View Full Version : The Maudsley Hospital
My daughter's referral to the Maudsley Hospital's Centre for Anxiety and Trauma has been turned down because she is also on the autistic spectrum and they don't "do" anxiety and ASD. It would have been good to know this in August when the referral was initially made. We have been advised to go back to our local services....
Hell no. At least we now know after weeks of waiting.
Thanks to those of you asking about the referral. I'm not anticipating any replies but just wanted those interested to see how things have developed.
We'll just have to explore other avenues after Christmas
Pulisa so sorry to hear this, most definitely not the outcome you were looking for.
I don't have any knowledge about this but just wanted to show my support.
Elen
pulisa
knowing you, I would imagine that you are not exactly surprised at the response.
pulisa
knowing you, I would imagine that you are not exactly surprised at the response.
No, I'm not, Ricardo. It was worth a shot though. Think of all the money wasted by this costly Panel deliberating on a referral that was never going to happen though...
Thanks, Elen. We'll just have to get on with it ourselves.
Sunflower2
24-11-15, 17:56
Really sorry to hear this.. You half expected this outcome though? There must be somewhere in the UK that does both Asd and anxiety, I imagine it's very common!
I hope that your daughter doesn't take it too hard either xx
Really sorry to hear this.. You half expected this outcome though? There must be somewhere in the UK that does both Asd and anxiety, I imagine it's very common!
I hope that your daughter doesn't take it too hard either xx
Her case is a complex one hence the Maudsley referral as local services were inadequate. We did give them a good 14 months but it was doing more harm than good.
Superworrier
24-11-15, 19:53
I am so sorry to hear this mt darling x
This is awful please know you have my support and I'd I can help in anyway I would be glad to xx
MyNameIsTerry
25-11-15, 06:14
I'm sorry to hear this, pulisa.
And the NHS dare moan about money! First your GP surgery doesn't know with CCG they are under, which is like saying they don't know the local hospital, now this mis managed sham.
The NHS has been spending many millions on bringing in private therapists & counsellors as there was a question about it in the House of Commons a couple of years back. Could you take the funding and bring in someone private who has ASD experience? That update by NHS England seemed to suggest any approved funding could be used to chose a provider and it may not be a public contracted one from what I recall.
Unfortunately the funding has not been granted, Terry and my daughter won't allow me to spend any money to go privately as the pressure on her for the therapy to succeed would be too much for her-and she of course has this fear of spending money anyway.
We'll go back to DIY therapy-it's reliable and available.
Best of luck to you, hon. Keep us posted, and we'll keep our thinking caps on, too ... xo
Thank you, Marie. We have been offered a GP appointment to discuss our "options" so that was unexpected. I didn't expect any response at all.
My daughter has now been turned down by our local Community Mental Health Recovery Services because in the past she has been seen by the Learning Disabilities Mental Health team (which was disastrous). The referrals criteria for the latter has now been changed so any potential client must have an IQ below 70.We specifically pointed this out to the GP and her letter to the CMHRS was very clear as to why we should not be referred back to the special needs unit. They still did it..
So our options are going private (spending money is a huge problem for my daughter-even more so when the pressure to succeed in therapy will be overwhelming), going back to the learning disabilities team (over my dead body and her IQ would rule her out) or good old me.
I am awaiting a call from the CMHRS but something tells me they won't be calling back. I have told the GP that I want all this recorded on my daughter's records. It is not her fault that she has been rejected because she falls into that black hole between the neuro normal and special needs.
Sunflower2
18-01-16, 12:31
That's really a shame to hear Pulisa.. Is there any way you can work around the issue of money so to access private therapy? You wonder how these places manage to function at all with their lack of management and common sense!
So sorry to hear this Pulisa.
Your daughter is so lucky to have you. Imagine if she had to deal with all the rejection on her own ? Both you and your daughter deserve access to specialist treatment.
What good are so called specialists if they can't deal with complex cases. Surely this is what they are trained to treat?
