Further to the publication of our Being Misunderstood report in May, showing that outcomes were generally very poor for the group of autistic people who have a PDA profile, the PDA Society issued a Call to Action for local authorities to issue position statements about PDA.
Position statements are needed to clarify current confusion caused by the ongoing debate over the exact nature of the condition and its relation to other conditions, and ensure that individual needs are properly assessed and met and outcomes focused on, in accordance with NICE guidelines. Authorities such as Sheffield City Council and Surrey County Council have already published position statements and find that outcomes are improved as a result.
The PDA Society is often contacted by people wanting to know how best to work with their local authorities on this, and we produced a guide with some template materials.
We’re now delighted to share details of the first in what we hope will be many local campaigns.
Abigail Axton has surveyed 110 families in the Hampshire and Sussex area (falling under the Sussex Partnership NHS Foundation Trust) and written a detailed report (Hampshire & Sussex report). The document shares local families’ struggles for diagnosis and support, highlights the barriers experienced when trying to accessing services and makes suggestions for improvements. Sussex Partnership has previously issued a position statement about PDA, which is inadequate and has failed to improve outcomes as Abigail’s survey demonstrates.
Abigail has circulated the report to CCG and other service commissioners and managers, autism leads, paediatricians, CAMHS and MPs and hopes to secure meetings with key decision makers in due course.
Congratulations to Abigail for all her hard work and wish her the best of luck for the road ahead. We hope that this will encourage others to undertake a similar approach in their local areas.
Abigail is happy to be contacted via email and for her report to be used as a template.