Fed up (understatement!)

Hi all 

Not sure why I'm posting, just feel so low and tired today.

We noticed at 2.5 that our daughter was showing signs of autism as well as sleep problems hv advised us to wait awhile before pursuing anything as daughter had complications after birth that we were warned could cause delays in development.

At 3.5 took her to gp about sleep and repetitive behaviour and diet, he laughed at me but referred her to paediatrician who agreed she was showing signs he asked gp to refer her to camhs so I waited gp it turns out never referred her.

At 6, school nurse got involved and got camhs to come out and see her they agree she needs assessment great! No they mess up referral and daughter is rejected due to the wording on her referral letter! School nurse stands by us sets up ehp gets us a support worker (didn't want) all to document everything to support re-referral.

Daughter is now 8 and still not sleeping she was making herself Ill (as well as me) tried gp again told they can't help. So I brought her melatonin gummies and it worked for the first time in years she was sleeping and happier in herself but school nurse found out demanded I stop and take daughter back to gp as it's best from doctor, so I do this and guess what they won't help and don't want her having them so we are all back to no sleep constant meltdowns. It just seems ludicrous that I am the bad one for doing something that actually helped my daughter and they do nothing! Apparently sleep deprivation is better for her! 

Sorry pointless rant I know just feel so lost 

Parents
  • Well done for getting it off your chest. We had melatonin prescribed, so it can be done.

    Have you tried changing your GP? You can register wherever. Did you try finding some people using melatonin locally? How did they do it, which GP, which consultant? You now need the real progress, the full diagnosis and EHCP. Who is the gatekeeper for EHCPs, camhs or paediatrician? insist on both referrals, use PALS complaint to smash some barriers and make progress.

    You also need support for yourself. Get a referral for yourself, your MH, some respite. One of the things you could do is carers needs assessment. If you don't sleep, it can't work. Do you have local carers organisation? see whether they have any advice ho to make progress

Reply
  • Well done for getting it off your chest. We had melatonin prescribed, so it can be done.

    Have you tried changing your GP? You can register wherever. Did you try finding some people using melatonin locally? How did they do it, which GP, which consultant? You now need the real progress, the full diagnosis and EHCP. Who is the gatekeeper for EHCPs, camhs or paediatrician? insist on both referrals, use PALS complaint to smash some barriers and make progress.

    You also need support for yourself. Get a referral for yourself, your MH, some respite. One of the things you could do is carers needs assessment. If you don't sleep, it can't work. Do you have local carers organisation? see whether they have any advice ho to make progress

Children