliament.tv/

    Date: 20th Meeting, Thursday 09 November 2017Location: David Livingstone Room (CR6)

    You will be able to watch this live but unfortunately it depends on how long the previous discussions take .

    https://mobile.twitter.com/SP_Petitions

    Pat xx
  • Holly59
    Posts: 2,263
    https://www.scottishparliament.tv/meeting/public-petitions-committee-november-9-2017

    The Petition is discussed around 11.10 .

    The Scottish Government have decided to close the Petition as our aim to spread the awareness and recognition in their opinion has been achieved .

    A report will be will be published by the Scottish Government in due course .

    Euan and I are considering our next course of action . The report once published can be used to further the ASD- PDA cause .

    The door has been well and truly opened .

    http://enquire.org.uk/20100622/wp-content/uploads/2011/07/parents-leaflet.pdf

    Don't forget in Scotland you do NOT need a formal diagnosis to receive education support for your child . They are in breech of Education Laws , the Additional Support for Learning Act , the Wellbeing Wheel SHANARRI , and GIRFEC if they say you require a formal diagnosis . This also applies for the home situation .

    From the Petition .

    1.6 We also wish to emphasise as we say in 1.3 that in our view there are responses to those presenting the types of behaviour which actually are counter productive and make matters worse. Accordingly one of our motivations is, and has always been, to ensure that this type of situation can be much reduced for the benefit of all concerned. The Scottish Government would also appear to be in breech of the GIRFEC and SHANARRI principles if it allows a situation where the wrong therapies are applied.

    Can I sincerely thank the PDA Society for supporting us , especially Paula Webb .

    Gerry and PDA-ASD _Parents support was incredulous , just amazing .

    The Petition is now closed and the written response should be online by the 15 th if my memory serves me right from the Committee x

    Pat xx
  • Holly59
    Posts: 2,263

    This is what the Scottish Govenment should have done but other groups have started themselves by organising a Working Party in Lanarkshire .

    will start with Lanarkshire first as the diagnostician will be leading the group. Then the hope is the model will filter through to other councils. The initial meeting will be a pretty heated debate amongst professionals but we were talking about adding a few guest contributors at the following one so if you are interested let me know ... Due to current work loads the invites will go out for January .

    We are now aware that the Autism Academy UK will recognise and diagnose ASD-PDA privately

    Although not recognised by the PDA Society formally as yet , it just opened recently , as far as I am aware it's the first place in Scotland to give a private diagnosis .

    http://www.autismac.com/services/

    https://www.facebook.com/autismacademyuk/

    It's still very much a Post Code Lottery who will recognise and diagnose PDA within the LA .

    Pat xx
  • Holly59
    Posts: 2,263
    http://www.bbc.co.uk/news/uk-scotland-41415560

    Remember the Sepsis Petition , after The Petitions Committee rejected the Petition they had to do a U turn three weeks later after a public outcry and help from a National Newspaper .

    Just saying ........

    Pat xx
  • Holly59
    Posts: 2,263
    This is a very special Thank You to Cllr Euan Robson of Scottish Borders Council Kelso . Can I also thank Michael Moore and Jim Hume of the Liberal Democrats who have followed my case through .

    Euan Robson helped bring in the Additional Support for Learning Act during his time as a MSP for Roxburghshire . I met Willie Rennie in Duns during his Campaign trail and he suggested after listening to my story that Euan Robson should be involved . I invited Mary to come and meet Euan and explain her Story over what had happened to her daughter .

    Scottish Borders Council have NEVER replied to Ministers as requested .

    We now have the situation where Adult Mental Health Services have given an ASD-PDA diagnosis to a young man in September in the Borders the first as far as we are aware yet CAMHS have not given a diagnosis to a child .

    There are still huge mountains to climb as to support in both Education and Social care . Euan Robson from Kelso and Kris Chapman from Peebles , Lib Dem Councillors have been working to engage with other Cllrs to spread the awareness of PDA . I am helping a local support group Charities and other interested Parties spread the awareness .

    A number of the issues have never been addressed from my original Complaint so hopefully I will be returning to Parliament in the near future with another Petition about Education Laws , Teacher training and College funding .

