I’m exhausted with having to micromanage systems and process. Too often the paths to accessing the services my children needs are cluttered with semi-automated processes manned by professionals that are seemingly unable to use their knowledge, skills and judgement. Any pre-existing commonsense, autonomy and advocacy seemed to have been driven out.
Most recently, CAMHS systems meant that even the simple straightforward advice of one of their own professionals (for Lily) was frustratingly ignored over and over.
I feel that despite patiently explaining the obvious to them I was met consistently with “computer says no”.
The result was: hours of wasted professionals time (accessing wrong service, school letters and meetings, phone calls…), weeks of delay in accessing an assessment for Lily, weeks of little access to learning and ensured Lily’s difficulties have become more entrenched. In addition, the strategies that enable her to remain resilient she has been unable to access for so long that I have cancelled club memberships.
Just because “computer says no”.
I don’t blame the ‘computer’. I blame the programmers… to be more clear, the system that is responsible for this mess and the people at the front-end seem to be pretty much at the mercy of ill-thought-through management decisions?
I wonder if the professional’s voice is a muted as the parent voice in these matters…
So what helps? After a long hard think it, occurred to me that I should really take some of my own advice. I wrote to PALS with the questions:
- Please, can you let me know who specifically is responsible for the decision not to assess,
- What policy was used when making the decision … and
- What information about Lily was used when applying the policy?
When giving ‘advice,’ I usually comment that ‘your questions won’t result in answers, but by asking them you may see a change in direction of decisions being made’.
This was the case for us. I was sure that no-one had actually properly considered the facts. The result of my email raising 3 questions was a great conversation with a professional that was, in fact, able to use judgement and act with autonomy. No nasty atmosphere, no complaining or animosity.
Fighting to get Lily out of her “allocated” system and into the one she actually needed was ridiculous and took far too long.
I have implied and stated it before; allocating the wrong resources is a waste of resources, yet CAMHS and autism diagnosis services currently seemed to be riddled with this inefficiency. I feel that I see new barriers to early access and diagnosis being erected year on year.
Thank goodness for a school team whose focus is on working with us, has empathy and understanding and ultimately who show professionalism that many would sell a kidney to access. The difference that this can make is described outlined here.
Fingers crossed that this approach will help others too. Wishing you all the very best of luck…