Something has got to change - but no-one cares.

[paulfoel]

On 5/4/2018 at 23:40, Wonderer said:

I don’t understand why CAMHS haven’t offered medication, when my son was really down his CAMHS therapist made us an appointment with the CAMHS psychiatrist who prescribed medication, it didn’t work out for us but she has monitored him every 4/6wks since October now to see how his moods are and wether we want to try meds or not again, she also liaises with his therapist in between appointments to see what she thinks, extremely supportive...Xx

CAMHS are COMPLETELY useless.

Like I said we paid for initial psych appt and consultant precribed meds, wrote a letter to GP, who prescribed them. We then had another follow-up appointment/med review when the consultant increased the dose. To be fair to the guy he did say "Look we've started things going but you really don't need to see me every time and pay the fee".

So last time my wife asked if CAMHS could speak to a psych and see if they were willing to continue on with his med reviews. Answer came back - nope he doesn't need to see psychiatrist just yet! Are you kidding me?

I could scream - hes been on the meds for months. It does make a difference. A consultant psychiatrist agrees with this (Forget his name but he seems like on of the top ones in the country - which is why he does private work I guess!).  But someone at CAMHS decides they know better.......

So my only choice now to allow him to continue on these meds and continue with a treatment plan that is working is to pay again (and it aint cheap!). Its not only the cost - this guy is 60+ miles away so son has to miss even more school to attend an additional appointment!

Its just crazy....

[Orwell1984]

Paul, maybe you've already tried this, but could you ring the national autistic society, ask for advice and signposting? 2 years of this is terrible. I paid privately (ASD consultant was signposted to me by the NAS) to get an assessment done for myself and it was done within a month. It was £600 but I have the diagnosis. Apparently the services that are available to those with an ASD diagnosis only exist for children. I don't know what those services are but whoever will be diagnosing your son will get all those into place. I think a private assessment will fast forward this situation for you. Please phone NAS and see what's out there. Relying on the NHS for diagnosis at this point is useless. 2 years is far too long

[Orchid2016]

On 04/05/2018 at 23:40, Wonderer said:

I don’t understand why CAMHS haven’t offered medication, when my son was really down his CAMHS therapist made us an appointment with the CAMHS psychiatrist who prescribed medication, it didn’t work out for us but she has monitored him every 4/6wks since October now to see how his moods are and wether we want to try meds or not again, she also liaises with his therapist in between appointments to see what she thinks, extremely supportive...Xx

My daughter is sad all the time and we have to put up with crying episodes every day, multiple times in some cases. She gets hysterical and shouts at my 4 year old. I have told this to CAMHS and because her therapy is starting next week been told to give that time and if it isn’t working they will review treatment options. I think it’s very much a postcode lottery to how CAMHS operate and your experience shows the inconsistency in treatment. Unfortunately there’s no way of knowing which medication is right and how they will respond to it, all trial and error.  Perhaps the NHS are afraid of giving out the wrong medication or just haven’t got the resources for many children to see the psychiatrist so have to limit it for those who are suicidal or had breakdowns. My daughter is a nightmare to live with right now, it’s made it a very unhealthy environment to bring my 4 and 5 year old up in but due to postcode lottery I guess we have to ride this out until the NHS give her the medication she needs. Hopefully she doesn’t have a breakdown before then. 

[Orwell1984]

The NHS is broken. Majorly leaky bucket. Feel sorry for the good eggs that are trying their best, but  for acute mental health problems the waiting time factor is not on the NHS' side. Hope things will change.

[paulfoel]

On 04/05/2018 at 23:40, Wonderer said:

I don’t understand why CAMHS haven’t offered medication, when my son was really down his CAMHS therapist made us an appointment with the CAMHS psychiatrist who prescribed medication, it didn’t work out for us but she has monitored him every 4/6wks since October now to see how his moods are and wether we want to try meds or not again, she also liaises with his therapist in between appointments to see what she thinks, extremely supportive...Xx

Its nuts. We've paid for two visits to the psych - £200 a go. As soon as GP gets report they just do as he says.

Hes been good about it and said "look you don't need to pay ask CAMHS to review his meds from now on". We asked CAMHS last time if they're own psych could take a look and just do med review (after all the initial hard work is done!). They actually said no theres no need for him to see a psych just.

OMFG - they guy we saw is one of the experts in the country on teenage mental issues (which is why he gets to charge £200 I guess) and he says medication is appropriate. And its working for son. Yet CAMHS think they know best. Honestly, I could throttle someone at CAMHS sometimes!

 

[Wonderer]

6 hours ago, paulfoel said:

Its nuts. We've paid for two visits to the psych - £200 a go. As soon as GP gets report they just do as he says.

Hes been good about it and said "look you don't need to pay ask CAMHS to review his meds from now on". We asked CAMHS last time if they're own psych could take a look and just do med review (after all the initial hard work is done!). They actually said no theres no need for him to see a psych just.

OMFG - they guy we saw is one of the experts in the country on teenage mental issues (which is why he gets to charge £200 I guess) and he says medication is appropriate. And its working for son. Yet CAMHS think they know best. Honestly, I could throttle someone at CAMHS sometimes!

 

Oh no! Sounds like ur having a terrible experience with them yet I can’t complain, must be luck of the draw when it comes to them, some clinics better than others.

[Wonderer]

21 hours ago, Orchid2016 said:

My daughter is sad all the time and we have to put up with crying episodes every day, multiple times in some cases. She gets hysterical and shouts at my 4 year old. I have told this to CAMHS and because her therapy is starting next week been told to give that time and if it isn’t working they will review treatment options. I think it’s very much a postcode lottery to how CAMHS operate and your experience shows the inconsistency in treatment. Unfortunately there’s no way of knowing which medication is right and how they will respond to it, all trial and error.  Perhaps the NHS are afraid of giving out the wrong medication or just haven’t got the resources for many children to see the psychiatrist so have to limit it for those who are suicidal or had breakdowns. My daughter is a nightmare to live with right now, it’s made it a very unhealthy environment to bring my 4 and 5 year old up in but due to postcode lottery I guess we have to ride this out until the NHS give her the medication she needs. Hopefully she doesn’t have a breakdown before then. 

Aww hopefully if the therapy isn’t giving her any improvement they will refer her for medication. I know that they are VERY careful about medicating kids so I’m sure that’s why there’s so many issues around accessing it. Hope ur daughter gets some relief soon xx

[Orchid2016]

Daughter had been seeing therapist usually once a week, when she doesn’t see her one week she gets worse. She has managed to get back to school, a struggle but she isn’t able to do any homework. I predicted when she first started seeing her therapist 3 months down the line after a trial, the medication talk would come and bingo. However we’re on a waiting list for her to see a Phychiatrist despite her stalling with therapy. Her therapist is very keen to push it as urgent so she recovers ASAP (doing GCSES now) but I’m sure there’s other urgent cases to.  She also said with her type of OCD it is harder to recover from therapy alone. So if I’d have seen the same person as Paul did they would have prescribed her meds from day 1 but CAMHS would not have done despite any private report and would have made her wait for 3 months or therapy before plan b of medication and therapy anyway *sigh* this is what gives NHS bad name, so slow to act on things as they have targets and framework to follow.