    There are still Petitions lodged with the Scottish Parliament referring to ASD -PDA issues such as restraint , Social Workers and vaccines .

    I hope more support groups will be set up in Scotland . It's great to hear that people are being trained to help support the PDA Society give advise to others in Scotland .

    Watch this space for our next stage of this Petition to follow through the issues !

    Thank you to everyone who took the time to add a submission to Parliament and to sign the Petition .

    If you have t already could I possibly ask you to sign this UK Petition and consider the following Consulations emphasing ASD-PDA .

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

    Pat xx











  • gerry
    Posts: 45
    I would just like to congratulate Pat and Mary in successfully raising awareness and recognition of PDA with the Petition.

    You have worked your socks off Pat and have without doubt achieved what you set out to do through sheer determination, grit, guts and a fighting spirit William Wallace would have been proud of! (no offence to our friends in England).

    Having got to know you over the course of the petition, Pat, I know this is only the first round in your fight to get PDA recognised by clinicians. You can be extremely proud of yourself.

    If you ever need a chat or anything, I'm here, just pick up the phone.

    I wish you my very best wishes for your continued success.

    Geraldine.

  • Absolutely agree, Pat has done amazingly, single-handedly as well. (*)
  • Holly59
    Posts: 2,263
    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

    "the Scottish Government is clear in its view that PDA is covered within ASD diagnosis; "


    The full report will be posted later today which is a transcript of the actual meeting . It also offers us the opportunity to return in a years time under Parliamentary rules to follow on the same Petition if we wish to do so .

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

    Keep signing please , the UK Government is next .

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

    It's taken me about three years to get to this stage . I never gave up fighting to expose the truth and that's still ongoing . I feel proud of what I have achieved but at a cost to my family that's unbearable
    to come to terms with .

    My biggest challenge is to forgive those who tried and failed to silence me , who refused to listen and support me and have caused such distress and damage to those closest to me .

    Remember what Ruth Fidler and Phil Christie quote " Listen to the Parents " .

    To the Parliamentary Petitions Team " Thank you for listening " .


    Pat xx
  • Hi Guys, I'm part of the working party within Lanarkshire, good news this week. Head of Education Inclusion is on board and keen to get team within the working party so it looks like its going to be a pretty positive move forward with all sectors involved in discussions. Lanarkshire recognise PDA as an extreme demand avoidance profile of Autism and the numbers they have indicate that, as we all know, PDA is currently under diagnosed. The view is that crucial discussions will improve understanding, increase diagnosis and also raise understanding on the correct use of appropriate strategies. Really proud to be a part of this move forward and looking forward to starting in January. This move is starting to raise interest in other areas and hopefully others will follow suit. Michelle x
  • That's positive news. It should also be recognised as a distinct ASD subtype so that it can be diagnosed correctly, what is holding some people back is that it's not separately described as such in diagnostic manuals. But it is an ASD so can be diagnosed using one of the existing diagnostic codes for ASD. It's really positive that Scotland is increasing awareness as England needs a kick up the jacksy in that regard.
  • Holly59
    Posts: 2,263

    Hi Guys, I'm part of the working party within Lanarkshire, good news this week. Head of Education Inclusion is on board and keen to get team within the working party so it looks like its going to be a pretty positive move forward with all sectors involved in discussions. Lanarkshire recognise PDA as an extreme demand avoidance profile of Autism and the numbers they have indicate that, as we all know, PDA is currently under diagnosed. The view is that crucial discussions will improve understanding, increase diagnosis and also raise understanding on the correct use of appropriate strategies. Really proud to be a part of this move forward and looking forward to starting in January. This move is starting to raise interest in other areas and hopefully others will follow suit. Michelle x



    Hi,
    I had a long meeting yesterday at Edinburgh College about our experience of the system . There needs to be massive training on both ASD and PDA on all levels .

    I was horrified to find out in Scotland that a teacher can refuse Autism Training . That loophole should have been closed years ago especially that the majority of children are mainstreamed . That the awareness of PDA has now increased a teacher can refuse the training required . You also have the other issue due to massive funding cutbacks that teachers have been refused training .

    How many LA are demanding a " Diagnosis " when you don't need a formal diagnosis ? How many teachers have broken Education Laws ?

