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Passed to another department again/ complaint about services

NAS39248

Hi,

As I have said previously on this forum I'm having issues trying to get my daughter assessed, I'm sorry for this moaning post but I am literally fed up and just feel so let down.

We have known since very early age that our daughter is autistic but didn't push for diagnosis when young as believed professionals would pick it up, however at 4 we had enough of her not sleeping so took her to gp who laughed at me, grudgingly he referred her to peadiatrics.

Peadiatrics were great they said physically she is ok but does need assessment for autism but that they have difficulties accessing services so asked gp to refer her directly,

Gp told me it was two year wait, so I waited not knowing that they had not bothered to send referral.

Got school nurse involved at 6 when I found out referral had not been done she got camhs in to see her and both agreed she needed to be seen at cdc for assessment, months building the evidence to support referral cdc rejected due to the wording on her referral letter! 

Spent ages gathering new evidence for re-referral only to be told she is now 8 and has to go to camhs so all new reports needed, got that together along with supporting documents from specialist health visitors and gp. 

School nurse and family support worker had meeting with camhs ( same guy that agreed she needed assessment at 6) to try and get camhs to see her asap. 

Yesterday I got the results of that meeting camhs won't take her as cdc are responsible for assessment until age 11! Apparently they take them at 8 for everything apart from autism so I have gone round in a circle again and still no closer to someone even seeing my daughter.

Am I wrong to be furious about this I feel she is just being passed around departments with no one wanting to see her. I really want to complain but all I can find is information on how to complain about treatment but no one has even bothered seeing her so that's not really applicable.

Sorry for the rambling I'm just struggling this morning 

Parents

  • I think it might be worth complaining about the referral process, outlining what you've been through, the unacceptable delays and the utter lack of clarity as to a way forward. 

    Do all of these services come under the same NHS trust?  If so maybe go through PALS in the first instance, but then escalate to heads of service or the Chief Exec if no joy.  Ask about appropriate services and waiting times, pointing out the lengthy wait you've already been through due to no fault of your own.  The local CCG will also have a complaints procedure and should be able to advise too. 

    Going round in circles is just adding to the tension and the referral pathway should be clear.     

  • in reply to Jenny Butterfly

    Thanks for the reply, yes they are all under the same trust I will try pals again but last time I spoke to them I was told they dealt with complaints about treatment and I'm complaining about lack of treatment so was basically fobbed off 

    Sorry if I sound like an idiot but who do you mean ccg?

  • in reply to NAS39248

    Hello again, I mean the local Clinical Commissioning Group who will have commissioned services in your area.  They will have their own complaints procedure, separate from your local trust.

    My initial approach would be to put it all in writing to PALS, copying in the relevant service heads, asking for clarification and details of waiting times, plus maybe also asking how these compare to national guidelines and emphasising the length of time already waited.    

    If there is no response or it's unsatisfactory, I would probably then escalate it in the order - Chief Exec, CCG, local MP, the local press even (depending upon how you feel about going public with it, of course).

    I appreciate they probably lack both time and resources and also that no one individual is likely to be responsible but, speaking as an angry parent myself, the priority is to gain access to appropriate services asap.  Their internal wranglings around referral pathways and limitations on services are best placed firmly back in their court, IMHO.      

  • in reply to Jenny Butterfly

    Thanks for clarification, I think I will try writing to pals including the reports and referrals and rejection letters hopefully it should prompt something! 

    My partner suggested the papers but I couldn't handle the stress let alone what I could do to daughter.

    If I get nothing from pals I will try the other routes you have suggested 

    Once again thank you for taking the time to reply to me it is really appreciated 

Reply
  • in reply to Jenny Butterfly

    Thanks for clarification, I think I will try writing to pals including the reports and referrals and rejection letters hopefully it should prompt something! 

    My partner suggested the papers but I couldn't handle the stress let alone what I could do to daughter.

    If I get nothing from pals I will try the other routes you have suggested 

    Once again thank you for taking the time to reply to me it is really appreciated 

Children
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