Parliament Workbench

Petition · PE01625 · Session 5

Wider awareness, acceptance and recognition of Pathological Demand Avoidance Syndrome

Closed Submitted 8 Nov 2016 Health
Signatures
0
516 online signatures with a country
Comments
67
Considered
4 meetings
in the Official Report

What it asks

Calling on the Scottish Parliament to urge the Scottish Government to promote a wider awareness and acceptance of Pathological Demand Avoidance syndrome among health, education and social care and social work practitioners, and, via the appropriate agencies and bodies, to institute and facilitate training in the diagnosis of the condition, to promote the development of therapeutic programmes for those with the syndrome and to provide support for their families and carers.

What the petitioner did first

We have raised the issue of the recognition of Pathological Demand Avoidance syndrome with Scottish Borders Council. This has been in the context of individual cases involving our children and young people in the education system. We have also presented details to further education institutions and to parts of the NHS.
We have discussed better awareness and recognition of the syndrome with the PDA Society and among parents in the Borders and further afield in both Scotland and the UK where children and young adults have already been diagnosed with the condition.
We have raised the question of proper recognition of the syndrome with MSPs and via them the Scottish Government calling unsuccessfully for a coherent response in terms of both public policy and its implementation.

Where it was considered

Official Report
  1. 19 Jan 2017
    Public Petitions Committee
    New Petitions
    1 mention
  2. 30 Mar 2017
    Public Petitions Committee
    Continued Petitions
    1 mention
  3. 15 Jun 2017
    Public Petitions Committee
    Continued Petitions
    1 mention
  4. 9 Nov 2017
    Public Petitions Committee
    Continued Petitions
    1 mention

Signatures by country

516 online signatures
  1. Scotland322 62.4%
  2. England97 18.8%
  3. United Kingdom77 14.9%
  4. Northern Ireland4 0.8%
  5. Wales4 0.8%
  6. United States3 0.6%
  7. Australia3 0.6%
  8. Canada2 0.4%
  9. New Zealand2 0.4%
  10. South Africa1 0.2%
  11. 1 other countries1 0.2%

Comments

67 comments, oldest first
67 comments · showing 1–50
  1. Barbara irvine 8 Nov 2016
    All professionals in Education, Social Work, Health, CAMHS etc need to keep themselves updated as is infact a legal requirement of their professional development and registration. Training from outside agencies especially in the Highlands due to geographical area and distance to central belt.
  2. Maria Pereira 9 Nov 2016
    Is time for the Scottish government do more for the kids and teenagers with PDA received the right treatment and they're families had all the support they need, this kids need education not be kick out of the school because the teachers don't know how treat the kids with PDA.
  3. Anne-Marie Gavin 9 Nov 2016
    Please sign this petition and support the campaign
  4. Anne Moody 9 Nov 2016
    PDA recognition is imperative for all the children and adults with this condition. Schools, health care, social workers, government and especially the families who have to cope with this condition on a daily basis.
  5. Helen Ferguson 9 Nov 2016
    Parents should not have to fight to get what is a basic human right to be educated. GIRFEC don't just say it DO IT.
  6. Jillian Cumming 9 Nov 2016
    Years and years iv been trying to gain help for myself and 2 out of my 4 children within services , in actual fact over 2 decades for myself and 14 and a half years for my oldest daughter (now 18) who has also slipped through the net! After 3 years of fighting every professional going we've finally been given a date for ados at end of this month for my other daughter who is 14 and a half and hasn't been in mainstream over 3 years.. Inverness Highlands are lacking in professionals experienced in this type of Autism and will pass the buck to parenting issues, I have been trying to educate those involved in my daughters CSP as they are literally clueless. .. We need help and we need it fast! I know at least 20 people personally who are struggling to gain any support from services , It's shocking what these ppl who are suppose to be helping us are failing our children's needs!
  7. Bryan Porter 10 Nov 2016
    It's not a lot to ask!!
  8. Gayle Irwin 11 Nov 2016
    Basic rights. This should not have to happen to get more help and awareness.
  9. Allan wood 11 Nov 2016
    Signed as i believe childrens health is more important than saving cash. Help our kids.
  10. Ross sibbald 11 Nov 2016
    Give PDA the recognition it should..!
  11. Teresa Fitzgerald 11 Nov 2016
    Helping to raise awareness
  12. Joan martin 11 Nov 2016
    GIRFEC !!!!
  13. Robert Sims 11 Nov 2016
    About time Scotland recognise this
  14. Cheryle weir 11 Nov 2016
    Good luck fiona. Xx
  15. Lesley dykes 11 Nov 2016
    Help our kids!!
  16. Geraldine Clark 12 Nov 2016
    PDA PETITION TO THE SCOTTISH GOVERNMENT-COMMENT

