The Key to the Door of the Labyrinth

This morning I was lucky to be able to attend a multidisciplinary workshop on the planning of diagnostic services for children with Neurodevelopmental Disabilities. I say ‘lucky’ because it was a 9am start which for many parents is impossible, but I was also lucky to live in an area whose key agencies, were welcoming of parents on such a topic and lucky that there is a PCF who are active in pursuing that welcome.

Image result for labyrinth

In attendance were senior health professionals, representation from local parent groups including @SENDFamilyVoice, @expresscic, and @AdhdRichmond and at least 3 Educational Psychologists. It was sad however to only have one teaching professional present.

Ken Wong, Clinical Manager across 5 Boroughs, presented an impressive picture of how referral times for diagnostic services had been reduced drastically and praised to an extent the pre-diagnostic triaging services. I did point out that focussing on reduction of referral times whilst forcing a pre-referral dance that for us has taken two years ought to be considered as part of this picture but a couple of professionals felt it was necessary to point out that this was what we were there to discuss. An ironic way of shutting down discussion.

The workshop moved on and a suggestion made that children with mild autism and severe autism require different interventions but if you are delivering high quality individualised data-driven evidence-based practice I’m not entirely sure why. However, the suggestions later that some children would be okay in mainstream with the right intervention gave the impression that Health do not understand that ALL children are required to be by law, if their parents choose it. But then one of the main themes from the group feedback was lack of communication and shared knowledge across teams within health and also with education. This frustration was shared equally by the professionals present and the parents but there was no indication of who or what was a barrier to this lack of cross agency information sharing. Funding, as always, was mentioned.

@AdhdRichmond presented an impressive summary of a solution developed by @ADHDFoundation however, which demonstrated not only the potential to meet needs locally and through co-production but in a way that could be self-supporting and raise funds. There was some excitement about the potential of this and there were discussions around creating local hubs of expertise pooling resources from both ASD and ADHD services. This model though has been asked for by @expresscic for a number of years though to no avail so it will need a real push and demonstration of support to become realised.

diagnosis doesn’t produce a golden ticket

There were many other presentations on some of the things professionals had been trying to do to improve services and confidence in families and it was clear there is a real desire to make changes for the better. Pilots and research was presented on things that were working well and suggestions for future direction to reduce waiting times and signpost to resources. There was a real recognition that diagnosis doesn’t produce a golden ticket to support but more like a key to the door of a labyrinth and there was some consideration of how pathways could be made less confusing.

It was concerning however to hear it suggested that both Educational Psychologists and Health Practitioners ought not to make recommendations for children of services that do not exist in some places (such as Occupational Therapy) as these raised expectations of parents and caused problems for professionals on the frontline. Surely the development of these services locally is entirely dependent on the evidence through these reports that they are required? And without such evidence parents are having their voice and their opportunity for coproduction in terms of the Local Offer removed. A strong parent voice enables those in positions of influence to better justify their demands for prioritising the funding for these services.

Overall it was a positive workshop. And there will be another. Already the organisers have listened to feedback about start times and promised a later start for families in future. This is an outcome and a good start. The attitude towards parents and families was respectful and welcoming and I would encourage the new voices of parents who are not affiliated to any organisation to attend and share their experiences and views. I would also suggest that ‘working together’ begin immediately and not wait until the end of the process, so that more educational professionals, particularly those on the frontline are aware of the workshop and facilitated to attend.