Mental health services are shambolic

You've reminded me, my local service called me for some feedback too.  I gave an equally grim account.

I have just had cause to complain about the local service putting false information on my records.  Having spoken to the operations manager that will be investigating my complaint, she told me "We do things differently now, it's very different to how it was in 2012".  I doubt it.  My local Trust has had an appalling report on it's failings only last year.  Staff suffer bullying and physical violence from managers and wouldn't recommend it as a place for their own friends or family to get help!

The whole thing is disgusting.

Having all those clinics in one place sounds horrific, like a zoo.  I remember once having to do to see someone in mental health and I was terrified, they put me in a waiting room with several clearly severely mentally ill/potentially unstable people.  I was just about to get up and leave when they called me as it was too distressing and I felt unsafe.  They clearly want to shove everyone like cattle and not take into account the different needs of people using the service.

Yes, and at my clinic mental health services now share the same space as physical health, meaning that the clinic is noisier. At least when the clinic was mental health only, I ran little risk of bumping into people I might know, and even if I did, they would be sharing similar issues. Everyone knows how stigmatizing mental health conditions can  be, and yet the managers think nothing of putting all the different services (sexual health, children's clinic, elderly health checks) together!. It is also now a nightmare getting through to anyone on the phone; last time I tried it took me a whole half an hour, and I almost gave up. When mental health had its own clinic, I could get through to someone very quickly.

Things seem to be getting worse, not better!

I have many anxiety issues: OCD (contamination and checking, safety orientated), phobias, health anxiety (hypochondria is the medical name), noise (autism-sensory), people.....

So I am a complex case, and maybe that is why I am being short-changed.

Recently I was involved in mental health quality check work, to find out what needs to change  in mental health provision for adults on the spectrum. The findings were grim, revealing widespread autism ignorance amongst mental health staff and lack of autism training, all things that the Autism Act is supposed to rectify.

I have seen three different CBT therapists in the last 6 years. The first therapist stopped seeing me when I was on the waiting list to be assessed for Asperger's. Once I was diagnosed she started seeing me again, and was prepared to work with me for a longer period of time, but then she moved to IAPT in a GP surgery.

I was left at square one until a year later when I saw another therapist, but she only worked with me for 6 weeks and knew next to nothing abput autism. Neither did the first one, but at least she was nice and understanding - she was willing to learn. The second therapist told me I was unlikely to receive any more therapy on the NHS because I am not really  'ill', and can get out of bed in the morning!. This seemed to me as though she was clueless as to how severe my anxiety actually is. Yes, I can get out of bed in the morning, but the chronic anxiety and tension causes extreme discomfort and stops me from living a productive life.

The third therapist told me she had worked with someone on the spectrum before, but did not help me overcome my anxiety, and I only saw her for 6 weeks.

My support worker has done far more to help me than any of these so called experts, but I still experience mental health problems. I am now waiting for another referral from my CPN for more therapy, clinging to the perhaps foolish belief that next time will be different.

Hi

£70 is expensive?  I really don’t know.  I was paying £40 for a session at Relate about 5 years ago.  I have looked on NHS direct and they say CBT can cost £40-£100 (more in the London area, especially Harley Street).

Also £70 a month for one session rather than a session every week costing £40-£100 is more cost effective.  You could argue that CBT is more cost effective because its only over a finite number of sessions but I feel CBT may treat the symptoms rather than getting to the cause.

And I have to say our therapy is not exactly conventional, she tells me about her experiences and her life that are relatable to problems in mine. 

I think she is exceptional.  If you met me 4 years ago before therapy, you would have met this desperate aspergic guy who feels worthless and inadequate but now I exude confidence because I am attractive, lovely, tactile, thoughtful and amazing person that anyone would be lucky to have in their life.  I can walk into a bar and know I look fantastic and feel like I belong here and I am worthy of peoples love and attention.  I am slightly embarrassed by the quiet introverted guy in his early 20s who use to dress in black, didn’t think he counted, had selective mutism and could barely look anyone in the eye.

But its not all down to just talking therapy (getting some distance from my family, yoga, neditation, Effexor and massage as well good friends helped too)

DaisyGirl you are right.  I have always said this myself, which is why talking therapies don't work for people on the spectrum.  We need practical solutions to the problems that are dragging us down, not sitting talking endlessly in a loop.  You still come out with the same problem.

I have just weaned myself off SSRIs which I recognise now, I should never have been given.  I didn't ask for them, a mental health worker contacted my GP and they persuaded me.  If I had not been facing the difficult situations I was, my anxiety levels would have been normal.  It was through addressable situations with services (about myself and my children) that they caused, I was given all the anxiety.  The SSRI's served a short-term purpose (albeit with unpleasant side-effects) but they just left me on them without review for about 18 months, and I had to take the decision myself or else no doubt I'd have ended up on them for life!