    Thank goodness for the upcoming Webinar about Education . This is why the Petition evolved , teachers breaking Additional Support for Learning Act, failure to refer , ,illegal Exclusions GIRFEC , Wellbeing Wheel and so forth . Those issues have never been addressed , I have followed through at all levels so I can show Parliament I have tried all avenues open to us therfore I am returning to Petition about those issues .What we need to emphasise in Scotland that a formal diagnosis of PDA is NOT required under the ASL act . It's needs based . The Wellbeing Wheel emphasises that they have a duty to protect a child's mental health and to make a child feel safe and well nurtured . For that PDA Stratagies must be used . We also must emphasise that Mainstreaming does not work in so many cases of PDA .


    The issue is at the present moment there is no system to check which teachers are upholding these Laws by my experience and when they do no one including Scottish Ministers , LA , SGTC would take responsibility .

    I was fobbed off to Enquire and Govan Law Centre . My experience of the system has been LEADScotland have been outstanding in their support . It's still ongoing over DSA and SASS funding .

    I am also returning to Petition Parliament over DSA issues . At BTEC level there is very little funding for support , so many Students can't make the transition because of it . DSA SASS funding in our case has been disastrous . What I have explained yesterday to the College is PDA Students think totally outside the box , forget the one system fits all .

    The only thing CAMHS and I agree on is why wasn't the youngest referred . He was excluded for months from Nursery without any paperwork , the eldest excluded from S6 illegally without any paperwork , they refused to let him sit his prelims , refused him an education he was entitled to therfore he failed his exams . This young man will at this present time spend his life on benefits but I am determined to find answers to support him .

    He was horrifically burnt on a hand in a technical class due to SBC not doing much after the previous accident . They were dishonest to the Public on TV after been massively fined due to a serious accident at Galashiels Academy and said " Lessons had been learnt " . No they had not , it took a second accident before a massive review took place . What did SBC tell the Judge in the first case ?

    Sick Kids failed to recognise the type of Epilepsy , Aspergers or PDA . As I said in Parliament , " Is it not time to worry " . The blatent failures by so many Professionals in the three children's cases involved in Parliament beggars belief .

    We now have the situation where as far as I am aware that Adult Services have just given an ASD-PDA diagnosis in the Borders to an eighteen year old and as far as I am aware CAMHS so far don't recognise PDA .

    The response to the Petition by the Scottish Autism Strategy Team was an absolute disgrace . That a Consultant would will give a diagnosis and Director of a ASD Charity who recognises PDA were on the Committee that responded I am at a total loss for words .

    The amount of LA that could have responded who didn't and no suprise that SBC no response from them , where this Petition started .

    I have been promoting Autism Academy UK on this Forum and your Working Party . That's exactly what the Government should have done .

    There needs to be Legislation behind the Autism Strategy . Not one of the Stratagies or Policies worked in our case.

    As I said in Parliament the only system that works effectively in Scotland is the System to cover up the truth .

    I have been offered the chance to work with a member of staff at SBC due to my mums " PHD in PDA !
    Yesterday Edinburgh College have asked would I do the same .

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

    The response from Scotland including my area has been generally poor to this UK Petition . It's an opportunity not to be missed . It shows you on the map how many votes for each area .

    I would love to give my house keys to Nicola Sturgeon and Theresa May and give them first hand experience of living with PDA . How long would they last ! I had a husband on a heart transplant list , anorther son with a glandular fever type illness poorly for two years plus these two children to look after .I received no practical help whatsoever . In the end it has been me a scatty , honestly I am , who worked all the issues out . I just had to get someone to believe me . My SW has abandoned me and I still get no practical help , just " winging it " day by day . That I am in poor health makes no difference .

    It's the bravery of my two sons who gave their permission to talk about their cases and their amazing bravery to overcome such difficulties that me me determined never to give up .

    Why did it take two Mums to highlight this issue to the Scottish Government ? There have been so many missed opportunities over the years all all Levels . PDA is in the Autism Toolbox and is linked to the PDA Society .

    You now have the Governments response to the Petition for your working group . . We must emphasise in Scotland that a formal diagnosis is NOT required for both support and Education . We must also close this loophole where a teacher can refuse ASD training .

