Campaigning for PDA Awareness

PDA awareness, recognition and understanding has come a long way in the last seven years, which was when I first heard about it.  However, assessment and diagnosis is still very much a post code lottery and greatly dependant on which part of the UK you live and on the current policy stipulated by your Local Health Trust. This can leave many parents completely at a loss when it comes to pursuing an assessment for PDA, which could potentially lead to the correct understanding and support for their child across all settings.

Various professionals, services and charities are working extremely hard to secure wider understanding and acceptance of PDA.  But one of the most powerful voices in the pursuit of change can be from parents and especially when parents are able to join forces with other parents and provide a united front and therefore a much stronger and louder voice.

If we want to see tangible changes sooner rather than later, it really may be a case of trying to drive changes from the front line in conjunction with the excellent work and progress that is being secured higher up the chain by the many professionals, services and charities.

If you feel that you are able to organise and drive an awareness campaign in your local area then please do read on

Preparing for your campaign

  • Set up a local support group to enlist the help of local parents who either have a child diagnosed with PDA or feel that their child may have PDA. Stoke / Staffs Support Group
  • You could set up a local petition like we did, please feel free to use any wording that may be beneficial for you and also please feel free to sign the following petitions The commission of a diagnostic service for PDA in North Staffs and The commission of a diagnostic service for South Staffs
  • Ask local parents to request an out of area referral for an assessment for PDA.  The more requests a CCG receives the more likely they are to feel a need for a service to be offered locally. You can find guidance on this here.
  • Design a survey and ask your local parents to complete it in order to validate your concerns with data and service users experiences survey results
  • Compile a list of case studies from local parents who are willing to share their experiences of local services and how this has impacted on their child and family
  • The recent case studies compiled by Sally Russell and Vikki Threlfal for the PDA Society are also extremely useful resources which help to establish the huge benefits of adopting PDA strategies for children who fit the PDA profile Survey and Case Studies by the PDA Society

Educate yourself so that you become extremely well versed in this topic

  • Educate yourself as much as possible on PDA and the diagnostic criteria
  • The differences between PDA and a more typical presentation of ASD
  • The differences between PDA and other conditions with a diagnostic overlap E.G Oppositional Defiant Disorder (ODD) and Reactive Attachment Disorder (RAD),
  • The importance of a differential diagnosis from typical ASD due to the different interventions that are recommended
  • The conclusions of published and ongoing research

It is really important that you are able to present and defend your request from a fully educated and well versed position.  I know that this may sound daunting but the following links should help you with this Importance of a Differential Diagnosis, The Differences Between PDA and a Typical Presentation of ASD, The Differences Between PDA and ODD and The Differences Between PDA and RAD

Published research can be found by clicking on the following links Current, ongoing and pre-press research by Liz O’Nions  and Full list of research, publications and articles

Stage One – Beginning your campaign

It is better to begin your campaign slowly and to gradually build momentum by sharing more and more of the information that you have collated in a timely and drip feed manner.  If you disclose all of your information at the very beginning you will have nothing further to provide if your initial attempts are unsuccessful. By holding bits back you will always have something new to bring to the table and therefore retain engagement and dialogue with the services involved.

  • Ask your local parents to email or write to their MP, please find template letters below
  • Ask your local parents to email or write to your local Clinical Commissioning Group (CCG)
  • Email or write to your CCG and MP yourself and introduce yourself as the Campaign Leader,  sign the names of all the parents who you are representing at the end of any correspondence
  • Try to work together as a group because many voices, all reporting the same difficulties, will have more impact than one lone voice
  • Let local services know what your experiences have been and what you would like to see change, request that other local parents do the same make a comment here
  • Contact your local healthwatch and share your concerns.  Healthwatch can often be the bridge between service users and service providers.  Request that other parents also do the same because they are more likely to support you if they feel that the need for a service is affecting more than just a few families.
  • Follow your local Healthwatch facebook page to keep up to date with forthcoming events and meetings that may be useful to attend
  • Email your local Parent Congress, make them aware of your campaign and ask if they would be willing to discuss this at their next meeting or support you in any way
  • It can also be helpful to clarify if your local health trust has a specific policy regarding PDA.  Many areas don’t and so without a specific policy to not recognise this condition you may be able to use this loophole to your advantage. You can clarify the position of your local health trust by making a freedom of information request.  Here are some requests that have already been made. freedom of information requests re PDA

