Opinions: Do we believe the NHS is capable of helping autistic people with mental health problems?

I think I'm very lucky and Wales is lucky in general that we have fairly good primary care, I certainly do, I have 3 GP's in my surgery who I trust and who are good listeners and thorough in their approach, they're also realistic about what other care is available and are quite up for patients using services like osteopaths.

I Sperg said:

they sacked me (gross misconduct apparenlty, although  was never given any specifics past "acting like a manager") the team I ended up "leading" had found all but 400 of the missing machines.

yeah that tells me your bosses were "losing" all them computers on purpose so they could steal them for themselves and sell them for money for personal gain. this is why the nhs is actually funded, its the most funded institution in the world... but its corrupt, all the money is stolen and wasted like this by the ones in charge.

I have no faith in primary care whatsoever. It’s virtually impossible to access the service. Weeks to get an appointment, consultations by nurse practitioners who often lack the knowledge or diagnostic skills to get to the issue at hand. As to mental health issues it’s laughable, or it would be if it wasn’t so infuriating. You are just not taken seriously, and dismissed without follow up or any kind of treatment   

I always used to have faith in the NHS but had a very negative experience a couple of years ago when I had a mental health crisis. I had only (finally) been diagnosed the year before that but had hope that now I and others knew what was going on with me I could at least be helped more effectively when the need arose. 

What actually happened was I found a stressful event at home extremely traumatic and this resulted in me spiralling into an extreme state of anxiety and depression. I lost my appetite, I could barely sleep and I was shivering even though it was summer. This went on for a period of weeks and I became suicidal. My family phoned the local mental health crisis team and after some back and forth I recieved an appointment to be assessed by a member of the team the beginning of the next week. At the appointment however as soon as I mentioned to the nurse that I had received an autism diagnosis the year before he effectively lost interest and pretty rapidly shut things down. Apparently in his opinion the whole problem was related to me being autistic, and he proceeded to tell me that the service was not commissioned to deal with autism. Apparently I should have contacted an autism charity and was sent away with a photocopy of the contact details for a local informal autism support group...

i dont think it can be fixed under any government, as being government run is likely the issue.

the government never will pay high wages, as that gets passed onto the people anyway via super high taxation and the nhs is already the most funded institution on the planet so they cant keep ramping that up unless we was america.... america could likely afford that, but that would require diverting their entire trillion a year costing military funds to it.

but yeah the doctors as i said are useless and require google search... they clearly are not educated for their job... why are they in those positions? ... likely because they educated real staff all left, so they have to throw any body at the job to fill it.... so you end up with doctors that dont know anything and are reliant on google search...

now why did the real educated doctors leave? ... they wanted high doctor pay like they have in america.... we cant get that, because that is a feature of private healthcare, so they leave... alot of them leaving for america to work in that private healthcare for those wages... you see, there is no way government nhs can solve the issue, when the educated doctors all want the features of a private system, the higher pay, the cut their time whenever they want and leave.... all private features... they can never get that in public healthcare... i cant see a way to fix this at all. unless you raise a new generation of doctors and educate them well as skilled doctors, but you indoctrinate and brainwash them into not even knowing anything outside the uk exists and so not knowing about private healthcare or about all these big higher pay luxury jobs the same job they are doing offered for celebrity millionarie wages in america... they need to have no knowledge of these other nations private healthcares that offer them celebrity wages.

I'm glad to hear that you feel less alone. For me, when I needed help this forum was worth more than a whole roomful of NHS therapists. The people here "get" you. Although there must be some exceptions, many health professionals won't.

Hi - I’m sorry you’ve been dealing with mental health difficulties and had this experience with the nhs. You raise a vitally important issue - in my experience and both my son’s experience (we all have an nhs diagnosis of autism) out experiences with the nhs (for both physical and mental health issues) have been far from positive. So you are definitely not alone and I have read so many things in this community forum that concur with that. 

