PDA: a turning point in Scotland?

They first lodged a petition 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.

This was then discussed at the Scottish Parliament’s Public Petitions Committee on 19^th January where evidence was taken from Mary, Pat, Heather Fullbrook and Euan Robson (former MSP). Written evidence was also taken from Dr Phil Christie – this underlined the importance of accurate understanding and appropriate support for individuals with PDA and their families:

“It is widely recognised that individuals with PDA and their families are exceptionally vulnerable to being misunderstood, not having their needs met and of experiencing exclusion from educational settings. Wider recognition and assessment that leads to appropriate description and formulation of the child’s difficulties and needs is the starting point for the provision of appropriate support. With this support the lives of individuals and their families can be transformed.”

As a result of the meeting, the committee agreed to write to the Scottish Government, National Autistic Society and the Scottish Autism Society; Scottish Autism Awareness organisations including Enquire and Govan Law; the Royal College of Paediatrics and Child Health; COSLA (Convention of Scottish Local Authorities) and the Educational Institute of Scotland. Pending their responses, Mary and Pat will be informed of the next steps.

The PDA Society is continuing to build efforts to persuade the Government in England and Wales to take more action. Parents tried similar petitions and letters to the Government in the past but failed to secure enough signatures to be able to get a response (10,000 would be needed),  so we are working with the All Party Parliamentary Group to get PDA on their agenda and making contact with lots of bodies that influence Government.

There is also work going on by parents and the PDA Society at local level, trying to directly improve local services.