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Help with Hospital Appts (not for Aspergers)

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neilwalker1970

Well-Known Member
Hello,

I'm a 46 year old man in the UK and was diagnosed with Aspergers 2 years ago.

Unrelated to that I have an issue with long term pain and stiffness in my feet, which I am trying to get some help for. Ordinary physiotherapy and orthotics provided by the hospital have n't helped at all. I am trying to get my local hospital to do a gait analysis and an MRI to discover why I am getting this pain, but the consultants have so far either said there's nothing they can do, or sent me for irrelevant tests.

I am wondering whether I should mention to the hospital I have Aspergers. There is the Patient Advisory Liaison Service (PALS) which is supposed to help people with queries about their treatment and intercede on patient's behalf (although I don't think its a complaints service).

Could the fact I have Aspergers mean I'm just not communicating my problem well enough? And could mentioning I have Aspergers get me some more help?

Thanks
 
neilwalker1970 said:
Could the fact I have Aspergers mean I'm just not communicating my problem well enough? And could mentioning I have Aspergers get me some more help?
Click to expand...

Unfortunately, Aspergers is one of the biggest barriers to communication. And what make it even more frustrating, is the fact that you may feel like you're getting your point across at first, then later feel like the person, you just talk to, didn't hear a word you said.

It may or may not help to tell them that you have AS. It all depends on whether or not that they understand the problems, AS causes.
 
PALS do handle complaints. I think you should mention your Asperger's, as your foot problems could be linked to your condition. Perhaps cite studies linking Asperger's to an altered gait, and hypermobility (hypermobility can cause stiffness and pain in joints-strange as it may seem, and it is a potential cause that a savvy specialist would look at in a case such as yours). Also explain that your Asperger's causes you communication difficulties and you have difficulties getting your needs across and being assertive; and you feel as though this has hindered you in getting a further referral for your problems.
 
Hi there, I am also the same age as you and from the UK, but live in France ( not that it is relivent to your post lol).

I think you should take advantage of PALS personally and of course, mention you have aspergers.

I have to physc myself up to go to my dr and I am putting it off. I keep saying that it is better to go when it is not an emergency, than when it is, because of major anxiety going on. But I still procrastinate. I simply have a phobia with the waiting area. It is dead silent and small and so, when it gets full, I can feel myself hypoventilating and the dr is just so blaze about it all. She opens the door, chewing gum and very casually says: next one ( in French of course) and I cannot deal with that at all. But I have to go soon, which is like a nigging tapping in my head. My husband has said he will go with me, but he barely has time to sit down and feel embarrassed in asking him.

Anyway, I would seek the help if it is there.

Not sure if this would be any help to you, but just found it: http://www.aspergers.org.uk/help-and-support/
 
FreeDiver said:
Unfortunately, Aspergers is one of the biggest barriers to communication. And what make it even more frustrating, is the fact that you may feel like you're getting your point across at first, then later feel like the person, you just talk to, didn't hear a word you said.

It may or may not help to tell them that you have AS. It all depends on whether or not that they understand the problems, AS causes.
Click to expand...
I've been in this situation many times. I think I communicated my needs and issues clearly, only to believe that I wasn't listened to. In actuality, I did a rather poor job of communicating my needs. This will be a lifelong struggle for me and many, I suspect.
 
To update the situation, I contacted PALS and they gave the details of the Learnig Disability Liasion Service, who I phoned. Unfortunately, they said they don't deal with people with autism. They are supposed to be thinking about this and phoning me back. Seems odd that no-one seems to be help with people on the autistic spectrum.
 
neilwalker1970 said:
To update the situation, I contacted PALS and they gave the details of the Learnig Disability Liasion Service, who I phoned. Unfortunately, they said they don't deal with people with autism. They are supposed to be thinking about this and phoning me back. Seems odd that no-one seems to be help with people on the autistic spectrum.
Click to expand...
Oh no I'm sorry, that sounds utterly ridiculous!
 
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