Last week I attended a conference in Birmingham organised by Public Health England , entitled ‘Public health and people with learning disabilities: national evidence for local action’.
There was a wide range of attendees, including people with learning disabilities with their carers and families, representatives from the voluntary sector and charities such as Rescare, Autistica, the Challenging Behaviour Foundation, together with many representatives of the NHS and local government from across England. There was even one observer from Ireland!
The broad aim of the conference was to assist Public Health England in deciding what proposals it should present to NHS England for improvements in the health care and health outcomes of people with learning disability and/or autism.
At this point I should remind you that in August, to celebrate the 70th anniversary of the NHS. the government announced specific extra funding to achieve improvements in four ‘sectors’, one of which was learning disability. There now exists the ‘NHS Learning Disability and Autism 10 Year Long Term Plan‘ . The initial discussion phrase of the plan has just ended, and this conference was intended to continue the process of defining objectives and proposals.Any proposals for improvement will have to be based on clear evidence, and improvements will have to be measurable: there was much discussion of needs at particular life stages, and of the identification of clinical priorities and of implementing enablers of improvement. So it was inevitable that key speakers and workshop-coordinators at the conference were representatives of Public Health England’s Learning Disabilities Observatory. The Observatory collates anonymised data from a range of available sources (GPs, CCGs, health units and hospitals) and subjects it to statistical analysis.
What became clear during the day is that there are ‘gaps’ in the data available (much talk of ‘data sets’). With my experience as the parent of someone on the autistic spectrum, I was not actually shocked to learn that there is insufficient data on adults with autism, diagnosed and undiagnosed; and that current transition processes between childrens and adult services are flawed, generating ‘problematic data’ and even allowing some persons to ‘go missing from the system’ as they reach adulthood.
I could write more, but will wait for the conference notes and summary to arrive (hopefully soon), and perhaps then add to or supplement this blog!
At this point, for readers in Scotland, I will add that there is a Scottish equivalent of the Learning Disabilities Observatory, based at Glasgow University, fulfilling a similar role in advising the Scottish government on how to improve services.
Finally, the agenda of this conference fitted in well with Rescare’s ongoing campaign to highlight the fact that people with learning disabilities and/or autism are being affected just as much as the ‘general population’ by the obesity crisis which continues to feature so prominently in the media (press, radio and TV). In fact they are more acutely affected than the wider population. The web-page just added to this website (Learning Disability – Obesity, Health, Diet) focusses on this issue – and offers links to resources and information for those affected by it ) .
JR