    When Euan Robson asked me who I tried over those years I said " Apart from the Queen , Pope and the fairies at the bottom of the garden everyone" but was passed from pillar to post . So many Charities won't speak out because their funding is direct from Governments .

    It was Mary's article in the press that highlighted me about PDA . I asked her to come and talk to Euan about her case .

    Euan and I have worked together on the Petition , I have explained all the issues as we have worked on the submissions , he words it Parliamentary terms ! There have been a group of people behind the scenes who have worked with Euan and myself whose support has been amazing .

    There are so many issues unanswered at present . My biggest worry is what happens after my death ? People just don't appreciate the complexity of the situation .

    If as much effort was put into covering up the truth as to getting an accurate diagnosis for my boys we would have had a diagnosis years ago .

    Well done Michelle , you show the Government how it should be done .

    Pat xx












  • Holly59
    Posts: 2,263

    Hi Guys, I'm part of the working party within Lanarkshire, good news this week. Head of Education Inclusion is on board and keen to get team within the working party so it looks like its going to be a pretty positive move forward with all sectors involved in discussions. Lanarkshire recognise PDA as an extreme demand avoidance profile of Autism and the numbers they have indicate that, as we all know, PDA is currently under diagnosed. The view is that crucial discussions will improve understanding, increase diagnosis and also raise understanding on the correct use of appropriate strategies. Really proud to be a part of this move forward and looking forward to starting in January. This move is starting to raise interest in other areas and hopefully others will follow suit. Michelle x



    There were so many people who failed to sign or comment on our Petition to Parliament . I totally agree with one Grandmothers quote of " Educate , Educate , Educate " .

    Where do you start in the NHS with Clinicians who don't recognise PDA ? No doubt you read the survey the PDA Society did a few years back with Clinicians . A strong cup of Coffee required before you read that one .

    If at any stage it would help and you were ever in Edinburgh I can show you some of my paperwork . It would make a great training package ! PM me if that would help .

    I am going to the Scottish Autism Strategy Consultation Meeting in Edinburgh on Wednesday and have submitted a response to the Consultation . I didn't hold back in my views !!!!!!

    http://autismnetworkscotland.cmail19.com/t/ViewEmail/t/DF76907F91744FA0



    Take care .

    Pat xx
  • Holly59
    Posts: 2,263
    http://autismnetworkscotland.cmail19.com/t/ViewEmail/t/DF76907F91744FA0

    If anyone could possibly find the time to attend one of these Consultation Meetings especially PDA parents to share your experiences so the Government understands the issues involved .

    It's open to both parents / Carers and Professionals at different meetings .

    You MUST register first . The link to register at each location is at the foot of the page .

    Thank you .

  • What we need to emphasise in Scotland that a formal diagnosis of PDA is NOT required under the ASL act. It's needs based . The Wellbeing Wheel emphasises that they have a duty to protect a child's mental health and to make a child feel safe and well nurtured. For that PDA Strategies must be used. We also must emphasise that Mainstreaming does not work in so many cases of PDA.



    This is also a double-edged sword in some respects. It's the same in England, EHCPs are needs-based. But because there is a culture of not believing or listening to parents, a parent's expertise in their own child is ignored. Hence the culture of sending them on parenting courses rather than assess ASD. So if a child with ASD or ASD-PDA masks in school, the parent telling the school and the LA that their child is in difficulty will be ignored. There needs to be safeguards built in to the 'needs-based' definition. It cannot only be when a professional has put on a piece of paper that there are those needs that the child gets the support. When they stop falsely accusing parents of MSBP/FII and emotional harm, then children might start getting the right support. When inclusion isn't pushed so hard also. In England the law says a child must reach their potential in education, so it's not enough for schools and FE colleges to just say the child is managing or not falling below average if in fact they can do a lot better, but aren't through failure to support.

    https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/398815/SEND_Code_of_Practice_January_2015.pdf

    6.1 All children and young people are entitled to an appropriate education, one that is
    appropriate to their needs, promotes high standards and the fulfilment of potential.

