Mental Health Services

Can we all keep adding brief details here, of our experiences with the MH services, in relation to undiagnosed, misdiagnosed, unwillingness to recognise, offer support and poor attitude to autism?

And all vote above? If we get enough, we could all print it off and present to our MP’s?

Just a thought......

I wonder how many are living their lives as undiagnosed autistic, and told that they have a mental illness? Is it a deliberate act of the medical professionals not to identify autism, because if they did, the need for mental health services would reduce considerably. Living as autistic and not knowing it, is very damaging and painful for so many.

The medical professionals approach and attitude to so many is criminal. If more people complained eventually someone may take notice. 

Hi everyone, I'm glad to see this discussion about mental health services. This is a topic that deserves our attention and action. I strongly believe that accessible and affordable mental health services are crucial for people experiencing mental health problems. The cost of mental health services, particularly in the UK, can be a major barrier for many people seeking help. It is heartbreaking to see people unable to get the support they need due to financial hardship. For example, the betterhelp uk platform has gained popularity, but its cost can vary. In addition to addressing the cost of services, there is also a need to focus on building a comprehensive mental health infrastructure that meets people's diverse needs. This includes adequate funding, training and qualification of mental health professionals, and destigmatizing mental health to encourage more people to seek help without hesitation.

I'm sorry I'm a bit late to this as I've only just joined. 

In theory, any qualified psychologist should be able to provide help. Obviously it depends on how your autism affects you with different aspects of life. They should be able to provide the same person each week as its only 6 sessions and they try to keep you with the same person so you can build trust. It helps give better results. 

It may be worth looking at local private professionals. I had to pay for a private assessment as the NHS diagnosed me with severe depression and severe anxiety. The private assessment has shown that ASD is highly likely (along with a connective tissue disorder) and the professional has been able to provide a report with recommended treatments, plans of action etc. 

I'm booked for CBT tomorrow... I get to break the news to the guy that I'm being referred for an autism diagnosis but would still like to attempt CBT. Its difficult I know as I've also been passed between services for over a year before getting to this point, even with suicide attempts, but keep persevering. You'll get there eventually.  

Sadly like many i can relate.  Dealing with local mental health services is a horrific experience.  Typically as soon as you see a therapist (after many months waiting), they cant wait to tell you when youll be leaving them.  A private therapist suggested autism, which i then looked into and agreed with.  Speaking about it to the NHS folk, they werent interested at all, just wanted to put down a lifetime of issues to anxiety and depression, they are so short sighted.  I went to my GP and asked for a specialist assessment, which surprisingly they agreed to.  Ive since heard a couple of weeks ago that funding was agreed, so now im just in limbo waiting, no idea for how long or what to expect

We are all there for you, I am on anti-depressants just to keep me stable until I find my equilibrium, not that I want to be on them but due to unfortunate circumstances.  I find that treating yourself helps and being positive about who you are as an autistic person can help.  Be gentle with yourself and enjoy the sun when it shines, sending love and goodness your way.

Thank you so much for taking the time to write that comment, it’s certainly made me aware of some services I didn’t know of before and that really helps me to hope for better help than I have currently.

I think I’ll be assessed by CMHT again if they will see me. The intensive home treatment team said I should have longer-term help from CMHT, but of course whether I get that depends on if CMHT agrees. They’re certainly making it hard work to even see them once, never mind long-term! You are right, it’s probably down to the lack of money, but it’s far from ideal when you’re really desperate for some help.

I’ve been told that whilst I am waiting for my referral to be dealt with by CMHT I am just to phone the crisis team if I am suicidal. The problem with that is hat I really struggle using the phone, and it’s worse when I’m upset. The mental health staff are aware of this, but it’s still all they can offer me for now.

My mood is not wonderful at present, but I’m just trying to keep it stable day-to-day. I find that being on here and talking to people I can relate to really helps me, so that is what I’m tending to do when I don’t feel great, though sometimes I just can’t bring myself to it. I have a very busy few weeks coming up and hopefully it will keep my mood from dipping, rather than pushing me over the edge, then after that I should have heard from CMHT with any luck. 

The hole may have deepened, but I’m still trying to climb out of it at least!

NAS36609 said:

I have now found out that CMHT somehow didn’t receive the second urgent referral sent by my GP

Well done for persevering. Is it a home treatment team your GP has requested? Or is the first appointment likely to be a re-assessment?

NAS36609 said:

an awful lot of upset/frustration has been caused to me by them. Why on Earth do they make it so damn hard?

Money (lack of), reorganisations, cuts, overworked admin staff going off with stress, reorganisations, under-trained admin staff, inaccessible psychiatrists who've made their own compromises with the system...  I've had four copies of the exact same appointment letter from my CMHT, and then been sitting in a waiting room for an hour, before being told I'd been sent a letter cancelling the appointment, which never arrived.