What’s needed is high quality training in supporting autistic patients for all nhs staff. Realistically though I can’t see that happening any time soon. Also I think nhs staff need training in the need for compassion and warmth when dealing with patients - as many staff are sadly sorely lacking in that respect. Being overworked and overstretched is a part of that - it mean the human being is often not treated as a feeling person but just as a body, a brain, and not a fully rounded person with feelings or even a history of trauma. What often forgotten is the human need for kindness and care. 
My youngest son had over a year of CBT for ocd and they barely helped him at all - often it made him feel worse. And many years ago I was given anti-depressants that gave me terrible side effects and made me suicidal. The most dreadful experience that destroyed my trust. Having said that last year I had therapy from the nhs for ptsd and I had a wonderful, kind and very gifted therapist who helped me so much. So it is possible! 
So I think it’s a very mixed bag and often depends on the character and nature of the individual staff member you happen to be treated by. But overall there is a huge lack of understanding of the needs of autistic patients. When I was in hospital for a serious physical illness 2 and half years ago I was shocked at the harshness of the experience in terms of the lack of sensitivity and understanding towards my needs as an autistic person - and I think it played a part in the fact that I had PTSD after that hospital stay. 

I think often autistic people end up having to self treat their mental health problems. I’ve struggled with anxiety for years. What’s helped me in the last year or so has been studying Buddhism - especially the teachings of Thich Nhat Hanh and Plum Village. It’s helped me enormously. 
But we should be able to get good quality support from the nhs - and sadly that is so often not the case. 

Let's all agree to .....agree then.

I agree in terms of most things.

The more you look and think about things & people, there more of it there is!!

This "triggers" me. I already had my suspicions about the NHS but then I got the ultimate "snoopers dream job" auditting and updating every computer in the local NHS service. (You see EVERYTHING as an IT geek, and no one sees you...)

I learned two things that shocked me. 1. How ECT actually works and how the service is delivered. 2. How many high paid cushy jobs there are for every low paid service delievery worker. 

I saw awesome levels of DGAF (don't give a F***) and in the I.T. section incompetence, low quality result (dr's waiitng 20 minutes to get a log-in!!) and a really, really piss poor leadership attitude twards the service users. VERY, VERY few of the people I met were  enthusiastic about anything except staying out of trouble and getting out as quick as possible.

We Audittors discovered that they had LOST 1400 computers, by the time they sacked me (gross misconduct apparenlty, although  was never given any specifics past "acting like a manager") the team I ended up "leading" had found all but 400 of the missing machines.

And don't get me started on the psychology suites and offices... I don't "snoop" as such but I do LOOK AROUND, and their offices were like windows into their weird little souls...

Great thread Jermaine. Your depression from my perspective stems for the fact that you have still got your eyes open, and can still clearly identfy and describe what you see, without lapsing into condtioned helplessness.

It's not your FAULT or FAILING, but it IS your PROBLEM. Problems are solvable.

I've personally been their trying to do myself in at 24, and like you failed to do that. (I suspect because we are't really bonkers). 

You are a young man living in England, it is depressing.

Your masculinity is derided, (as for expressing it, well it isn't yet illegal, but we are literally getting there fast..) and there are very few satisfyng and fulfilling jobs available anyway, and anything that pays well is where all the psychopaths and vicious people congregate, so even if you get there on merit(!) the workplace is a psychological cage fight.

So most of us who don't kill ourselves or generally go off the rails or simply give up, have to CREATE our own way OUT OF NOTHING.  Almost no-one is going to help you. Some will, but I've found that you can only really count on yourself.

SADLY I find that even counting on myself only works some of the time, too. yet, young Jermaine, it is very possible to put in another forty years in this crappy life, and come out smiling.

I sit here aged 64, read your profile and read your EXCELLENT AND INCISIVE post here about the NHS (It WAS once a service we could be proud of) and it's failings.    

FWIW, when I did my NHS contract they had all sorts of depression scoring charts, which I used to score myself and I was 100% GET HELP before they sacked me on a pretext... I still survived.

I like trite little "sayings" and I have a whole list that I've picked up over the years and my favourite is:

"Don't let the bastards grind you down". 

And I really like that "tub thumping song"... 

And if you ignore what the people with the blue hair say, being a MAN is about confronting life, rolling with the punches, and prevailing. (In my case "prevailing" does inviolve and awful lot of knowing when to flail away fruitelessly and when to go and take a lie down).

That gets really boring, really fast, and you have to KEEP DOING IT, so the rest is about 1. Adding your own style, and little flourishes to the process and 2. Finding your cat... 

