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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.

  • My son is 23 i have been fighting all my life for him to be diagnosed only to be let down and said he isnt autistic even tho everyone that talks to me say he is. The worst was yet to come when the pyschlogist said hes not moderate but mild  learning difficulties that the schooling system is different from our testing so i thought well that means ive lied all this time for his DLA because they cant provide proper answers, so i am giving up now and going to ask for him to go into supported living as i cannot cope with the pressures any more  

  • I'm 27 and have waited for 4-5 years now to get a diagnosis sorted through the NHS.  Still waiting....  I got let down by the psycology department, again, and I was more firm this time and told my doctor I wanted this sorted.  She agreed, and I've ended up with an appointment for a senior dietician in December.  What's that got to do with psychology?!?  Back to the doctor I go... 

  • Hi Tagacia.  I'm sorry you feel alone.  If its any consolation I feel that way too, even with people around me.  How old is your son? x

  • Unfortunately the support available from the NHS is not very good post diagnosis. Our son is 5 and he gets additional support in school but there is no further intervention by the NHS or follow up to see how he is developing. I guess school do all that but it would be nice for parents to have some sort of support at home too.

  • Thanks for the responses. As you suggest longman we are waiting to see what she is like next time. Maybe her behaviour will be different? I doubt she is sceptical regarding autism as she was recommended to me as 'the person see' in our area on the nhs with regards asd. Maybe we caught her on a bad day? But if she is the 'go to' person for children on the spectrum I would hate to see the other doctors. 

  • Since my son have been diagnosed I feel So much alone as the father also left us and I don't have any family around. No support group in my Town to attend and have no one to speak to

  • 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.

  • Hi. Thanks for the link, but our issue isn't the lack of diagnosis. We have a diagnosis of autism from a private source and the nhs doctor accepted it. Our problem is getting practical help now that we have have the diagnosis.

  • Hello,

    Sorry to read you've been having difficulties. Please see our website page about getting a diagnosis: www.autism.org.uk/.../getting-a-diagnosis-children.aspx. You can also call our helpline on 0808 800 4104 (open 10.00am-4.00pm, Monday-Friday).

    Take care,

    Alexandra (moderator)