Xyla Digital Therapies

Indeed. In all honesty, I'm not optimistic which ever path I choose. I had a lovely therapist last time and she really did try to make the therapy work for me but she didn't have the knowledge needed with regards to neurodiversity. The way the system works I had little choice but to finish that bout of therapy and be referred up. Unfortunately, the way the system works (at least in my area) they don't just refer up, they insist that they discharge you and then you get referred and go back to the beginning of a waiting list. It's a pretty sucky system.

Expecto_Patronum said:

I just wouldn't speak in a group so it'd be entirely pointless.

I believe it started with 8 people, and then some dropped out.  It ended with 5 by which time we were getting on quite well, remarkably.  However the point of the group (to learn coping skills) wasn't achieved at all.  

I just wouldn't speak in a group so it'd be entirely pointless. Luckily the assessor agreed that individual was better suited. I think they like to push group because they can fit more people in that way so I was wary I'd be pressured.

I used to deplore group therapy to the point I flat refused it.  However I eventually had some, and I didn't find it too bad.  The only problems were that you felt you couldn't share anything in depth due to the amount of persons present, and that the group developed a bond that actually overrode those taking the sessions.  It was an odd experience all told. 

No the last assessment was after the step 4 referral. I waited a year after being referred. Had the assessment in which they decided whether I better suited group or individual therapy. We decided on individual. It was a bizarre assessment I must say - he really just wanted to talk about my autism. It wasn't like any of the other assessments I've had. 

I spoke to someone today and she did refer to it as step 4 treatment. She said that someone will ring me back with more details and assured me that I will not be discharged before this as it is ongoing.

The website definitely doesn't seem to be the best guide but it is off putting that they don't explain what they offer properly. If it wasn't for the flexibility of appointments I think I'd just decline it. But I'll have a different dilemma if I stay on NHS list.

Expecto_Patronum said:

It still makes me somewhat wary as if you other a range of treatments, why would you not advertise this on your website.

Because some of these private providers offer different services when under contract to the NHS than they do to their own clientele.  They also vary their services from area to area. 

In my opinion it isn't right.  We should all have a level playing field, but that is the system these days, and until someone deals with the injustice in it, us mere mortals have to suffer it. 

Thank you. Yes I have been told it can be adapted but I'd rather avoid it if possible. I don't really trust most people that say they have neurodivergent knowledge.

I managed to get through to mental health and they have said that they will get someone that knows more to ring me back and have assured me they will not discharge me before then.

The woman I spoke to thought that they must offer more than CBT because step 4 itself doesn't offer CBT, that is step 3 and this is an alternative to step 4. But she didn't want to promise something without knowing the full details.

It still makes me somewhat wary as if you other a range of treatments, why would you not advertise this on your website. Why only describe CBT. Seems counterproductive if you want to attract patients. They are a private company so won't just rely on the patients the NHS is sending them.

Expecto_Patronum said:

the only treatments actually talked about on the website is CBT. I've already had this, it didn't work

From what I have read CBT needs to be significantly adapted to work for autists but it does seem quite effective once "tuned" correctly for your autistic traits.

There is an article covering some of this here: https://neurolaunch.com/cognitive-behavioral-therapy-for-autism/

It may be worth asking the supplier how they adapt their CBT for autists to see if they even understand the challenges here, and if they just waffle on rather than being able to explain how it is adapted then you can be fairly sure they haven't got a version that will work for you.

Yes, but who did the last assessment (you see, this is the issue I keep getting).  They seem to want to assess on completion of something and then again before you start something else - almost as if one reviews your last course of treatment, and another then looks at where you go next.  They also have these multi-disciplinary meetings in-between that they don't tell you about at which your on-going care is discussed, and the results of assessments are passed about, and given to others for second opinions & the like.

I'd be interested to hear what they say, but they are often a law unto themselves.  I'd be inclined to make contact before the 7 days anyway, even if you can't clarify - you could always back out if you were unhappy down the line, I suppose.  I get the impression the website might not be the best guide (especially if you weren't referred to it explicitly) 

Well this is the part I'm a little confused about because I've already had the assesment part and it was referred for more treatment. But it looks like if I go for this option I'd be assessed again. I just need to know that they offer more than CBT as if it's CBT its a fat no from me. The bit that makes me want it to be a viable option is the flexibility in appointment times.

I may be totally wrong here (and you likely know better than I do) but I was under the impression that Step 4 is an assessment process rather than an treatment or assessment.   In other words, a session (or more) with someone to evaluate what you need. 

I don't think this means these people would necessarily be providing your ongoing treatment, just figuring out what treatment is appropriate. If you can get some clarification based on that theory, it might be helpful & put your mind at ease. 

I've emailed the NHS psychology department and the treatment provider offered to try and get more information. Trying to be cautious but I have 7 days to respond or they'll discharge me - such a helpful way to treat people with anxiety. I've tried to ring as well but so hard to get through to mental health on NHS. I work a shorter day tomorrow so can commit some more time to trying to ring on repeat til they answer. So far all I've got though to is a very obnoxious beeping that hurt my ears.

I'd be wary of accepting something I wasn't fully aware about from the outset.

Recently I undertook a course for a mental health condition provided by NHS Secondary Care.  I should have been given a follow-up (in-house) but due to the waiting times, this ended up being provided by a private psychiatrist on behalf of the NHS.  This led to complications, because I wasn't aware of the change, and because the psychiatrist didn't appear fully appraised of the background.

Anyway, I tried to find out a bit about this person ahead of the telephone follow-up, and it provided some reassurance.  What I hadn't realised was that by accepting the appointment by a private provider, I was - in effect - transferring my care to them, and putting my mental health in the hands of someone I didn't know.  I wished I hadn't done it. 

This psychiatrist reviewed the course I referred to and pronounced there was nothing else on offer subsequently.  She reeled off a list of voluntary options I might consider and had I not protested (and ultimately succeeded after making myself ill in the process) she'd have been happy to close the case - which I believe may well have been her remit anyway (reducing the numbers waiting for treatment).  Now I'm back awaiting NHS treatment again, on said waiting list.

I'd strongly suggest you speak to your NHS provider before accepting anything in the private sector - if only to find out what it entails, and what it means for your on-going care.  What would happen if you were unhappy, would you have recourse in the process?  I realise it is tempting, especially after such a long wait, but I'd say all the more reason to be exceptionally careful.