I think it's again a question of ticking the right boxes and if you don't you are left to your own devices. Now if she were to turn to drugs or alcohol that would be a different matter of course.....:whistles:but you don't get any prizes for trying to get through each day no matter what (as you know only too well) xx
I think we would have to try to access a specialised private therapist, Kimberley, in view of her diagnosis and the approach that would be needed.This would be hugely expensive for a course of treatment. Her fears regarding spending money extend to me as well as to her. I will work on her as regards trying just one session but I'm not sure how much I can do-I will need to tread incredibly carefully.
Sunflower2
18-01-16, 13:47
As Carolin said, she is extremely to have you and be such a support to her. Keep us updated on how you get on! Xx
Thanks, Kimberley. I will let you know what happens xx
Wow, this sounds so frustrating. As others have said, she is so lucky to have you advocate for her.
I've heard of similar happening here. Somebody I know with a 20 yr old son on the ASD spectrum ...was turned down by developmental disabilities services, but also turned down by dept of mental health and addiction services because of the ASD diagnosis. He graduated a specialized high school already but needs help with maintaining work. Unfortunately the services won't help.
I cant understand it really. You are doing so much and keep hitting dead ends. I wonder if a private therapist could offer a sliding scale for services based on income?
Just sending positive thoughts and virtual encouragement that you find ways to help your daughter without all the apparent "politics".
Positive thoughts
Wow, this sounds so frustrating. As others have said, she is so lucky to have you advocate for her.
I've heard of similar happening here. Somebody I know with a 20 yr old son on the ASD spectrum ...was turned down by developmental disabilities services, but also turned down by dept of mental health and addiction services because of the ASD diagnosis. He graduated a specialized high school already but needs help with maintaining work. Unfortunately the services won't help.
I cant understand it really. You are doing so much and keep hitting dead ends. I wonder if a private therapist could offer a sliding scale for services based on income?
I doubt it as we would have to go to a recognised private therapist
in London who wouldn't give a toss about personal circumstances . I think the idea of my daughter imposing pressure on herself for the therapy to succeed would be more worrying for me as she would consider it an excessive amount of money "wasted" if no progress was made.
It's a difficult one but thank you all for your good wishes. Much appreciated x
MyNameIsTerry
19-01-16, 04:43
I'm really sorry to hear the lack of any support you are getting off them for your daughter, pulisa.
When the system is just against you I don't know what you can do other than fight them all the way or bring in people they give a toss about like MP's or the media. Sadly, this is one of the arguments for not even having the NHS, the fact that when they are against you, you are stuffed big time. They actively breach discrimination laws and no one seems to care.
Given this the complicated nature, anyone private is going to be a specialist as you say, so it's going to be big money. I really don't know what to suggest but I think with your experience you know that probably no one can on here. So, just know we are here to support you, if nothing else :hugs:
Thank you, Terry. I'm not expecting anyone to have any answers really. I'm posting this because I think it's important to be aware of how the system lets down people who don't conveniently tick the right boxes. I'm sure there are many people with diagnoses who don't fit into the right mental health category for appropriate help-I just never anticipated this to begin with.
I need to protect my own mental health in order to take this on and I'm very much aware of this. Thank you for the offer of support-I'm not going to pretend I won't need it!!
MyNameIsTerry
19-01-16, 09:05
You're right, it lets a lot of people down. But I just don't understand how in this year we still have a lack of connection between anxiety & autism...it's like anxiety & IBS in that respect, I've never heard of autism without anxiety though so it makes even less sense too me!
I wonder whether it's just a convenient excuse to hide behind. Whatever it is, it's just not acceptable. We keep seeing these programmes on TV about it but we don't see any of this. The NHS must invest a lot of money in it's image.
Many people with autism display anxiety when they are not able to perform their rituals. It is linked in with ritualistic behaviour and not a stand-alone anxiety disorder. My daughter has a dual diagnosis of ASD and OCD (the Maudsley accepted her aged 10 but I did have the clout and backing from her school which was one for autistic children) and she had some CBT at the Maudsley for OCD.
