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refused treatment

(29 Posts)

my dd was diagnosed a couple of years ago with asd, ptsd, personality disorder, amongst other things, we tried to get her some treatment with camhs at first but they don't treat this, so eventually they transferred her to adult mental health for treatment, she went to be assessed a couple of weeks ago after waiting a year on the list,now they are refusing treatment as my dd has asd and they don't treat ppl with asd, we have asked if disability mental health can treat my dd, we have been refused treatment by them as my daughter is to clever her IQ is to high, I don't know how to get my dd treatment that she desperately needs. it's impacting on all our lives as she isn't sleeping as she's out of meds(gp can't prescribe her med) and dd keeps trying to self harm. i'm on suicide watch 24/7

LEMisdisappointed Fri 13-Sep-13 09:10:21

That just sounds so stressful I dont have any advice so bumping for you. You could try mind or other mental health advocacy services keep fighting x

VoiceOfRaisin Fri 13-Sep-13 09:12:16

Try approaching a Governor of your local NHS mental health trust. You should find them listed on the website and there will probably one specifically allocated to Young People, or one for your geographical area. Good luck.

Pollywallywinkles Fri 13-Sep-13 09:41:19

Go back too your GP and ask what happens now.

went to gp yesterday, also my dd sw phoned up and asked to be pointed in right direction for treatment, was told no treatment available as dd falls between the cracks and gp cannot write prescription for dd meds as the pct won't allow him to, has to be done by amhs who won't do it as they can't offer treatment to ppl with asd

made lots of phone calls today, I was told that no treatment is available for dd in our area, was told if we move 50 miles away dd will get treatment, and our area are looking into treating ppl like my daughter but it might be 5yrs away.so we either have to move house or wait.

LEMisdisappointed Fri 13-Sep-13 17:31:45

Am disgusted on your behalf, you need to write to your MP and kick up a stink about this

Moxiegirl Fri 13-Sep-13 17:37:21

That doesn't sound right, but my dd is under 18 (bpd/asd) so I only have experience of that but she is in a psych unit so certainly mental health will treat asd patients for u18s!
Sounds like the learning disability team wouldn't help because she has an iq over 70 but adult mental health team should be involved?

CaffeineDeficit Fri 13-Sep-13 17:42:11

Given that your area can't provide a local service, would your DD qualify for a referral to a national service for people with her type of difficulties, such as this one http://www.national.slam.nhs.uk/services/adult-services/nds/? You may find your PCT take a lot of persuading, as it won't be cheap, but given your local services are unequivocally stating that they can't meet her needs, I suspect a good advocate (MP, MH advocacy service etc) might be able to help them see sense.

CaffeineDeficit Fri 13-Sep-13 17:43:02

Sorry - link fail - try here

Pollywallywinkles Fri 13-Sep-13 17:45:12

Someone should be taking control of this and quickly. I am also disgusted on your behalf that the GP and SW have not found a way forward if the necessary service is not available in your immediate area.

If you are in England your local CCG should be commissioning mental health services, so it may be useful contacting them. I also second writing to your MP as they will get things moving, but it may take a little time.

In the meantime look after yourself.

thanks everyone, I just feel useless, my dd blames me and thinks i'm not doing enough to get her treatment, going to recharge my batteries over the weekend and come out fighting again Monday morning.

HoopHopes Fri 13-Sep-13 19:25:14

How old is your dd? It can be hard to access help, many adults fall through gaps as well. I do not understand why one dr somewhere cannot at least prescribe medication, which sounds like a priority to sort. Perhaps if your dd has a sw you can ask the sw to arrange a meeting where you can state how she will deteriorate without medication.

It might be with posting on the special ed needs section of mums net as there must be parents there who get medication prescribed and see how they get it?

dd is 19, her sw has had meetings and phone calls with amhs, and pals, gp, pct, and all she gets told is no treatment as dd has asd. she's been asking to be pointed in right direction to get treatment but no treatment available and no meds as she has to get meds from amhs

Pollywallywinkles Fri 13-Sep-13 20:34:59

Can the previous prescriber of her meds do another prescription?

Havea0 Fri 13-Sep-13 20:40:12

If all else fails, go to the media.

HoopHopes Fri 13-Sep-13 21:42:45

If she is 19 is she not now too old for CAMHs and therefore needs to be treated by either her gp or if the gp wants other involvement he needs to refer to appropriate adult services. They do vary in each area and it does not necessarily mean the CMHT. They could have services for adults with learning difficulties or for personality disorders etc.

Have you contacted Pals and thought about an official complaint?

HoopHopes Fri 13-Sep-13 21:43:35

Sounds like meds is the first thing to get sorted. Would a one off private appointment help you to get meds?

still trying to get dd sorted, but now i'm torn into bits, don't know what way to turn, amhs have requested a meeting on Tuesday with me and dd, (dd can't go out on her own) I went with dp to hospital for 3 month check for cancer(only finished therapy 3 months ago) they think cancer is back in other parts of body, he has an appointment at same time as dd, who do I put first? I tried to change dd appointment but they won't, dp can change his appointment but will have to wait 2 weeks for another appointment,
I feel so two faced as i'm trying to hide all this from dd till we have answers for her, don't want to worry her more iyswim. she was so scared when dp was diagnosed earlier on in the year she tried to hang herself, I just want to run away from all this and sit and cry I can't take much more.