    My daughter was the first child in Scotland to be diagnosed with PDA by Professor Newson in 1998. The clinicians at my local CAMH worked with the experts in Nottingham and gained a profound understanding and knowledge of the techniques and resources required to help my daughter. My local Consultant Psychiatrist put in place a support package where my daughter was helped through a combination of attending the CAMH one day a week and the local education authority took on board the advise from the specialists (after much hard work) and my daughter was supported in her local mainstream school by a full time special educational needs assistant til age 15. As a result of the early recognition of PDA by professionals and the correct support package my daughter went onto University to study English, Creative Writing and Journalism. She now owns and runs an internet horror channel. I am extremely proud of her, these children have unique talents and with the right support they can achieve so much. At the time of her diagnosis we were told that many of these children end up in prison or secure units or at best working a half day a week in Tesco. I implore The Scottish Government to promote a wider acceptance, awareness and recognition of PDA . My daughter is living proof that through the correct early assessment, diagnosis and treatment of PDA and the utilization of the correct education and handling guidelines these children can go on to achieve a successful outcome. Please support this petition by Patricia Hewitt and Mary Black so that children with PDA in Scotland can receive the appropriate services and treatment they so desperately need and rightly deserve to become happy and fulfilled individuals like my daughter.
  17. Paula Webb 12 Nov 2016
    PDA is an Autism Spectrum Disorder. There has been recent Research that clearly shows that Early Diagnosis and Intervention is the key to children affected with PDA achieving their full potential in life. Children with PDA need to be assessed, diagnosed and their medical, social and educational needs met.
    Therefore, unless Professionals are TRAINED to recognise and diagnose this complex and challenging condition these children will continue to be forgotten and misunderstood by professionals.
  18. J. Stewart 12 Nov 2016
    Keep doing the right thing, Scotland!
  19. Alice McCullen 13 Nov 2016
    Extreme demand avoidance as a result of extreme autistic anxiety is a dreadful burden for a child and their family. All need informed help, the earlier the better. This keeps families together, prevents crises that can lead to ATU admissions and worse. Professionals need to engage with this horrible condition
    - Scotland can lead the way
  20. Gail Bannatyne 13 Nov 2016
    Please support these children and give them the access to the same opportunities as others. Thank you.
  21. Anna Kennedy OBE 13 Nov 2016
    This is a much needed service to support families and individuals affected.
  22. Jane Sherwin 14 Nov 2016
    PDA is a distinct and recognisable diagnostic profile within the autistic spectrum that requires a differential diagnosis due to the different interventions that are successful. Without greater understanding, awareness and recognition by professionals many children who present with the cluster of symptoms are often left unsupported and misunderstood. At worse they are subjected to the wrong interventions which only serves to exacerbate the situation for the whole family and completely crush the child. The correct diagnosis can lead to a shared approach across all settings and much improved short and long term outlooks. It really is time that health professionals stopped ignoring the validity of this complex condition.
  23. Natalie McCrindle 14 Nov 2016
    I have witnessed at first hand the challenges and the personal resilience required to parent a child with PDA, early diagnosis is vital to ensure families are provided with support when they need it.
  24. Susan Walls 14 Nov 2016
    The charity I work for have been providing information and support to parents who call our information line, and many parents have expressed their frustration with the lack of recognition, the lack of proper support for families with a child with PDA syndrome. We signpost parents to the best support we can find and we supported parents to attend a workshop to understand the condition. Parent's feedback they found the information on the condition was relevant, good to have peer support from other parents but trying to find appropriate resources and services that recognise and can support children, young people and their families, was their major challenge.
  25. Willie Rutherglen 15 Nov 2016
    PDA is one of a number of conditions that have a massive impact on children, particularly in their early years, that there is insufficient awareness of and support to those affected. The impact and consequent costs in later of failing to recognise and address these needs is immense.
  26. Sharon Burns (PACT For Autism Glasgow) 15 Nov 2016
    I couldn't agree more with this petition.
  27. Lee Cameron 16 Nov 2016
    Long overdue!
  28. Danielle Jata-Hall 16 Nov 2016
    Some countries will diagnose PDA and others won't
    - this means that it is like disibility discrimination. If your born in one post code you will get support, but by another you are left fighting to clear your name under 'parent blame'. It is a national disgrace
  29. Nicola Downie 16 Nov 2016
    I think that it's ridiculous that CAMHS can recognise PDA in selective areas and not in others. Families cannot access services or support without a diagnosis resulting in struggle and crisis. Children often miss years of education and lots of positive opportunities due to the lack of understanding and support. PDA needs recognition EVERYWHERE as an autism spectrum condition.
  30. Leigh Macdonald 16 Nov 2016
    We live PDA every single day. Experts have recognised PDA traits in my partners son but our local NHS don't recognise this condition therefore he goes without a diagnosis or support. Changes need to be made
