fed up

[kerryt84]

Hi everyone, I haven't posted for a while. I've been waiting patiently for a diagnosis, but am getting quite fed up and I don't know whether I should just accept what is going on or make more of a fuss (well ask someone else to make a fuss for me, because I'm not good at fussing). Here is a basic run down on what has happened so far:

 

Approx. December 2009 – Went to GP asking for referral for diagnosis of AS. He said he would refer me to the mental health team.

After about a month of not hearing anything I rang mental health team and was told they had not received the referral. Rang doctor to re-send.

 

Approx. March 2010 – Appointment with two mental health workers. Told I would be referred to an AS specialist. If I needed support before then I should contact them. Could I send notes from the psychologist I had seen before I moved house. I sent the notes.

 

Approx. June 2010 - I ring mental health team to say I’ve just moved to a new house again (in the same county but a different area) and they say that I can still stay with their service if I don’t change my GP. I ask for more support as I'm finding it hard to cope. Apparently they have not received the notes I sent. I send them again with a letter saying I’m really not coping and would like support like they offered. I hear nothing.

 

Approx. September 2010 – I ring to find out when my referral appointment might be. They can’t find me on the system, they say they will call back but don’t. I ring again and am given the number of the person I’m being referred to and told to ring them. I also ask if I can see someone because I’m not coping, again no response about this. I ring the number and am told I am on their system but they have not received any referral forms. I ring the mental health team again and ask them to send the referral forms.

 

After a month I ring again and the referral forms have still not been received. I ring the mental health team and they assure me they did send the forms and will send them again. Apparently I may not be accepted for referral anyway though as the assessment criteria has now changed. I ask again for support as I am not coping and am told to wait until I find out about my referral.

 

 

Is it normal for letters and referrals to be lost and people to not get back to you when you ask for aditional support? I am at the stage now where I can't function properly in everyday life and am considering asking my doctor for anxiety medication to help me get through all this stress. I knew it would take a while to get a diagnosis, but it has gone a year since I first went to my GP and I still don't know what is happening

 

Thanks for your time, Kerry.

[Beth_]

You really should'nt have had to go through all that. I know the NHS isn't perfect but you'd atleast expect them to be able to sort out a simple referral.

 

I would go back to your doctor and get him to chase it up. They might take more notice if a doctor does it rather than a patient?

[smiley1590]

i can get why you finding it annoying frustrating and this must be making struggling to cope and manage everyday not knowing what really going on with any of services so disorganised but that really bad all stuff that happened i feel angry mad for you .... must be making you feel more under pressure strain ....

 

they don't have to cope and manage with A.S everyday all personal fights/battles we have go through they not fussed what happens at end of the day you just seen as number on list that sometimes seen as pain and want to keep passing the buck onto different services feel like parcel the parcel pillar to post but for having this all throughout your life and then made go through pathetic stupid situation again would make anyone feel way you do anxious etc it appauling awful that not just lost once on one service but lots of times just builds up in your world become overwhelming suffocating ....

 

hope you get official diagnosis you waiting for and deserve but keeping you waiting they will blame eachother too as don't want be liable except responbility but what don't realise is messing with someone's head ,emotions life that already at delicate fragile state at the moment ....

 

they all fob you off with 'different' stories to keep you waiting hanging and it like mental/emotional torture seems like pushing you over the edge as nothing you can do until you hear back from one of them but it bit wrong for so many services to make so many errors/mistakes to one client must be dragging you down making you think what point in find true answer but keep fighting hold on in there it be worth in the end even though may not feel or seem like it you must be strong to put up with all this!

 

take care

good luck

 

XKLX

[Mandapanda]

Hi Kerry

 

If you (or someone) phone up the Mental Health Team and ask them for the phone number for PALS. They will help chase up the referral/appointments etc. They will help you if you need to put in an official complaint. Or you may be able to google PALS for your area, although I think there are different PALS for different Trusts in any one area so it may be difficult to pinpoint the right one from the internet.

 

It's actually very difficult as ASDs come under the Mental Health umbrella, but I personally think that often they don't understand fully, and compared to people with Schizophrenia, Bipolar Disorder etc, ASDs can get sidelined as not being something they can really help with. You may have anxiety and depression as well but these may appear to be 'minor' problems compared to those with much more severe difficulties.

 

Also, I don't know if this is a national policy or just in our area - the GP is told to try a minimum of 2 antidepressants before referring to Mental Health Team. So we the general public may not want medication but other forms of therapy, but GPs are being told to do the medication thing first to see how effective that is before they can refer for other types of therapy, eg. CBT. They do expect GPs to deal with the lower levels of anxiety and depression themselves. Mental Health Teams provide a higher Tier level of support, but talking therapies can only be accessed through them (unless you can afford to go private). This is an anomaly in the system.

[kerryt84]

Hi guys, thanks for all your comments, I thought I'd give you an update. I emailed PALs but didn't get a reply. I found out that even though I was told I wouldn't be I was moved to a different area's referral system. I went and saw my GP and could barely talk I was so upset. I told her I can't cope anymore and all she could say was that it would probably be best to change to a different GP where I live so they can chase the referral. She didn't want to give me pills for my anxiety because she said I need to treat the cause, which is my communication difficulties. By a stroke of luck I had a call later that day from the person I'm being referred to saying I have an appointment at the end of January. I don't know if anyone helped it along but I'm very pleased I have the appointment. At last I have a chance of getting a diagnosis! Thanks for all your advice