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Asking to be referred out of area


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Where I am, there are no services for diagnosing adults with Autism. The best we can get is screening done by CMHT. I was later informed that he's not qualified to assess me and doesn't know of anyone who is.

 

The Autism Act 2009 states that I'm entitled to a diagnosis and support.

 

I saw a GP last year who claims I don't need the diagnosis. The lack of diagnosis and therefore, support, is causing me a lot of problems. The local NAS support group are unable (as mentioned in an email to me) to provide me with the help I need.

 

University won't help me get a diagnosis. Their argument is that it's medical and not a learning disability. The lack of a diagnosis is affecting my ability to learn and carry out my studies to a high level because of the refusal to diagnose me, which means I can't get the support I need.

 

I can't afford to go private either and I have heard that some organisations (such as DWP) claim that people only get a diagnosis privately to get benefits, etc. Therefore, a private report isn't accepted as valid. Yet, according to a lady who does a private diagnosis, she has to involve the GP.

 

So, it looks like I'm going to have to write to my PCT to ask them to send me to Southampton. Many places, such as Swindon, don't accept people from other areas.

 

I have started to write a letter. But am not 100% sure what I need to write. Can someone give me some advice on what to write please? I have quoted the Autism Act and have explained what happened before. But I am struggling to explain why exactly I need a diagnosis.

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  • 2 weeks later...

Hello Nystagmite,

 

We are not in the same part of the country but we do share the same frustrations.

 

I am having the same difficulty with a member of my family and once again, there are no support services available as we live in a post-code lottery where services have been cut.

With that said, have you contacted the Autism society to check out any support groups within your area? There maybe someone there who could help you and/or guide you towards people who could help you write the letter you need. This maybe the quicker route.

An alternative or indeed an additional option might be to find out your local MP's name and surgery details.You can locate these on the web. Go along to meet them and explain your situation and see what they can offer you, or look into for you.

Do you have an 'Advocacy Service' available in your area? This is usually a free service albeit, they maybe a little stretched on resources but they can make calls on your behalf, attend meetings with you to support you, they can write letters for you etc, but I suspect this may be the slower route.

 

If you do not feel the GP you saw last year is helpful, is there another one at the practise you could go and see? This is where I think the support groups might be able to help you and suggest ways or people who can help.

 

Please do not give up because one GP is useless. These are usually people who do not understand or accept the condition so they dismiss the diagnosis. They are not all the same - Please persevere and if necessary consider changing your GP.

 

I am not qualified in this topic, just merely the parent of an adult with suspected Asperger's Syndrome and probably just as frustrated as you are for the lack of support or services available, but I am prepared to fight what is rightfully ours.

 

If I can help further I will but like I say, I have no medical background other than being a parent who is willing to support and share experiences and information on a sensitive topic.

 

Good luck and keep me posted.

 

Shelley

Santander PPI X 2 **WON** claims on behalf of son (Oct 2010/ Mar 2011)

Citicard O/H (PPI) - **WON** Compound Interest Dec 2011

Citicard O/H (Charges) Bailiffs sent in August 2012

Barclaycard - **WON** Compound Interest Oct 2011

Monument - account information being sought for OH

Citicard - self - N1 submitted August 2012

Barclaycard - self - **WON** damages for non disclosure/information now rec'd. Aug 2012

Barclaycard - relation - Failed SAR sent 29/09/11

Halifax SAR sent 18/08/2011 for relation

LTSB - SAR sent 09/08/2011 for friend

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Hi and thanks for your reply.

 

I do attend a local support group and we (apart from the one or two who either went private or got the diagnosis as a child) are all in the same situation.

 

I've seen 2 GPs about this. The first is a trainee and said he doesn't where to send me, spoke to his adviser and I got sent to CMHT. I had two appointments with them, a lot of issues with getting information from them and was then informed that he can't do a diagnosis and doesn't know who can. Why it took him 7 months to tell me this, I really don't know.

 

Another GP claims that the screening is enough. But if anyone read my letters from CMHT, they'd see it says that I might have it. That is, they can't tell for sure whether I've got it or not. The GP also claimed that you're either Autistic or you're not. That's not the point. I don't have a proper diagnosis at all.

 

My MP was useless. I wrote to him to ask about getting my records; as I was refused with no good reason. (they can be refused due to harmful information) I've not heard anything since. I've contacted PALS and haven't had an outcome from them yet. The last I heard, CMHT blamed me for all this! I've done nothing wrong. I am asking (begging, more like now) for a diagnosis that the law says I'm entitled to.

 

Unfortunately, the lack of a diagnosis and support has lead to depression and other issues.

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I understand the frustrations you must feel over this and I know it is a hard slog to get anywhere with the system because of so many cost cuts, but you have to be systematically persistent with your demands.

 

My relative was constantly telling me that she couldn't get the contact details of a certain medical professional, but in 2 phone calls I got the information and left him a message, albeit they haven't returned the call. I will be chasing him again on Tuesday.

 

In the current economic climate with all the cuts the government have imposed it is hard to make oneself heard but if you do not follow through and shout louder, you wont achieve the result you were looking for.

 

Persevere with the MP and if the first one doesn't help, go to another one. It's your right to have this and YOU are the only one to fight hard enough to get it.

 

Have you tried contacting your loacl PCT to seek guidance? Do they know of a GP who may specialise in this condition. They do exist.

 

As for obtaining your information, I am aware you may not be shown all the information if something maybe deemed 'harmful'. but you should be allowed access to other information. The way you have described it is that you have been denied all of it. Is that the case? Which records are you trying to obtain? Your GP records or hospital records or other medical material? Are you aware that you can view the records without cost to you unless you want copies?

 

What about the 'Advocacy Service'? Is there one near you?

 

Do you have a family member or a friend who could go through what it is you want to achieve and draw up a plan of who to contact, how, when and their responses? Keep a file of your correspondence and put the dates of each communication in a diary so you can keep track. My relative finds this a very useful technique.

 

As a very last resort, have you thought about seeking advice on iwhether you could sue the NHS for neglect of services? Someone might just stand up and listen to you then.

 

I can certainly relate to the depression and other issues because of this. My relative has paid the ultimate price because of her condition.

 

Stay strong

Santander PPI X 2 **WON** claims on behalf of son (Oct 2010/ Mar 2011)

Citicard O/H (PPI) - **WON** Compound Interest Dec 2011

Citicard O/H (Charges) Bailiffs sent in August 2012

Barclaycard - **WON** Compound Interest Oct 2011

Monument - account information being sought for OH

Citicard - self - N1 submitted August 2012

Barclaycard - self - **WON** damages for non disclosure/information now rec'd. Aug 2012

Barclaycard - relation - Failed SAR sent 29/09/11

Halifax SAR sent 18/08/2011 for relation

LTSB - SAR sent 09/08/2011 for friend

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