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Feeling let down by support offered/available

PieceofPie

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.

Parents

  • The Community Paediatrician comes over as very unprofessional, what's termed "not invented here"; she may be very sceptical about autism, and putting her own prejudices before her role.

    In an ideal world you could challenge someone like that - but the world is full of "gatekeepers". The only consolation you may have is that she is a disgrace to her profession.

    The debate about private diagnosis rumbles on. Some of these private services are reticent to disclose the fact that the NHS is hostile to their diagnoses - and I do think there's a lot of money before honesty going on...private diagnoses being used to fund private research - one could name prominent names....

    However it is also appalling that NHS behaves in this way, and it is the ambiguity of NHS's position that gives voice to professionalsd like the one you have just encountered.  Moderators, please can you raise this with campaigns, it is a recurring and important problem......

    That doesn't excuse the behaviour of the health professional you have just encountered. I don't know what game she thinks she is playing, but she is certainly not a true professional, and not worthy.

    You could raise a complaint, but to be honest, go along with it and see if she modifies her attitude out of some sense of duty (if she has any such morality). She should put you and your child first, and keep her mouth shut about her stuffy scruples, which she shouldn't inflict on you.

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  • The Community Paediatrician comes over as very unprofessional, what's termed "not invented here"; she may be very sceptical about autism, and putting her own prejudices before her role.

    In an ideal world you could challenge someone like that - but the world is full of "gatekeepers". The only consolation you may have is that she is a disgrace to her profession.

    The debate about private diagnosis rumbles on. Some of these private services are reticent to disclose the fact that the NHS is hostile to their diagnoses - and I do think there's a lot of money before honesty going on...private diagnoses being used to fund private research - one could name prominent names....

    However it is also appalling that NHS behaves in this way, and it is the ambiguity of NHS's position that gives voice to professionalsd like the one you have just encountered.  Moderators, please can you raise this with campaigns, it is a recurring and important problem......

    That doesn't excuse the behaviour of the health professional you have just encountered. I don't know what game she thinks she is playing, but she is certainly not a true professional, and not worthy.

    You could raise a complaint, but to be honest, go along with it and see if she modifies her attitude out of some sense of duty (if she has any such morality). She should put you and your child first, and keep her mouth shut about her stuffy scruples, which she shouldn't inflict on you.

Children
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