  31. Anne Fisher 16 Nov 2016
    This has to recognised by the nhs in scotland by consultants they are failing in providing a service for which families are straining to cope & this is recognised in england & wales by consultants & help is being given
  32. Kellyann berney 16 Nov 2016
    I have mentioned this to professionals many times with regards to my son who has ASD.
  33. Amanda Downie 16 Nov 2016
    PDA is devastating to families and creates so many blocks for children with the condition, resulting in them being misunderstood by people, including health professionals. They deserve to be recognised and supported!
  34. Kim Horn 16 Nov 2016
    Any illness should be recognised and supported!
  35. Chrissy Gower 16 Nov 2016
    Parents of children with this problem really need more support.
  36. David Ward 18 Nov 2016
    good luck with this
  37. Rebecca Mcgeachie 21 Nov 2016
    Due to the nature of the condition and the structured design of the current education system, we are finding there are no suitable placements for this group of children on the Autistic Spectrum
  38. Susan Moody 21 Nov 2016
    It is imperative that this condition is recognised as part of the Autism Spectrum, without the PDA signpost people spend years trying strategies that exacerbate the child's anxiety and lead to crisis point. All children are entitled to adequate and efficient support by law! Unfortunately for those with PDA this does not occur and is not only an infringement on their human rights it has a severe knock on effect to parents, siblings, teaching staff and anyone else who is in contact with these children. Parents try their best but we simply cannot do this alone!!!
  39. Anne Moody 21 Nov 2016
    My grandson has PDA, despite the governments talk of GIRFEC my grandson has no formal education. My daughter has had to fight for all the help she should have had as standard. PDA has been recognised by the Autistic Society so why does our government not. All teachers, health professionals, social work any anyone who works with children with special needs have to be made aware of this condition. Different strategies have to be used for these children. Educate Educate Educate.This condition not only affects the child but the parents, siblings and everyone in contact with the child. These children are often mistaken for being defiant but I can assure you they are not. Anxiety plays a major part, Fight or flight, Hurting others and their self and many other reactions too numerous to name. Please help these children and families.
  40. Laurie Crump 23 Nov 2016
    I am a college lecturer and have worked with a PDA student this academic year and last. It was only towards the end of his first year studying with us that his condition was properly diagnosed, and he therefore did not benefit from any properly targeted extra support or appropriate arrangements. That he was able to complete the year and come through all the assessments is a tribute to the extraordinary perseverance of his mother, and the many sacrifices she made, to ensure his attendance.
    Now there is some properly targeted support in place, in the form of subject-specific one-to-one tutorials, he is making really significant progress. However, the support is only possible because his mother is paying for it every week. It is another example of the lengths to which she is prepared to go to give him every possible chance of success. If more support of this kind could be funded, as it surely should be, it would make a tremendous difference. I absolutely support the efforts to raise awareness of the syndrome, and hope that all relevant organisations will recognise the importance of investing in strategies which actually work.
  41. Jean H Irvine 23 Nov 2016
    PDA awareness supporter
  42. Angela Hamilton 24 Nov 2016
    Please don't bury your head in the sand on these things. Science and technology are uncovering new genes and conditions all the time. Please read the research and do the right thing to help families in need. With extra learning suppprt these kids will positively contribute to society as adults.
  43. Bob Riley 25 Nov 2016
    My friends daughter has PDA syndrome, this condition needs support to the families and needs acted upon now.
  44. Linda Langford 25 Nov 2016
    These people affected by PDA need help. Time to do something now.
  45. Anne-Marie Gavin 28 Nov 2016
    Please support this cause
  46. Tegan Watson 28 Nov 2016
    Friend and supporter of individual with this diagnosis.
  47. Wendy Doran 29 Nov 2016
    If Scotland take the lead, recognise this as a condition, perhaps England will follow! There's still no diagnosis or training across the schools, and standard autism strategies don't work with those with PDA!
  48. Laura Kerbey BSC(Hons) PGCE PGCSE NPQH 29 Nov 2016
    It is essential that PDA is recognised to ensure that children, teenagers and adults with the condition get the support and understanding that they need. Without this support the mental health of individuals with PDA is at severe risk. PDA also has significant impact on families and is causing family break down and crisis. It is essential that the condition is not only recognised but that a wiser understanding of the condition is spread throughout educational and care settings too.
  49. Anna Lyons 30 Nov 2016
    Children are being failed by the lack of understanding of this condition. Their parents are desperately trying to help them. Please support.
  50. Mel James 5 Dec 2016
    I know a family who have had no support at all with pda. The children have been recognized with pda but have no diagnosis due to this condition not being formarly recognized. Over the years the children have been ridiculed by teachers and parents alike. It was to others blantantly obvious that these children had difficulties and anxiety problems but no educational supports had been supplied. They have been let down so many times...such a shame as both boys are talanted individuals.