In Limbo and Very Stressed - NHS System

[SimonJC]

I have previously posted about my "Symptoms" and my first steps in gaining a possible diagnosis for AS or other ASD.

 

http://www.asd-forum.org.uk/forum/Index.php?/topic/26196-diagnosis-at-41/page__view__getnewpost

 

So I've seen doctor and I've been assessed by a psychiatric nurse. She was really nice about the whole thing and promised to get me referred on for a diagnosis. In fact, she made it sound unbelievably easy. Would take a few weeks she said.

 

Unbelievable was right. A few weeks down the line, I hadn't heard a thing. On chasing up, I found out I'd been referred on to the wrong department.

 

So here I am, in this limbo phase and still waiting. I wish I could afford a private dx, but times are hard right now. I'd be interested in knowing what others' experiences with the NHS system are.

 

I'm feeling so stressed since I started this process. The problem is who I can talk to about it. Most of my family are miles away and I'm terrible at communicating with them at the best of times anyway. My wife is sympathetic to a point, but she still doesn't really understand what's going on (and I think she's just hoping it "Goes away" and that everything's ok - that I'm imagining it all). I have almost nothing in terms of friends, apart from a few people I talk to on Twitter (and I'm in danger of overusing those). It's really hard to find access to the right people to talk to.

 

I do feel optimistic about the future, but at the same time I feel so desperately alone. Need some advice.

 

SIMON

[darkshine]

I can't stop you feeling alone, but there are others who feel the same things, so in that way you aren't alone, i wish you luck.

Edited May 29, 2011 by darkshine

[Lyndalou]

I can't stop you feeling alone, but there are others who feel the same things, so in that way you aren't alone, i wish you luck.

Ditto. Good Luck

[jomica]

Simon - talk to the NHS Trust's PALS department(Patient Advice & Liaison Service)to see whether they can give you any help in getting your referral back on track quickly. If you look at the Trust's website, there should be details there about how to get in touch.

[Eastern Moon]

I'm sorry I have nothing helpful to share, but I hope you get the right help soon.

 

I can however tell you of my experience with PALS:

 

I was diagnosed with depression, but refused to take drugs. I opted for CBT instead, and was initially assessed by a nurse. I received a call from a CBT counsellor and given an appointment. A few days later I got another call from him to say he'd hurt his back and couldn't see me. No replacement was sent and my appointment was cancelled. I was back to square one.

 

After complaints to the mental health team,I was happy when I was appointed a counsellor - or so I thought. After my first 'real' appointment with the CBT counsellor, I felt worse after sharing my life story with her, and considered ending the therapy. I missed my next meeting, and when my counsellor phoned, I told her how I felt, but agreed to continue the therapy. However during that conversation, I found out she wasn't a CBT counsellor at all. She was a mental health advisor who used the same techniques as a CBT counsellor. I was upset and ashamed, and would definitely have not shared the things I did with her if I'd known she wasn't a qualified counsellor. Needless to say I didn't go back and my after telling my GP what happened I was referred again.

 

This time I received a call from a CBT counsellor who did an initial diagnosis over the phone. He agreed I'd benefit from CBT. He then said that until he can see me, would I like to attend some CBT workshops. He made me clear that this was just something I can do to help myself until he can give me an appointment. I was reluctant but felt pressured, and so I agreed. I was sent a date to attend the workshop, but forgot all about it as I was in a lot of pain that week and barely registering what's going on around me. Soon after I got a letter saying if I miss another meeting, or they do not hear from me within two weeks, it will be assumed that I don't want to attend, and I will be discharged back to my GP.

 

 

Of course I don't want to be discharged back to my GP. I usually put appointment reminders in my mobile fone, but had forgotten to do it for this appointment. So I rang the given number and found it constantly engaged. I rang again & again that day, and the next. There wasn't a queuing system, so you either got through or you didn't. I was tired and my stress level was going through the roof. Then I noticed PALS number and feeling hopeful I rang them. They were of no help whatsoever, and advised me to keep trying. I did. I'm sorry to say by day three, I couldn't do it any more. I felt PALS could've helped me with this. I will try again, after the bank holiday, but if I don't get through on the phone through no fault of my own, I will be discharged from the therapy.

 

 

I'm not even sure why I wrote all that : (

Edited May 30, 2011 by Eastern Moon

[Tally]

Eastern Moon, can you write a letter instead? You could even hand-deliver it if you need it to get there quickly.

[Eastern Moon]

Hello Tally,

 

It didn't occur to me to do that (probably brain fog). If I get it out by tomorrow, they should get it the next day. Thank you for giving my brain a nudge

Edited May 30, 2011 by Eastern Moon

[jomica]

Sorry you had a bad experience with PALS, Eastern Moon. There are lots of good PALS teams about, SimonJC, so please do give it a try.

[Eastern Moon]

Thanks Jomica. It's ok : )

 

SimonJC, I hope I didn't put you off from contacting PALS. Jomica is right, no two depts are the same. It just wasn't my day that day. Good luck to you.

Edited May 30, 2011 by Eastern Moon

[SimonJC]

Jomica

 

I think I might try with PALS. Hadn't heard about them before, but I've just checked on the PCT website and got a number so I'll give them a shot.

 

I must say I'm disappointed so far with the whole process so far. The trust in Northumberland operates an IAPT (Improving Access to Psychiatric Treatment) scheme, which was designed to speed up the assessment procedures for adults. Plus, the Psychiatric nurse made the whole thing sound so easy. Was she just saying that because she wanted to make me feel better, or did she truly believe that it really is that simple? Either way, I'm already feeling lost within the system.

 

Eastern Moon

 

I was afraid that I'd start hearing horror stories about others' experiences. I'm so sorry that you've been let down so far and I hope that things improve.

 

Does anyone know what sort of counselling exists either inside or outside of the NHS that would serve patients in the waiting phase? I must admit I'm feeling a little happier today on the account that I did manage to convey some of my feelings to my wife. She's not a professional however and I'm back to work in the morning so expect me to be on edge by at least tomorrow night

 

SIMON

[Eastern Moon]

Hi Simon,

 

Please do try PALS. My case is the same everywhere, so I'm used to it.

 

With regards to counselling/diagnosis outside the NHS, I looked at private services, and found that the fees can run into hundreds of pounds. Unless you're super rich, you should continue trying to get help on the NHS. It might be a bit of struggle, but it's not impossible.

 

Also, have you thought about attending a support group? I was searching on the internet for one in my area and found a few. I've yet to contact them, but that's something you might want while you attempt to get the help you need? I'm hoping meeting people who have aspergers, will help me assess myself. A couple of people I know said I don't have aspergers. I'm not sure how they can tell. I feel people expect aspies to sit and stare into space or something.

[SimonJC]

Yeah I've looked into support groups before and unfortunately, I'm not living in one of the better areas of the country. To date I've been unable to find any groups that hold meetings in Northumberland or North Tynside. I could travel a bit further afield but I'm constrained by my work hours too.

 

I'll keep looking.

[Eastern Moon]

I'm sorry to hear that. I think you should contact PALS to chase up the appointment that was messed up. Hope you get help soon.