IrishInManchesterUK said:

so the many issues that we see are far deeper than it would appear at first glance when we scratch the surface

I agree here, in terms of mental health

Aside from Labour wanting to privatise the NHS, in general terms, the whole mindset relating to mental health issues and hidden disability needs to fundamentally and radically change here in the U.K. so the many issues that we see are far deeper than it would appear at first glance when we scratch the surface - all too often and for many decades, mental health is the poor relation when it comes to NHS or other funding, because there is a certain mindset out there that mental health and hidden disability issues are (somehow) “not real” and this is something that probably requires a wider cultural change in social attitudes - being Irish myself and living almost 23 years here in the U.K., (where our mental health services are even worse under the HSE and the older health boards) - when I come home to Ireland, it’s a similar thing to how native Irish people still living in Ireland treat our Irish diaspora abroad, such as myself living in the U.K. as long as I have, for example renewing my Irish passport from here in the U.K. is always made purposely more difficult by the Irish government long before Brexit, there is still strong cultural resistance to allowing us Irish abroad to vote in Irish general elections and referenda, when I come home to Ireland and express any opinion or observation on anything that I see in Ireland from people whose minds are closed to change, I’m swiftly told that I don’t understand that I’m “wrong” even though I’ve done my research before making any comment 

I am in complete agreement with you. I’d prefer you bring your soapbox out more. I’d love to join you, but I’ve had to turn to substances I’d rather not name to numb my mind, and it has numbed my political anger, too. Typing this out has made this realisation hit a little harder, now.

Please, do not feel the need to apologise. It’s not the NHS’ fault it’s not getting the necessary resources to help everyone. You don’t blame a child for being underfed. You blame the parent.

Thank you for your input.

I wonder if this neurotypical belief system can be taken advantage of, if we can force them to take the first step, somehow, and if that means that they will continue to take steps, after the first step has been taken. I wonder, but I have no idea what would be the starting point for figuring this out.

Seeing that anyone has replied to this has already made me feel less alone. I am finally interacting with people who understand. It’s amazing.

I’ve had to wait in A&E for around 6 hours after trying to overdose. I remember a young girl had passed out while waiting. The waiting area was full, and people were getting antsy. Another time, I had ended up creating a couple deep cuts on my fingers, as a result of a meltdown, and I received a text that my waiting time was over an hour, while I was dripping blood on the hospital floor. I was fortunate that someone ahead of me allowed me to go first.

When it came to treating me, the cuts were stitched up pretty quick, and the nurse stitching me up was fantastic. I went in there crying, talking about I don’t want to be alive, and I came out laughing and smiling. When it came to the overdose, I’d imagine they felt comfortable taking their time because I hadn’t passed out or thrown up. I don’t think I had taken enough pills to do much of anything, besides make me tired.

It sounds like we went to completely different services. I’m sorry the NHS in your area is so useless. I don’t blame the NHS for being worthless. I blame those in charge of the NHS, and I blame those who put them in those positions. I blame politicians. All of them. The ones in power don’t serve us, and the opposition don’t fight hard enough for us. Watching them argue on TV, it’s like watching a comedy show. It’s like they’re pals, just kidding around. They don’t understand, or they don’t care about how they are affecting those of us dependent on these services. Those of us who cannot afford to go private. I’m not sure I’m unable to afford to go private, but I don’t intend to. I intent to stick with the NHS, as the poorest of our nation have to.

Oh boy. What a world we live in. What a situation to be in.

I don't think the NHS does mental health care very well for anybody, it's understanding is based on a basic drug model of take 1, 3 times a day for 7 days, or a broken leg, imobalise in a cast for 6 weeks. I've seen counselling offered  as 6, 45 minute sessions, most counselling clients have only just started to trust the counsellor enough to start opening up after 6 weeks, how do you deal with years of abusive childhood in 6, 45 minute sessions? The NHS dosen't like that many theraputic interventions will take months or years to resolve, some clients will need time, sometimes a few months to go away and process whats comes up in therapy and create changes in their lives and then come back and do some more. The NHS dosent' look at the cost benefit analysis properly, it see's a lot of therapy happening and not a lot of "getting better", often there's no "getting better" like you would from an infection or a broken leg.

