Basically I can’t get any help can I?

[Starrmix]

I’m an autistic person who’s struggling with various types of trauma including sexual abuse, bullying, low self esteem, anxiety, depression, etc. I’ve been on the NHS waiting list for counselling for nearly a year. Finally they offered me a weekly appointment.

But the first week they cancelled with 48 hours notice because the therapist was off work. Fair enough, I was disappointed but it was fine. The second week they called and cancelled with ten minutes notice, after I had psyched myself up to share my trauma and I was already on the bus (which isn’t easy for me as an autistic person). I was understandably very upset.

This week (week 3) they haven’t even bothered to tell me the therapist is still absent. They’ve let me organise and pay for a babysitter for my son who is off school sick, psych myself up, get washed (which is an effort because of my depression), get on the bus (not easy for me because of my autism) and sit waiting in the medical centre for 30 minutes. Then someone finally asked who I was supposed to be seeing and told me she’s still absent.

That’s how little I am worth to other people - they couldn’t even be bothered to tell me my appointment is cancelled. They don’t give a shit if I waste my money and hours of my day turning up to an appointment that isn’t happening. And basically I can’t get any help, no matter how long I wait, because they just keep shitting on me over and over.

Do these people not realise that trauma therapy isn’t just like a dentist appointment that they can cancel? I feel like I’m being traumatised over and over by getting myself psyched up to talk about my trauma then being ditched at the last minute. Not to mention the huge inconvenience and the feeling that I simply don’t matter to anyone.

Could not read and not respond, sorry you are feeling this way. If these appointments are at a drs can you ask to speak to practice manager. Someone needs to be accountable for this lack of care. Can you do something nice for you? Yes it’s rubbish how you have been treated.

Loads of sympathy with you. I’m sorry, I can’t say much more but I know the feeling. I’ve been passed from pillar to post for over a decade (similar issues to you) and it feels shitty. Please don’t give up on yourself. The NHS doesn’t function very well for non-acute problems - it doesn’t function hugely well for acute problems atm but it’s not that they don’t care or you aren’t worth it.

That’s so awful, I’m really really sorry 💐💐💐

That’s a shit show OP! Says it all really about the state of the NHS which is a nightmare for someone like you who needs the help.

My advice is make sure you are being heard, don’t suffer silently. Ask them to explain why you weren’t informed and why there have been 3 cancellations in a row. Next week I would call up if you can before you come to make sure everything’s running.

You must be reeling, so annoying that you’ve gone all that way.

X

I said they should know how long of an absence the therapist has applied for and when she’s due back at work. They should be able to say for example she’s been granted a month off and is due back on the 27th. In other words they shouldn’t need to call me every week on the day of my appointment and cancel - they should know in advance what’s going on.

But apparently she’s hired through an agency not employed directly by the NHS. So they aren’t privy to information about her absence, they simply get a call on the morning saying she won’t be working today. This is three weeks in a row. Like I said, I appreciate that she’s absent - my complaint is that they aren’t informing me in advance and are repeatedly wasting my time and stressing me out for nothing.

They asked me if I want to wait for this therapist to return or go back on the waiting list, because they have no idea when she’ll be back. I got hysterically upset because I’ve already been on the waiting list for a year and I was so happy to think I was finally going to get some support. But now I’m being put back on the waiting list. They can’t even promise me a face to face session if I go back on the waiting list, I will probably end up with therapy over the phone. Then she’ll probably return and someone else will get my face to face session that I’ve waited a year for.

Oh no - sorry OP that’s a horrible decision to make. I think you’ve done the best thing.

I take it you’ll now be top of the list? Really hope you get someone more reliable soon.

In my experience therapists always try and book leave in advance with lots of notice for patients. So it feels wrong that they just find out on the day even if it is an agency. Who knows what could be going on though behind the scenes. No excuse not to keep you informed though.

So sorry, that's proper shit. Can you pluck up the courage to complain to PALS? No one should be messed around like that.

Yes I will be top of the list but could still wait months. Patients get three months of therapy, if they’re not fixed they get another three months, etc. So it would be a case of waiting for a current patient at my local centre to finish their treatment then I would get their slot.

I’ve already waited a year because I felt I really needed support face to face from a real person. If you’re willing to talk to the therapist over the phone they can get you an appointment sooner, because you can be allocated to any therapist in any location, not just the limited number of therapists at your local centre. But I don’t want to discuss sexual abuse with a faceless therapist over the phone, and also being autistic I find verbal communication difficult and it’s easier for me if I can see the face and body language as well. So I opted to wait longer for a face to face session with a female therapist. Who has now ditched me at the last minute three weeks in a row. In fact today I wasn’t even ditched, I was stood up.

What a nightmare, I'd be so disappointed with this also. However it's 100% down to the dysfunctional system and not you personally. I do hope they manage to get their act together

Your story has touched me and made me angry. It does not reflect on you or your worth. Somehow incompetent people have got jobs that make a difference to peoples lives.

Is it possible that working with MIND or another organisation would be more helpful that NHS time limited therapy. Whatever you decide I admire you and wish you well.