NAS36609 said:

I often wonder if they do it deliberately hoping that you will kill yourself and then they would have one less patient do deal with...

Well, it's a form of triage I've also wondered if some see certain services (long-term therapy) as a dumping ground. A lot don't know how to react to an autism diagnosis.

It's a long time since I've been considered a suicide risk - some areas seem to have crisis cards, often mentioning A&E, crisis lines, crisis houses, and voluntary crisis services.

I think the mods here haven't posted the usual helplines:

NHS 111 service:   http://www.nhs.uk/NHSEngland/AboutNHSservices/Emergencyandurgentcareservices/Pages/NHS-111.aspx

The Samaritans also provide confidential non-judgemental emotional support, 24 hours a day on 116 123, or by email on jo@samaritans.org.

MIND have information pages on coping with self harm or suicidal feelings based on the experiences of people who’ve been through it that you may find helpful. https://www.mind.org.uk/

If you are very close to doing something to hurt yourself or others - call 999 now or go to your nearest A&E department. There should be someone there to support you and make sure you get ongoing support.

If you need help with an autism related issue, our helpline can be emailed via webform https://www.autism.org.uk/services/helplines/main/questions.aspx or they’re open Monday to Thursday 10am-4pm and Friday 9am-3pm on 0808 800 4104.

Besides all that there is this place: http://maytree.org.uk/ They provide intensive residential support during a suicidal crisis, with an interesting proviso: you an only ever go there once.

Have you talked to your GP about if there is any additional support you can get while waiting? Mine wasn't an urgent case, but the GP found a list of voluntary agencies that provided subsidised or sliding-scale counselling, one of which was quite good. Maybe they have a directory that covers your kind of situation.

And finally, I'd like to mention mutual-self-help/peer-support groups. Mind has a list that may be incomplete, and there could be one near you: https://www.mind.org.uk/information-support/guides-to-support-and-services/peer-support-directory/about-peer-support/ I know face-to-face depression groups can be good at listening and sharing information and I think many people who attend are probably undiagnosed autistic.

Fingers crossed for you.

I have now found out that CMHT somehow didn’t receive the second urgent referral sent by my GP, despite the surgery confirming they sent it two weeks ago and CMHT being fully aware that they were to expect another referral on the day it was sent! So, yet again it fell to me to chase them before anything at all was going to happen and now it will be another wait of 10 working days to see what they do with the referral this time (now that it has been sent via email and CMHT have confirmed receipt).

It’s over a month since I was in hospital for a suicide attempt and frankly I don’t feel any more settled mentally than I did then, yet I’ve had absolutely no help from mental health services in this period and instead an awful lot of upset/frustration has been caused to me by them. Why on Earth do they make it so damn hard? I often wonder if they do it deliberately hoping that you will kill yourself and then they would have one less patient do deal with...

Well I asked the GP to go back onto 'Sertraline' until I have more support as I need to be calm for job interviews, I am seeing him or the other one on the 21st May for a follow up, he had not even read my notes...My sisters when they found out were angry and disgusted at my treatment, especially when they heard that all this pent up anger, frustration and stress had led to me self harming.  However it was a cry for help and support, very naughty of me and not advisable.

I was advised to come off anti-depressants by the psychiatrist who identified that I had 'ASD', as he hoped that the School would put in safeguards to support me and I didn't seem to be under any stress.  He advised the GP to monitor this withdrawal.  So in mid March I went and saw him, I followed his instructions about withdrawal very carefully after having come off tablets last year without supervision and I had repercussions.  It took me a whole month to come off 'sertraline slowly cutting down, as the Doctor advised.  I had come off paroxotine after being on them for eighteen years and my body had got used to them.  They upped my dosage to 40 mg and I had raised liver functions and was taken to A & E emergency with chest pains brought on by stress etc.  No I have had no 'Care Assessment' either as I seem to be coping alright. this was before the 'Autistic' service discharged me.  So I had come off medication as advised by the psychiatrist, followed the GP's advice about withdrawing slowly and was no better off.  I have never felt more abondoned and lonely in my life.  I have no family who live near and as an old friend on our estate within Beaumont Leys states 'it's do it yourself' in Leicester.  Even the school couldn't be bothered, so I thought why should I bother, I could lie in bed all day but then life pulls me out of bed and I have to fight to get what I want in life.

Sorry to hear it's been so hard, but glad you had a more peaceful and constructive day yesterday, and have some support from your union and GP,

Bardic Poet said:

I was advised to come off anti-depressants

By whom? For what reason? They may not be helping, but I'm sure you know it's just as important to taper off them under medical supervision. Is a change of medication something else to add to the pile right now?