Template letter to MP’s  Template Letter / Email for MP’s

Template letters to CCG’s Template Letter / Email for Clinical Commissioning Groups

If your emails or requests are not replied to don’t give up.  Keep reminding them that you are still here, you aren’t going away and that you are expecting a response.

Stage Two – Maintaining your campaign if you receive a negative response to Stage One

If you receive a negative response, carefully consider the reasons that have been given to you for not agreeing to your request and try to address these in turn.  This is where your newly acquired knowledge of all things PDA will come in extremely useful because it will enable you to successfully offer a well informed counter argument backed up by your own knowledge and research.  Support your knowledge by using quotes from well respected clinicians, within the field of ASD. In addition also provide links and / or attachments to any surveys and case studies that you have either conducted yourself or that you feel would be useful.

At this stage it may be helpful to cc any organisations that are supporting you in your correspondence with your CCG.

How to deal with the common response stating that PDA is not included in either of the DSMV or the ICD10

It is perfectly valid and within the scope of the diagnostic manuals for ASD to be diagnosed as the umbrella condition and for clinicians to be able to refer to which diagnostic profile of ASD best describes the individual E.G. ASD with a profile of Asperger’s or ASD with a profile of PDA.

Autism is a spectrum condition. All autistic people share certain difficulties, but being autistic will affect them in different ways.

These differences, along with differences in diagnostic approach, have resulted in a variety of terms being used to diagnose autistic people. Terms that have been used include autism, autism spectrum disorder (ASD), autism spectrum condition (ASC), atypical autism, classic autism, Kanner autism, pervasive developmental disorder (PDD), high-functioning autism (HFA), Asperger syndrome and pathological demand avoidance (PDA).

Because of recent and upcoming changes to the main diagnostic manuals, ‘autism spectrum disorder’ (ASD) is now likely to become the most commonly given diagnostic term. However, clinicians will still often use additional terms to help to describe the particular autism profile presented by an individual. NAS Autism Profiles and Diagnostic Criteria

Phil Christie discusses the ongoing debate surrounding the lack of inclusion of PDA in the current diagnostic manuals.

This is, of course, an ongoing discussion and not one which can’t resolved in a simple way.

The manuals are there for guidance and reference and there is no national requirement to follow either set or indeed either of them.  Local areas/authorities/CCG’s may develop their own protocols about use of terminology and may, or may not ‘require’ their clinicians to follow a particular system.  One aim of doing this is to try and ensure consistency of terminology and practice within a particular area or region.

The NAS view about the two systems is that ‘…although DSM is influential, the main set of criteria used in the UK is the WHO’s International classification of diseases (ICD)’ (NAS, web site)

 Clinically I tend to use phrases such as diagnostic framework, diagnostic profile or diagnostic understanding; instead of ‘diagnosis’ on it’s own because this term might be interpreted narrowly to apply it only to the terms listed within the two manuals.  A point that I try to make is that the reason that there are numbered revisions of each manual is that they are revised every so often on the basis of ongoing research and clinical practice.  If we can’t start to use a term, or a diagnostic profile, how can we begin to research and better understand it and how will developments occur?  The latest research on PDA seems to endorse the view that all of the features that make up the PDA profile are ‘dimensional within ASD’.  Where they appear together and at a certain intensity they comprise a recognisable sub-group, or profile.  You referred to Judy Gould’s statement.  This came from her concluding slide the NAS PDA conferences and states that ‘diagnostically the PDA sub-group is recognisable and has implications for management and support’ Phil Christie, 2016

By providing new information and offering a counter argument you can justify your request for the CCG to reconsider their initial decision.