And furthermore, their judgement of the nature of the anxiety has been entirely erroneous as zem indicates.

They haven't got a clue, and they judge us by neurotypical standards which will never work.

I am just wondering if mental health services need a complete re-ordering in their general appraoch.

It seems that they assume one of two problems for people with mental health problems. One: there is a chemical imbalance. Two: there is a disordered way of thinking.

In actual fact neither of these things may be the case, and in fact what people need (whether they have autism or not, but very much more if they do have autism) is a change in their life circumstances. There is an assumption that giving medication or CBT will allow a person to change their circumstances themselves, but often this is not at all possible. Without ouside help with life circumstances there will never be a recovery, yet this type of help is specifically prohibited by the mental health services.

There are some professionals out there who see this problem (for example those that speak of reactive depression or anxiety as a perfectly normal reaction to unbearable life circumstances which the individual cannot change), and talk about it, but there is nothing they can really do. It seems it is often the case that professionals prefer "easy" cases where a boost in mood created by short term SSRIs solves the problem, but in so many cases, and especially with autism this just doesn't work.

Worse still is the use of person centred counselling/therapies where the therapist just repeats back to the "client" what they have just said. 

Maybe some people have good experince with these therapies, but personally I don't think they are any use for adults with autism.

Hope said:

Just a rant!

It seems that these days the only groups who might benefit from mental health services  are those who are severely ill (been sectioned and are in hospital), and those with stress related anxiety and depression, who have access to Improving Access to Psychological Therapy (IAPT): 6 weeks of CBT in a GP surgery or brief telephone contact. But if you have a chronic anxiety condition as a complication of having a developmental condition like autism, there is hardly any mental health provision!. I know this from first hand experience; you might get 6 weeks  of CBT, which barely scratches the surface of your problems, and are then expected to get on with it yourself, until the problems you face mean you need more CBT; and so it goes on  in swings and roundabouts with no real progress!.

Isn't it about time this diabolical state of affairs changes? And what precisely is the Autism Strategy doing to ensure that adults on the spectrum with chronic anxiety get the intensive (more thaan 6 weeks in many cases) therapy they need?

Can I add a quick rant on the same topic? :)

I think that you're being unduly optimistic in suggesting that IAPT are a good thing.  I waited about six months to start CBT and then it was with a rubbish therapist.  I never actually worked out what the specialist knowledge that she was supposed to have was, as she didn't seem to know much more than I'd learned from a few books.  She also admitted that she didn't really know much about Asperger's Syndrome, which was hardly a good start.  She did drop the name into several of the meetings saying that she needed to "take it into account", but didn't actually demonstrate any understanding of what it really meant.  She also complained that I was too clever hence difficult to treat, which was a little worrying.  That's before I even start on the utter organisational incompetence and the "link worker" who never actually linked to anything.  Overall, especially in the long run, they did more harm than good.

Yes, it is definitely time for mental health services to improve!  Apart from anything else, neglecting people with mental health difficulties is likely to make them worse and compromise their independence and ability to work further.  Especially for people at risk of mental health difficulties (e.g. people on the autism spectrum) there needs to be a focus on helping people to stay well and live healthy and productive lives rather than waiting for things to get unmanageable before doing something.  This is, after all, almost certainly a more cost effective way of doing things.

£70 per session is the most exorbitant fee I have heard of!  They must be exceptionally good!

Hi there

Tony Attwoods book is a good starting point but that's it.  Its just a starting point.  There are other books out there.

I can't believe that therapist!  OMG, I don't believe how insensitive some therapists are.  Unfortunately like every profession there are people who are very good at what they do and there are people who are absolutely rubbish.  In fact I tried a psychoanalyst who said after two sessions I "...needed to chill out" a*****e.

A good therapist is a fantastic thing, even if you have to pay for it privately and don't stop looking until you find the right one.

When my eldest was diagnosed with autism the only advice j  received was being told to go out and buy Tony Attwood's book and teach myself.  On time my son went to talk to a therapist at camhs re bullying at school, he was in a relatively receptive mood when he went in, ten minutes later he came out and the therapist advised me to hide all the knives in the house.  I was so shocked that I was speehless.  They also never followed up to see if he was ok.  Disgraceful.

Hi

Unfortunately I have to agree with you.  The only help I managed to find is the books I read and the therapist I pay to see once a month for £70 a session (which is not easy when you earn under £19k) but she has seriously helped me.

If I had more financial resources I would try to start a group therapy session with other Aspergic people in the Birmingham area or maybe a parents group with autistic children.  At least there's the internet and places like this but its not the same.

100% agree.  And until services understand autism and what day-to-day life is for a person on the spectrum things will not change.

They cannot support someone with autism by treating them as they would a neurotypical.

Search on your local Trust's performance.  I searched on mine and it was appalling.