Fed up (understatement!)

I would call the NHS local PALS team and speak to the duty manager and clinical lead at your local CAHMS to make a informal complaint as sometimes they don't take you seriously enough and the NHS is going downhill as they just don't care. Good Luck and keep fighting

Thanks for the reply, but melatonin can't be prescribed by primary care physicians in Sussex, I didn't believe the gp so they actually showed my their prescription guidance on it. Camhs or peadiatrics can give it. 

She has now been taken on by specialist health visiting team who are putting together a sleep plan for her based on behaviour and routine (I know it won't work as have tried all that before) also half their stipulations interfere with her stimming routine, and they are insisting she has a bath to relax each night but she is terrified of the water so has meltdown can't see how that is going to relax her! But when they assess for improvement after 8 weeks they can then ask for melatonin for her. So might get somewhere with that. 

I have emailed local health watch with all the details so hopefully they can give me some ideas

I am just frustrated and run down and with all the other problems it just makes me want to scream! 

Thanks for the advice 

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

I think you need to write to the PALS at CAMHS and log formal complaint or a informal complain to get a manager to look at this for you. Maybe you can contact the local paed you were with and speaking to you GP about esculating the matter for you and getting another referral sent to CAMHS Peadtraician or community peadtrician at your local hospital. And getting in contact with senior manager at CDC to speak to someone about the issue as matter of urgency and esculate via that way. As they wont listen until you call them again and again and you need to put your footd own and raise complaints as this is the only way that they will get things done,. I would speak to your gp to raise this and get another referral sent as a matter of urgeny. as this is beyond a joke. I had to do a similar thing and finally I ended up logging  complaint and im still waging a war with them

Nope. Camhs have just sent us back to cdc with no one any closer to helping her.

Have you had the melatonin prescribed from your local pead or local cahms?

I'm speaking to mine about melatonine next week. I'm in the east midland and it's good to know it can be done

Worth adding that the UK has similar problem with methadone supposed to get people clean but they end up stuck on that instead 

Tramadol is handed out very freely on the UK as well not as easy I know but docs here have no problems giving adults pain killers and sleeping pills but won't help kids, at least that's what I find, I currently have pain management trying to double my doses on tramadol stick me on antidepressants and tranquillisers as I'm in pain and can't sleep

 Obviously told them no as I can't take sleeping pills as my daughter doesn't sleep and I get the lecture! 

What appears good about the US system isn't necessarily good - look up their problems with Tramadol and subsequent heroin addiction for instance.

NAS50003 said:

cystic fibrosis are being denied that drug

It's about resources.  Funnily enough £100 000 per person per year is an enormous amount of money.  There's a lot of things that can be done with that amount of money that can save more people.  I happen to know something about cystic fibrosis - a lot of my childhood friends died in their early to mid 20s.

Don’t be sorry. It’s better out than in, I always say

I have been chasing them round and round since she was 4, the main problem seems to be that each department say she needs to be seen by another department so no one takes responsibility for actually treating her! 

At least the gp I saw yesterday was very supportive and witnessed some of the behaviours I have expressed concern about she also took copies of my sleep logs and agreed it's not good enough she is pushing camhs to see her asap and recommending that they start treatment for the sleep problems so fingers crossed 

The local peadtrician should be able to prescribe melatonin as I had to call my 5 yr olds peadtrician every day as that is the only way they will listen to you if you leave they won’t get things rolling, my 5 year old was prescribed small dosage of 2mg then all the way to 7.5mg of melatonin’s tablets which worked and their is a liquid format too , I’m now getting other issues like anger with him and I’ve had the greatest support from my Gp based in the Midlands , just keep fighting and chasing your local peadtrician and cams for better proactive results as nhs do have tendency of not taking parents seriously 

The local peadtrician should be able to prescribe melatonin as I had to call my 5 yr olds peadtrician every day as that is the only way they will listen to you if you leave they won’t get things rolling, my 5 year old was prescribed small dosage of 2mg then all the way to 7.5mg of melatonin’s tablets which worked and their is a liquid format too , I’m now getting other issues like anger with him and I’ve had the greatest support from my Gp based in the Midlands , just keep fighting and chasing your local peadtrician and cams for better proactive results as nhs do have tendency of not taking parents seriously 

I hope so to, although it was a massive relief to have a doctor listen I won't get my hopes up to much as we have been let down so many times, now I just need the school and school nurse to put as much on paper as they can to support it and maybe we might get somewhere I really hope so! Last night was awful for sleep think we an hour and a half!! 

If you look in America a lot of items are easily available. Is it because there health care is private. The government isn't signed up to certain legislation as in this country that stops us from having access to items that are ready available in the states and have had testing and you can buy at a reasonable price over there.

I personally believe that if you break down an illness into into sections, components it's easier to handle. Vitamins, exercise, supplements and so on. Might not cure but the journey could be a lot smoother.

It's so annoying that children with cystic fibrosis are being denied that drug. politics and medicine ..they possibly all go hand in hand with huge profits whilst people's lives are deemed unworthy of them.

Sorry to moan!

Feels better though.

Really hope that this has got the ball rolling with getting a diagnosis and the necessary support package

Thanks for the reply, Scotland is slightly different. Spoke to different gp this morning and she was in total agreement with me and also has little doubt after spending 10 mins with my daughter! (daughter was having meltdown as out of routine ) she was appalled at how we have been bounced around and took copies of all my sleep journals and behaviour logs and is logging complaints with all departments that my daughter hasn't been seen. She is also pushing camhs to see her asap. She is supporting our request for melatonin but it has to come from paediatrics first. 

Hello @ NA39248,shocked to hear that you haven't received a prescription for Melatonin-my GP prescribed this for my daughter 2 years before her diagnosis of ASD-we live in Scotland-not sure if this makes a difference ,could be that a change of GP would be best.In addition to prescribing Melatonin,my GP made a referral to Paediatrics and CAHMS-we were both in agreement that two lines of assessment would be best-at this stage there was no mention of ASD-Shocking to know that your daughter has not had a formal assessment-You are doing the right thing by keeping a log-the more detail the better!(Seeking an independent way to help your daughter-no wonder!)X

Yeah I found that out after all this kicked off, I knew they were produced in the states but were being sold online by a UK company so thought it was OK. 

I have got a large file prepared for them containing all the letters from paediatrics stating she needs assessment aswell as one from her paediatrician from early childhood stating that it was likely she need further assessment as she got older (she was 6 months old then) as well as all the rejection letters for reasons beyond us. I have also included 6 months of sleep journals 2 months of behaviour logs her cast questionnaire and information from school! May have gone a bit overboard but at least I'm prepared. 

Thanks again for all the support I was just having a low day, stupid thing is I have literally just come from an appointment with pain management and got lectured about the importance of sleep they even offered me tranquillisers! I did explain that it was my daughter keeping me awake, it's just beggars belief that they will not help.