Feeling really fed up. I had high hopes for our meeting with the Community Paediatrician. Our meeting was a bit, well, frustrating.
She mentioned more than once that it was 'unconventional' that we had paid for a private diagnosis and how this 'made things difficult'...with no sense of the injustice of that when we paid for the damned thing cos we couldn't get anyone in the NHS to listen to us or accept any sense of urgency in getting our son's problems even considered.
Anyway - the meeting seemed rushed (I know they are busy but I was kind of made to feel like being there was an inconvenience and fitted in instead of her coffee break or something).
She didn't give me much chance to speak, and when I asked to ask my questions I kind of felt like I had already run out of time. She wasn't able to offer any help or advice or even take any punt at a prognosis for his future. I don't expect any contract saying 'he will be this or that'... but something to give us a ballpark of what to expect as he grows. The 'message' was almost 'well just suck it up and get on with it what do you expect us to do'.
The biggest relief was that she said we wouldn't have to go through a separate assessment with the NHS too. The biggest frustration is that she decided my son didn't need any OT and she barely glanced at him the whole time - I am not so sure and would at least have liked him to see an OT. Her response re his massive sensory issues was I will send you out some leaflets - I don't want leaflets - what good are they in the age of the internet when I already have access to loads of info - my son needs practical help. Anyway she then explained that she would see me in 3 - 4 months to see how we were getting on but past that there would be no point in regular appointments to monitor. So disappointed. I am tired of fighting every day. Alone. I was expecting some help. Silly me.