    This should enable them to:

    •achieve their best
    •become confident individuals living fulfilling lives, and
    •make a successful transition into adulthood, whether into employment, further or higher education or training



    https://www.legislation.gov.uk/ukpga/2006/40/section/1

    1Duties in relation to high standards and the fulfilment of potential

    For section 13A of EA 1996 substitute—

    “13ADuty to promote high standards and the fulfilment of potential

    (1)A local education authority shall ensure that their functions relating to the provision of education to which this section applies are (so far as they are capable of being so exercised) exercised by the authority with a view to—

    (a)promoting high standards,

    (b)in the case of a local education authority in England, ensuring fair access to educational opportunity, and

    (c)promoting the fulfilment by every child concerned of his educational potential.

    (2)This section applies to education for—

    (a)children of compulsory school age (whether at school or otherwise); and

    (b)children under or over that age who are registered as pupils at schools maintained by the authority,

    and in subsection (1) “functions” means functions of whatever nature.

    (3)In this section “child” means a person under the age of 20.”



    https://www.gov.uk/government/publications/2010-to-2015-government-policy-young-people/2010-to-2015-government-policy-young-people
  • Holly59
    Posts: 2,263

    What we need to emphasise in Scotland that a formal diagnosis of PDA is NOT required under the ASL act. It's needs based . The Wellbeing Wheel emphasises that they have a duty to protect a child's mental health and to make a child feel safe and well nurtured. For that PDA Strategies must be used. We also must emphasise that Mainstreaming does not work in so many cases of PDA.



    This is also a double-edged sword in some respects. It's the same in England, EHCPs are needs-based. But because there is a culture of not believing or listening to parents, a parent's expertise in their own child is ignored. Hence the culture of sending them on parenting courses rather than assess ASD. So if a child with ASD or ASD-PDA masks in school, the parent telling the school and the LA that their child is in difficulty will be ignored. There needs to be safeguards built in to the 'needs-based' definition. It cannot only be when a professional has put on a piece of paper that there are those needs that the child gets the support. When they stop falsely accusing parents of MSBP/FII and emotional harm, then children might start getting the right support. When inclusion isn't pushed so hard also. In England the law says a child must reach their potential in education, so it's not enough for schools and FE colleges to just say the child is managing or not falling below average if in fact they can do a lot better, but aren't through failure to support.

    https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/398815/SEND_Code_of_Practice_January_2015.pdf

    6.1 All children and young people are entitled to an appropriate education, one that is
    appropriate to their needs, promotes high standards and the fulfilment of potential.

    This should enable them to:

    •achieve their best
    •become confident individuals living fulfilling lives, and
    •make a successful transition into adulthood, whether into employment, further or higher education or training



    https://www.legislation.gov.uk/ukpga/2006/40/section/1

    1Duties in relation to high standards and the fulfilment of potential

    For section 13A of EA 1996 substitute—

    “13ADuty to promote high standards and the fulfilment of potential

    (1)A local education authority shall ensure that their functions relating to the provision of education to which this section applies are (so far as they are capable of being so exercised) exercised by the authority with a view to—

    (a)promoting high standards,

    (b)in the case of a local education authority in England, ensuring fair access to educational opportunity, and

    (c)promoting the fulfilment by every child concerned of his educational potential.

    (2)This section applies to education for—

    (a)children of compulsory school age (whether at school or otherwise); and

    (b)children under or over that age who are registered as pupils at schools maintained by the authority,

    and in subsection (1) “functions” means functions of whatever nature.

    (3)In this section “child” means a person under the age of 20.”



    https://www.gov.uk/government/publications/2010-to-2015-government-policy-young-people/2010-to-2015-government-policy-young-people


    I was speaking to a mum the week before last . She has waited forever for an assesment and it's been cancelled time after time due to sickness . She has been fobbed off recently with " You don't need a diagnosis to get support " because they are so overwhelmed with cases . This mum needs an accurate diagnosis because she believes her child has LD and other issues . She has been told by the Education System she needs a diagnosis otherwise she won't get any support .

    In the mean time this child has horrendous issues , the family are past crisis point .

    Yes it's double edged but I don't have a formal diagnosis of PDA for my boys but College are using PDA stratagies with the youngest . We have got PDA on a few medical reports for the youngest .

    Fortunatly the " Parenting Courses " was highlighted in the debate to Parliament . They were horrified at that .