Mind you I think however bad it is now it's better than when I started counselling when one of the major worries was that a client might have an emergency, try and commit suicide or something and doctors would shift the blame with families onto us because we wern't "proper" professionals but interfearing amatuers thinking that mearly talking about things could do any good. I remember the days when people who had serious mental health problem or learning difficulties, such as Downs were routinely sterilised and many were insititionalised. I think Thatcher's reforms went to far the other way and what we see now are to many "victims of care in the community", people who really can't cope, who are abandoned.

I think mental health services are fragmented, people don't see enough people to get any sort of multidisciplinary approach, there seems to be a disconnect between psychiatric services and comunity ones. They're all over stretched and under resoursed. I'm lucky that I managed to get mostly free or subsidised private counselling and therapy, but much of that has dispeared due to austerity cuts.

I do think that the NHS is management heavy, there are probably whole layers of managers who could be removed. My friend who worked as a dementia specialist nurse, said one of the problems is that once you get to a certain level, you either have to stay there or to be promoted means giving up patient care and becoming a manager. There's no training for nurses going into management, many don't really want to be managers, they want to look after patients.

In general I think that when you get refered to a specialist and they can't help or they think your problem comes under another specialism, you shouldn't have to go back to your GP and get refered all over again and wait another 6 months or a year.

This team is currently supporting me.

It’s not surprising to hear that your experience has been similar. I wonder what would need to be done by us for us to be able to receive adequate support. 

i dont believe the NHS is capable of dealing with ANY problem at all.

i went in with a dog bite.... i kid you not, they sat me down and opened up their web browser and googled how to treat a dog bite.... no seriously, i already know how it supposed to be treated myself as its common sense, its bare basic knowledge... they had to google it... and ofcourse found they had to clean the wound and give me a tetanus jab, which i already knew, i went in for the purpose of getting a tetanus jab for it, but they didnt know anything and had to google it and thats just bare basic knowledge youd know as a child before your even educated and they didnt know and had to google.... your doctors are as good as google search now, and we used to mock people using google search to diagnose problems, and yet our doctors are now reliant on google search for the most basic of things that they honestly should know.

i have no faith in the nhs at all... im actually afraid of how bad it is as if you need actual serious help you wont get it, they will cause your death, they dont know what they are doing. they are clueless.

my indian friend at work had kidney stones, she went to the nhs crying in pain and they ignored her sent her away and said to take some pain killers and ignore it... they didnt even diagnose properly they kept saying "could be this, might be that" and was unsure.... she was really annoyed at this because in her country you get treated right away, and you dont get sent away without treatment. she went to india for 2 weeks on holiday, while she was there she went to a hospital and got surgery, in india you can get surgery on the very day you walk into the hospital and get seen to right away and surgery within at least 12 hours.... they sorted her issue and removed 8 kidney stones... shes ok now.... she was suffering under the nhs because they didnt do anything and couldnt do anything and didnt even know properly and sent her away. she now agrees that private system is better than this. only cost her like £700 but she was willing to pay as she wanted it sorted and it was agony and the free nhs doesnt do anything and leaves you suffering in pain and refuses to help.

we have to face the fact the nhs needs to be completely changed or scrapped....  for the betterment of our health, so that we can actually have a health service.

Lotus said:

From the inside, it can be very disheartening and demoralizing. It's had decades of mis-management.

Agreed - this is my understanding too, and the point I was hoping to make above.

Lotus said:

However, that does not excuse a health professional laughing at a patient, or giving them "advice" which is inappropriate or possibly harmful.

Agreed - absolutely - no doubt!

I was making a specific commentary on the specific question raised by #Jermaine, namely;

Jermaine said:

In short: I have no faith in the NHS’ ability to help autistic people. How about you?

It was this specific matter/question that is (hopefully) addressed by my comment.

Hi Number

I used to work in NHS finance some years ago, so I completely understand what you are saying. From the inside, it can be very disheartening and demoralizing. It's had decades of mis-management.

However, that does not excuse a health professional laughing at a patient, or giving them "advice" which is inappropriate or possibly harmful. I feel that bad treatment is worse than no treatment.