Bad experiences with the NHS

[starwars_chris]

Hi all - I'm new to this forum and to mental health issues in general but i just thought I'd share my experiences and see what people thought.

 

9-10 months i finally went to the GP because my depression (and related problems) had finally become too much for anyone to deal with. Background wise I'm 31 and have never felt like I fit in. In all honesty my life has been hell and it eventually got to be too much and I snapped (as the fist shaped holes in my flats door will testify too). Anyway, the doctor put me on one kind of anti depressant drug and referred me to the adult psychology department.

 

I waited months before getting an appointment and then spent a few months being bounced from person to person because they couldnt figure out what to do with me (as it turned out the people I was referred to dealt with people with short time depression, ie you're sad cos you're dog died).

 

At this point my mates friend suggested Aspergers as an answer - her son was going through assessment for it and she recognised many of the "symptoms" I was displaying as being similar. This was the first time I'd ever even encountered the word and it came as something of a revelation in that it finally made things make sense. I was eventually assessed by a "long-term" psychologist and mentioned this to him - I was supposedly refferred for "social phobia, social anxiety and possible developmental problems on the autistic spectrum, most likely Aspergers". For the first time in my life it felt like someone was listening to me and I felt, not good but at least... satisfied that things were progressing. I took a written test and then waited...

 

After 2 months I was back to nearly snapping. I was put on different drugs and told once again to wait, hardly a satisfying response...

 

Eventually I was given an appointment with someone on a supposedly regular basis. But now I feel like my input is being ignored. Every time I mention Aspergers he dodges the subject. I still dont know the result of my test and it feels like every time i even mention the word he wants to talk about something else. For the first time I finally feel like I've found an explanation for "me" and yet my doctor doesnt want to have anything to do with it.

 

Basically I'm wondering if anyone elese has had a similar experience and what should I do about it? Part of me wants to start screaming and push the subject and the other part of me doesnt want to cause a fuss and to just leave things as they are. Specifically I have been off work now for 3 months (just because of my current inability to cope) and no one will give me any advice as to whether to go back or not, but that seems to be because no one will admit one way or another whether my problems are because of Aspergers or not.

 

Anyway, I've rambled enough and I'll just say any advice would be appreciated...

[LancsLad]

Starwars-Chris, you will not be the only one in this situation and i suspect it is pretty typical.

 

As someone with a label for Asperger's getting the label makes very little difference in my life. How I see myself well thats a different matter. My point is you can see this how you want to. If you feel you have Asperger's then self diagnose yourself, it doesn't affect me but it might you, if you think the cap fits wear it.

 

Where the problems do come in is when people want to believe there is a cure for this thing, well there isn't, its a life long condition, it's not a disease it's a condition and like all conditions we have to learn to live with it and recognise if for what it is. Having a label and failing to recognise this is in my eyes a recepie for disaster.

 

I often think that in life there are many people with 'needs' but then there are the 'needy'. When it comes to mental health services in the NHS if you go in as a 'needy' person then you are going to get short changed in almost every scenario. If you go in and say I have these needs and if you can do anything to help me deal with some of those needs you might have a chance of finding some value in the system.

 

My experience is to learn to accept yourself for who and what you are, we do not need labels to do this, and then get on with living your life. If life is too difficult or not challenging enough then do something about it, make the changes. Waiting for someone else to do these things for you can lead to a very long wait..........

 

Just a few thoughts.

[mrsmoulds]

From experience I wouldn't keep badgering them about a diagnoses and go with the flow of things, its takes time for a diagnoses with them closely observing your mannerisms and behaviour they'll only make a diagnoses when they have assessed you fully, this can sometimes take months.

[Sally44]

I think it is logical for you to ask at your next sessions what is being done regarding your queries about Aspergers. It isn't unreasonable to know what is being done [assessments or observations], what the finding of the test you did was. Are they intending to follow your queries about Aspergers etc.

 

Sometimes professionals can be reluctant to diagnose, especially adults, because they feel it could have a negative effect on the persons prospects or they feel that giving a label does not really achieve anything. But as an individual with difficulties and just wanting to know what the cause of that is, is very valid.

 

For my son I wanted him to receive a diagnosis so that he could receive the support, educational setting and therapy that he needed. As an adult with Aspergers [or even as a child], there is often very little support out there.

 

For myself, as an adult that was finally diagnosed with a health condition [not on the spectrum], and having been passed from pillar to post for years with no answers and left feeling like a fraud - I can honestly say that my own diagnosis of Fibromyalgia was a huge relief and helped me move forward and learn about my condition.

 

Afterall, your anxiety and depression may well be linked to the Aspergers. But you may also find, from the depression side, that professionals may become more reluctant to offer any kind of 'therapy' for the depression if they do diagnose Aspergers, because many argue that cognitive behavioural therapy does not work, or does not work as well, for those on the spectrum. There are also plenty of other professionals that argue it can be used successfully.

 

So it isn't a straight forward answer to your question. But I think you are justified in asking questions of those you are seeing, and if you feel they are dodging the question, tell them that. Say "it is very important for me to have an understanding of whatever maybe an underlying cause of my depression and anxiety and I feel that Aspergers describes how I feel and how I function. But I feel you are dodging this as a possible diagnosis and I want you to explain to me why."

 

Their response maybe that they are considering that, but that it takes time to make a diagnosis. And if they do say that at least you will be reassured that they are listening to you.

Edited July 27, 2012 by Sally44

[trekster]

I would write to PALS http://www.pals.nhs.uk/ about the lack of diagnosis citing the autism act if necessary.

 

http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-information-for-adults/diagnosis-making-a-complaint.aspx

 

...is another option.