VoiceofRaisin Thu 19-Sep-13 10:00:46

Gosh, you have so much on your plate :-( I suspect you need to go with your DD to her appointment as she actually can't go on her own, and then race back to support your DP after he has had his news (which hopefully will be good). Postponing DP's appointment by 2 weeks sounds like it would mean 2 more weeks of worry and so is probably not advisable. Can your DP take someone else with him? A grown DS, or a best friend, or brother perhaps?

It's great news your DD at least has an appointment though. Hopefully then things will be fast tracked.

Hugs.

all I have is dp and dd, dp only has his dad but his dad is late 80s and can't support dp, i'm so scared as when dp was diagnosed with cancer earlier this year they said if it comes back in chest area it will be terminal,as it was such an aggressive form of cancer, (went from golf ball size to rugby ball size in weeks) now they say they think it's in chest, dp will not discuss results with me, he sees it as protecting me from stress

Pollywallywinkles Thu 19-Sep-13 17:19:03

Did you explain to them why you needed DDs appointment changing? If so, their behaviour is disgraceful and worthy of a complaint. Can you contact PALs about this?

If DP doesn't want to discuss results with you, does he actually want you to attend this appointment with him? His appointment should not be delayed.

Could you speak to your GP or DDs SW to see if they can help this matter be resolved to allow you to attend both appointments?

My heart goes out to you, now having clashing appointments to deal with on top of everything else.

OpheliaMonarch Fri 20-Sep-13 02:12:12

I am so sorry for all the terrible stress you are under, it sounds just awful.
Hugs if you want them. thanks

I know you have an appointment for your DD now, but was just wondering about something my DH and I tried.

I had all sorts of problems getting PTSD/OCD/depression sorted. Our GP told us the only way was with our local mental health unit, they were useless, and we can't keep paying privately as it is so expensive.

Anyway, DH looked up trauma treatments on the web and found that our local University has a treatment programme for sufferers of PTSD, they treat people and do research at the same time.

When we approached our GP they did not know the University ran any such trauma treatment, but they have finally agreed to fund me so that I can attend.

I know it's a long shot, but maybe your local University has a similar/ more relevant research programme for your DD.

They are researchers, so you have to be happy with that, and I haven't attended yet, but in the absence of little to nothing anything's worth a punt I think.

Again, I know it's a long shot, but I saw your thread and thought I should at least mention it.

Hope things improve soon and in the meantime try to make time to take good care of yourself. x

thanks oph will research it, got to get dd emergency gp appointment for today as we had to go to out of hours gp last night as dd was so distressed, he gave her sleep tabs for home, and something to calm her down while we was there,(just so they could talk to her) gave her sleeping tab about 10-30 and it didn't work till 5 am. she admitted herself to a unit about 3yrs ago and she couldn't cope with it, it made her worse, so they won't do that again. so will look at the research. the last mental health assessment dd had put her as very high risk suicide, it scares me in case I fall asleep or I take my eye off of her.

OpheliaMonarch Fri 20-Sep-13 18:45:37

So sorry everything is so hard right now.

I know it's expensive, but have you tried getting a psych referral from a private therapist?

I know it's ridiculous that you should have to and it is horribly expensive, so might not be possible.

We got an appointment privately with a consultant psychologist, we just found her on the Bupa approved list (you don't have to be a member) found her website and contacted her directly.

Within a couple of appointments we had a diagnosis, which meant when we went to the NHS they had to help, we could then stop paying the consultant psychotherapist we'd been seeing.

In your case, which I realise is totally different, I just wondered if you could tap into their expertise.

I know you have a diagnosis, but they might give you a referral, and maybe you could bypass all this NHS rubbish.

Just an idea.

This is the bupa list we used, we went through till we found one near enough, who had a website.

finder.bupa.co.uk/

Is it okay to PM on MN? If not just ignore this last sentence smile

Take care of yourself.

tbh we can't afford anything at the minute, I can't leave dd so can't work, dp had only been back at work for a month, as he had to have surgery in February then therapy for his cancer,, we have been living on £90 a week since feb, all our savings went on mortgage etc, now dp is off work again,
had a very bad day yesterday, took dd to gp, he was so nasty, he told us if dd wants therapy and counciling I can do it, then asked why disability team can't treat her, dd replied because I am to smart, his reply was if you was smart you wouldn't be on meds, that makes you stupid to me. i'm going to look for a new gp for dd and myself. as this isn't first time he's been nasty. we have been in this town for 5yrs, he told me to go back to the town I came from says I can't expect him to carry on treating me. wouldn't refer me to specialist care I was having before I came here.(I have heart condition)

pinkfelttippen Sat 21-Sep-13 08:38:17

Find a new GP. Let DP go to his appointment on his own and take DD to hers. If no joy from DD's appointment, are there any ASD charities that can a) offer you all support, and b) help you to get help?

Pollywallywinkles Sat 21-Sep-13 09:02:26

That is disgusting and you need to complain. Speak to the practice manager in the first instance. Is there another doctor at the practice you can see? If not, you may need to find another practice.

You can't continue in this manner and need some support. There are some patient advocacy services out there who may be able to help you.

Pollywallywinkles Sat 21-Sep-13 09:28:50

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