    You dont need a diagnosis for a CSP or DLA or PIP but you need support to fill in the paperwork . Nightmare .

    Just don't mention DSA at present .

    The system is so unfair for people with invisible disabilities and mental health issues .

    Pat xx








  • LAs seem to vary. Ours simply refuse to accept anything a parent says. If it's not written explicitly in a professional report they don't want to know. Even if the difficulty is described but the action/support isn't, they won't write in the action/support to an EHCP. There is simply no respect for parents. Someone in another LA showed me their EHCP covering letter and it was way kinder and more sympathetically written than our LA does.

    It's like everything else the Government does. Gives with one hand and takes away with the other. Where there is any loophole or way of interpreting the law arbitrarily, LAs will use it to avoid providing support. So as much as the rest of the UK is also needs-based, the majority of LAs will refuse to write actions and support if you don't have diagnoses to back it up. With eldest, she got neither statement or DLA until her ASD was diagnosed, I had to appeal for both.

    Even with the alleged needs-based system, I strongly believe every individual needs a diagnosis for a variety of reasons, but ultimately for the educational support side too. A child might be found to have difficulties with writing, if they have undiagnosed dyslexia they may just be given handwriting support without any understanding of why they are struggling and sometimes it might mean inappropriate or sticking plaster support is given. A child needs a holistic understanding of the difficulties by professionals to ensure the support is tailored and appropriate. Especially when so many of the difficulties are invisible, such as SPD which might produce anxiety reactions of challenging behaviours, so they are treated as naughty or excluded when actually they needed a different environment or adjustments where they were, even something as simple as ear defenders, to manage.

    Some schools and colleges might work well with parents and agree to provide the right support without the full diagnosis, but there are many who won't. I bet Pat if you had no ASD diagnoses you wouldn't have found them as willing to listen. The ASD diagnosis is 3/4 of the battle. Simply explaining the PDA profile with the backing of the ASD diagnosis is a lot easier than with no diagnosis at all. Parent-blame is rife and apparently half of us have FII.
  • Holly59
    Posts: 2,263
    I honestly don't think we will ever get an accurate diagnosis for both boys . Complex cases .

    I think the message is getting through very slowly that a formal diagnosis is not required . Sadly it's now being abused and parents won't know the extent of their child's issues .

    It's Colleges , if you reach that far , who are realising " why is this student struggling " and it's only when the assessments start that the extent of the issues are exposed .

    I just hope more Professionals attend the PDA Conference next April .

    Pat xx

  • Same here, due to the late stage and rejection of diagnosis. Looking back at documentation and history of behaviours it speaks for itself however, I am sure your two are the same. When there are co-morbidities, it becomes even more complex. Not so complex us simply mums can't see it right before our eyes though. Only complex for the professionals eh.

    Yes, this is what I mean about the authorities abusing the system. How can they put families through appeals and battles when the difficulties exist.
  • Holly59
    Posts: 2,263
    http://www.parliament.scot/parliamentarybusiness/report.aspx?r=11198&mode=pdf

    A draft copy of the minutes . Page 27.

    It was very interesting yesterday at the Scottish Autism Stratagy Meeting , they said although they would not be altering the Stratagy as such they could tweak if they though necessary .

    I am not sure how long the official report will take but I will keep you updated .

    I took a copy of my private email to my GP today from Petitions and he is going to seek clarification from where he stands on this issue . I have advised a number of others to do the same .

    Pat xx
  • Does NHS NICE guidance apply to Scotland? Only what's in the current NICE Guidance is so frustrating and incorrect. They mention PDA, but also describe ODD and say PDA behaviours can be described as ODD. As everyone seems to take their lead from NICE, that is a major hurdle to overcome in recognition.
  • Holly59
    Posts: 2,263

    Does NHS NICE guidance apply to Scotland? Only what's in the current NICE Guidance is so frustrating and incorrect. They mention PDA, but also describe ODD and say PDA behaviours can be described as ODD. As everyone seems to take their lead from NICE, that is a major hurdle to overcome in recognition.



    Yes .
    It should not be guidelines should be mandatory . Yes there are a lot of inaccuracies to be updated in the future.

    Pat xx

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