Waiting List for talking therapies on the NHS

Hi Jenny, Just wanted to say a quick thank you for the YouTube links, very informative and useful. 

Thanks Jenny - I hadn’t thought about a local carers association (I don’t even know if we have one near us). I’ll look into that. 
I agree about the current government - they’re never going to improve the sort of services that we need. This Govt makes the Thatcher years look positively benign! 

It's a very sorry situation unfortunately.  And I think there'll be many who just give up and suffer in silence.  There are so many additional barriers because services have limited access and usually aren't autism-friendly either, so basically if people have to phone repeatedly or argue their case, they're just not going to feel up to that.  In fact all the chasing around is likely to make them feel worse. 

There may be advocacy services in your area, linked to mental health or autism organisations.  And I also found my local carers' association to be useful, with a shorter wait for counselling than the NHS.  It didn't address everything, of course, but I felt "held" and supported while I got my head together to make other decisions or even just to give me the strength to keep going.    

Of course, all of this is another factor in me accessing Sapphire to get help, although I appreciate that this isn't the answer for everyone and the costs can mount, depending on what's needed.  Their oils help me much more than SSRIs ever did, although that wasn't too hard to achieve given the SSRIs seemed to mess with my brain and actually impair me at times.  Our sons didn't have a very good experience with them either  - you're definitely not alone with this.   

I would still recommend putting that complaint in, if you feel up to it, but, like many, I do find forums like this more helpful than services.  They're more specific to our needs and more understanding of any limitations too.  I wish services could be more geared up but I'm not placing any hope in our current government.      

Reading of all your knowledge and experience of this Jenny I realise how little I know about it. I’m far too exhausted to do the research I probably should be doing in order to pick through all the different aspects of it. I think this is the problem - we go to the NHS when we’re already very vulnerable - expecting them just to give us what we need (if only!) but we soon lose all our illusions on that front! And then it’s: I’m not going to get what I need here - so what can I do? But we’re not always in a strong enough state of mind to grapple with that question. Even reading a fairly standard and accessible book is quite a challenge for me when my anxiety is at its worst. So working all this stuff out can feel almost insurmountable. 
most of all I’m just so TIRED, and I want someone - someone who actually knows what they’re doing! -  to just give me something that will help. Something that isn’t an SSRI anyway - because they made me feel so much worse. 

I feel exactly the same about this place 

If anyone is interested, there are a few Aucademy talks on therapy.  Here's one:-

https://www.youtube.com/watch?v=J72zvz9B-00

Plus one I personally found useful because it moves away from CBT and into person-centred therapy, which I would definitely favour, along with trauma-informed and autistic-friendly (i.e. individually adapted) therapy.

https://www.youtube.com/watch?v=ShhpNjbsGW4&t=1s

I may well be biased but I've had training in both CBT and person-centred counselling and I naturally lean more towards person-centred.  Reading the work of Carl Rogers was a major revelation to me, as well as a considerable relief, leading me to wonder where this approach had been all my life.   Basically, and for those who aren't already familiar, his approach takes its lead from the person.  It is non directive (whereas CBT is very directive, if not prescriptive), non judgemental and accepting, and promotes genuineness within the therapeutic relationship.  

One of my favourite Carl quotes:-

"..it is the client who knows what hurts, what directions to go, what problems are crucial, what experiences have been deeply buried. It began to occur to me that unless I had a need to demonstrate my own cleverness and learning, I would do better to rely upon the client for the direction of movement in the process.”   

There are too many "therapists" out there adopting the role of expert, imposing their own views or strategies and making it a minefield for many. 

I'm not saying that CBT can't be helpful in some circumstances and with some people.  Some prefer the direction, the structure and the sense of consulting an expert.  It can be very appealing to people with a very logical bent of mind.  But the usual brief NHS CBT seems to me to be barely any better than a rather basic introductory text.  And their online courses reflect this.  There used to be one called "Beat the Blues" and, although I don't know whether this is still around, it simply took you through the basics but no more and with no tailoring to individual problems.  I can't see that being helpful to many and certainly I had a couple of clients who, even after their NHS appointments came through, came back to me complaining of the "silly" homework tasks and the assessment forms they had to complete each and every session, with little time for actual listening and reflecting.   