The problem lies in the fact that she falls in the "black hole" between mental health mainstream and special needs services. Able people with ASD and severe anxiety fare worse as the anxiety and awareness is far more difficult to cope and live with than the ASD side of it. Being on the higher end of the ASD spectrum makes things far more complex for the person. There is not a lot of publicity about this-most people like this live in their bedrooms. It is up to people like me to do something about it and I will.
MyNameIsTerry
19-01-16, 10:11
That's an awful way to exist. I can feel a little of that as someone who has felt trapped no matter where I am, and it can be worse at home for many of us. I know how powerful obsessive thinking can be, but that it a different thing where it's yet stronger and more ingrained and obviously can't be understood without feeling it.
I've often wondered about the link between intelligence and emotions.
I hope you do get somewhere with this.
I think I have. I managed to get the referrals manager on the phone (he was just about to ring me:whistles: of course) and I asked him how my daughter had been "assessed" as being unsuitable for the CMHRS. He said that she had been to a meeting where the decision was made whereupon I said that no one had met her and she had been rejected on the basis of an ASD diagnosis-and of course he would know just how extensive that spectrum was....
The outcome was that he is going to have a chat to the consultants about her again. I said that she just deserved a chance and if they still felt unable to help her then that would be acceptable.
I'm glad I persisted and kept on ringing. Don't let the system give you cr*p.
She may get rejected again but at least we tried.
Sunflower2
19-01-16, 18:27
Go you Pulisa! I bet they weren't expecting that! At least now you will know that you have given it a good chance.
MyNameIsTerry
20-01-16, 04:40
That's complaints management 101, 'I was just about to...' :doh:
It is worrying that people in charge of such important things can be so pathetic at managing basic issues like whether a meeting has ever taken place with the patient.
It's worth a try, at the worst you are only where you already are but hopefully something can come of it.
Fingers crossed that you and your daughter now get the support and treatment you so badly need.
A good lesson to learn.... never give up . i admire your dedication to your daughter so much Pulisa.
You would do the same for your son, Carolin. As you know, there are a lot of incompetent people in charge of services aimed at vulnerable people. I just want to expose the shortcomings and am lucky as I've never had a problem with confrontation. I realise that I'm very fortunate in this respect.
Thank you all for the supportxx
Pulisa, I really don't know where you get your strength from; maybe anger has something to do with it, but I do hope you get a result. You deserve it.
But, on the other hand, you shouldn't really have to go through all of this.
Make sure you take care with your own health too. x
Amazingly my daughter's psych referral has been arranged for May 4th!
Until we've been I'm not expecting too much but at least it's progress.
Sunflower2
22-04-16, 13:24
Pulisa this is great news!! I'm certain I don't need to say to be firm with them and squeeze everything out of them that you can :D
Don't worry, we'll get our pound of flesh!:D
MyNameIsTerry
23-04-16, 05:13
http://www.bestemoticon.com/smiley/respect/prosterne.gifhttp://www.bestemoticon.com/smiley/respect/prosterne.gifhttp://www.bestemoticon.com/smiley/respect/prosterne.gif:whiplash:http://www.bestemoticon.com/smiley/respect/respect1.gifhttp://www.bestemoticon.com/smiley/respect/respect1.gifhttp://www.bestemoticon.com/smiley/respect/respect1.gif
I'm sure you will keep them on their toes! :biggrin:
Good to hear it's finally coming through.
I may give the impression of being strong but I'm certainly not in control of my own issues. I want to give my daughter the chance for someone else to help her and I just hope that this new therapist will "get" her and be able to help her manage her overwhelming fears which have taken over her life. Any improvement will be worth the struggle to get her accepted for appropriate psychological therapy-and it has been a struggle!! It's been a disgrace how she has been rejected from mental health facilities because she is autistic/too complex/not low-functioning enough whereas most "neuro normal" get accepted at the drop of a hat.
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