Did you have a Care Act needs assessment? Is the description of needs correct, and are social services trying to provide accordingly?  Hope you feel better soon.

Hi just to let you know I am on the sick after a crisis on Sunday night, when I screamed down the phone at my poor old Mum, then phoned 111 the NHS crisis line for the second time in a week and sobbed about the lack of support within work and community.  Not only that I was advised to come off anti-depressants with nothing put in place,  I even self harmed that night and reported that to the GP the next morning as my anger, frustration and stress got the better off me.  The emergency GP stated that I had been left to 'float' with very little support from social services, the mental health team and no carer to support me.  The next day I went to see my GP and admitted I self harmed, My employers have laid me off as they said there are too many 'variables' at work and so I contacted my union, UNISON, who said that they should have done a 'stress' audit.  I will be seeing my GP again on the 21st May, have started looking for alternative jobs after my fit note comes to an end.  I was so volitile on Monday morning, I could not work with kids, I might have eaten them for breakfast, we aspies are like the 'incredible hulk' at times.  It was a better day yesterday, celebrating May day in my favourite wood and contacting agencies and updating my Curriculum vitae.  There is also a sense of relief that finally someone is listening and supporting me, as I could not contact the NAS helpline as I work between 10.00 am and 4.00 pm.  

I lost my cool more than once too at these places when I was still in the UK. I wrote a letter of complaint to an MP when still living in the Midlands, unfortunately after moving  the MP was on the wrong side. I never thought it would just keep on getting worse in the UK. 

That’s clearly where I’m going wrong - I don’t go to pubs, so I don’t find the fellow knitters! Interesting point regarding going deaf, I’m now wondering about that point myself...

I know a lot of young people who knit, mainly medical students and trainee psychologists who meet in a pub, a bit uncomfortable for autistic ears but it's worth it at times.  Sometimes I wonder if I grow deaf in my old age like my Nan, will I have less sensory problems and be more blissful and calm? 

Bardic Poet said:

sometimes my colleagues can be more frustrating than the kids and then I loose it.

Oh, I recognise this scenario (I’ve coached sports to children for a long time, and the problems I’ve faced in those jobs have never come from the children...). I think it’s great you’re being a role model for the children, autism and all.

Glad you’re finding groups outside of work, my sports are my only social life but I enjoy them greatly and they’re a good stress-reliever on particularly tough days. I’m unable to do them currently as I’ve had surgery on my knee, and I have noticed the effect it has had on my mood. I knit too and recently started cross-stitching as that can be a good mind distraction, though I do get some odd looks from my peers when I say I’m knitting something (as most people my age don’t know how to knit)!

Yes that's the advice I was given by the 'Occupational Health', part of the CMHT team and I have started doing that. In the meantime I am building a life outside work which helps with the autistic support group, knitting group, etc and have already contacted National Careers Service.  The specialist career service for autistic people only support those who have a care assessment and as I'm coping reasonably well according to the psychiatrist, I don't qualify.  I have a had better two days at work, and am standing my ground, I always go back and never run,  Although the children are very challenging I have a love for them, although it's too much at times.  So I just have a breather when I feel like screaming, as most teachers and go back.  Being a teaching assistant is very rewarding but stressful, especially on our estate, with a large number of neglected kids, who may be on the spectrum themselves without knowing.  So sometimes being an autistic TA is a positive role model for them, despite the occasional bad days.  It's good to talk to those with a diagnosis and encourage them but sometimes my colleagues can be more frustrating than the kids and then I loose it.

That’s the problem with the job centre, they won’t let you only apply for jobs that are suitable for you given your autism, which only adds more stress and loss of confidence in work. They don’t seem to understand that the wrong working environment can lead you to a complete mental breakdown. Therefore I can totally understand why you went back to your old job. As I say though, whilst you’re working there don’t give up on looking for something that would suit you better (by your own means, and not through the job centre of course).

Well last year I did leave my job after eight years at working in the same place, I was fifty one then and I went for eighteen interviews, lost my cool at the job centre numerous times which made me seek an autistic diagnosis.  I still did not get a job after eight months and by that time my GP had doubled my anti-depressants, I was under the care of a psychiatrist and the CMHT, whilst I awaited a diagnosis.  In fact the diagnosis made me go back to the same job, especially when I was bullied at the Job centre, threatened with sanctions and would have to do shelf filling for nothing even as an intelligent woman.  The job I am in now, may be hard and stressful, but I had more panic attacks in the job centre than I do in the school.  It was an answer to a prayer when I went back, I am now fifty two and am growing stronger each day.  If someone with epilepsy, asthma or diabetes can manage then I will have to learn to cope.  However I am still looking for a job but as I tell my colleagues it may be tough but it's unbearable on the other side of the fence, where the grass looks greener.