A good therapist will take more time, take care to build a trusting, therapeutic relationship and, if using CBT, use a thorough formulation of the person's issues - their history, what triggers them, how they fit into their beliefs and assumptions and how well any "hot thoughts" are working for them.  I.e. To me they are using CBT built upon a person-centred foundation, such that it becomes harder to tell it's even CBT.  

Sadly, it seems to be a "let the buyer beware" situation, which unfortunately even applies to NHS work because, even if you've not spent any money, you've been subjected to a long wait, raised expectations and then dashed hopes and disappointment.  So you've basically still been buying in to their model of therapy and, if it doesn't suit you, wasted valuable time which could have been used for something which actually helps. 

    

I know what you mean. This community is so valuable to me too. Communicating with people who really understand what it’s like has been massively helpful and reassuring for me too. I’m glad you’ve found that too :) 

I think you’re right - we need people who understand autism - otherwise it’s much less likely to be helpful. And you’re right - in principle it’s important to speak up if things aren’t right. It’s difficult though if you’re already feeling so vulnerable and exhausted. But yes - if we don’t nothing will change. 

I am finding the pages of this forum "my type of talking therapy!"

No pressure to join in, unless you want to.

Content that is relevant and interesting.

Sense of belonging - Knowing I'm not alone.

Useful, honest and direct advice and opinion about what works for others.

It might ce called NAS, but it's CBT+ for me.

Thanks to everyone for helping me.

I too found h.m. not helpful in the slightest. They made me worse...until I pushed for further treatment saying what I'd done previously wasn't helping. I also complained to the manager because of how one of the therapists talked to me. I figured if more people did the same perhaps they might listen. These places are supposed to help but 9/10  make it worse. Then the organisation for autistic individuals in my area is even worse so I've just avoided.

The most helpful thing really has been talking to a private counsellor who was autistic themselves. If you can afford it and can find one it's really worth it. This has been far more helpful in understanding autism from a non-deficit point of view, understanding how my brain works and acceptance. This was better than trying to mould my brain everytime I got anxiety. I understood the CBT and went through the motions but I don't think it was very effective just because I'm wired differently. They are putting autistic people through treatment which isn't effective and this is a waste of resources and time for everyone involved. Ive heard ACT, CAT & DBT are more suitable.

I'm saying if things aren't right for you then speak up.

I think you certainly do have grounds for a complaint but in all honesty I wonder if it is worth it. I referred to healthy minds in our area as we dont have talking therapies, its like the equivalent here and it was completely useless. They put me on a CBT course, dont know if youve ever tried that?

It was very much one size fits all therapy and if that thing didnt work for you they wernt interested . It was a case of do this or nothing and when I tried to tell them the things they were suggesting wouldnt work for an autistic person they were just like well this is CBT, do it anyway. Some of the stuff they suggested was unbelievably unhelpful and triggering.

Maybe Talking Therapies would be different and better but if they suggest CBT run for the hills

Thanks Jenny - that’s really helpful. I just feel so exhausted and the thought of making a complaint feels quite overwhelming. It reminds me of all the times I had to fight to get help for my son - it was such a battle and took its toll on my mental health, That was so many times throughout his education - without much success most of the time. So I’m a bit daunted to start another battle. I had to do a bit of this to get help for my Mother too (who has dementia). 
It is encouraging though that you got a least somewhere when you challenged the poor service you were offered. I might see if I can steel myself to at least try. I take your point that if enough people complain there might be a cumulative effect. It really shouldn’t be this way. 

I always think it's worth complaining as, even if you don't get any immediate result, you may well be adding your voice to others' complaints and en masse they might just take them into consideration.  It also means it's on the record in case you want to refer back to it at any point. 

In the past I've complained to the GP, the practice manager, PALS, the PCT and later the CCG.  I unfortunately never managed to get myself further up any of their waiting lists and there was still a significant wait.   What I did get, though, was a better choice of therapy - in my case longer term and more in depth rather than IAPT/CBT brief therapy - plus I also managed to get 2 additional rounds of counselling when I emphasised my issues to the GP and she simply put in another 2 referrals to the same service and practitioner.  I also found that my GP became more sympathetic to my cause.  Maybe my case began to stand out more? 

This might all differ between areas though.  I'm in County Durham.