Stage Three – Securing a meeting with your CCG

I have done most of the above and it has been a long hard slog.  But eventually I did secure a meeting with my local Clinical Commissioning Group to discuss PDA, following my counter argument at Stage Two of my campaign.

Try to approach this meeting in a professional manner and leave any negative emotions at home.  This is your foot in the door and you need to make the most of this opportunity and win over the professionals who are meeting you. Present your case, share your concerns and explain that what you are trying to achieve, by requesting an assessment and diagnostic service for PDA, is a shared approach across all settings for these children and the families involved, which will ultimately be beneficial for everyone concerned including the professionals supporting them.

It was during my first meeting with my CCG that I chose to share various published research papers and papers that were shortly due for publication. I printed out the research that I felt was most relevant and useful and arranged it in a clear and orderly fashion in a file which I left with them to read at their leisure. Published Research and Published and forthcoming publications by Liz O’Nions

During this meeting, which was positive and collaborative, I was promised a follow up meeting which I am now waiting to receive a date for.  If one is not forthcoming I will be politely reminding and chasing.

The very best of luck to any parents who decide to try this approach and to drive awareness by the use of ‘parent power’ in their local area.  You will need to put in a lot of time, effort and leg work just to get your campaign off the ground, but once it is up and running it does become easier to manage.  Be prepared to need to keep chipping away, slowly build your evidence in stages and politely request acknowledgments and responses to your correspondence within reasonable time frames.  Even if your campaign does not achieve the desired result it will have still done a great deal to raise awareness among your local health trust.

For more information about PDA please visit The PDA Society and The PDA Resource

 

 

 

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About janesherwin

I am the parent of a child diagnosed with Pathological Demand Avoidance Syndrome. My hopes and aims are to raise awareness of this complex Autism Spectrum Condition presentation.
This entry was posted in 5. Campaigning for PDA Awareness, Uncategorized and tagged , , , , , . Bookmark the permalink.

7 Responses to Campaigning for PDA Awareness

  1. Pingback: Please Sign my Petition | Pathological Demand Avoidance Syndrome an autism spectrum condition

  2. Pingback: PDA Awareness – Surveys, Research, Campaigns and Media Interest | PDA Guidance

  3. lovepda says:

    Hello Jane, I’ve just come across your advice for campaigning and wanted to thank you for your hard work, guidelines and advise. Its early days but myself (NZ) and a parent from Australia are in conversation about what we can do to join our two countries and achieve recognition for PDA. We are beginning with contacting the Autism societies as they are not presently accepting PDA and we feel like this is a good place to start. We feel that we should all be at a Global standard for those countries who use the DSM to diagnose. Thanks again. Mel. x

    Like

    • janesherwin says:

      You are more than welcome Mel and I am thrilled that you and your fellow parent are willing to take up the PDA baton for raising awareness in NZ and Australia. The very best of luck and don’t get disheartened if you hit a few brick walls along the way, the trick is to keep trying and to find a new path forward around the brick wall as and when they appear.

      Like

      • lovepda says:

        Thank you Jane. Australia are making great headway. You have done so much of the hard work, we are the lucky ones, where by we don’t have to prove as much, rather inform and connect. I do hope you and your daughter are doing well. Our daughters are the same age. x Lots of love. x

        Liked by 1 person

  4. Anne Rhodes says:

    Hi Jane
    My name is Anne Rhodes and I am the Australian parent who Mel has mentioned. I would also like to thank you for all of your hard work. Not only does your journey give us confidence that we can achieve greater awareness of PDA, but you have provided us with many useful resources and links.
    Kind regards, Anne

    Like

    • janesherwin says:

      You are very welcome Anne and the best of luck in your raising awareness of PDA journey. You will need to be in it for the long haul but just keep going and remember, when you feel like you are struggling to make progress, that from little acorns do large oak trees grow. Just planting tiny seeds among a handful of professionals can often be the beginning of seeing those seeds sprout and who knows where the branches will eventually lead to.

      Liked by 1 person

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