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

Bronglais has had a bad rep for years, but I'm not sure you can take an incident from 1976 and project it onto 2024, although I'm sure it remains vivid in your memory.

But, yes Anglesey does seem to have fairly good services, especially when talking to family in England, my son has been diagnosed with COPD and nobodies even listened to his chest, he's had no in person contact with his GP's who are all locums, so there's no continuity of care. My GP couldn't believe it when I told her.

"belief web" is something I've definitely seen, good to see others must have seen it too.

There's so much pantomime in life I find it frustrating, it's like I'm in a circus but I'm the only one who sees all the clowns. (Probably a sixth sense quote joke in there somewhere!)

I have no faith at all. They seem to be decades behind in that respect.

TheCatWoman said:

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

For the NHS management they don't look at the care of the patient but the maths involved in that care - they realise that to give you the care needed to make you feel better and be a more ably functioning person would cost them thousands of pounds and even then you would still be autistic and likely to experience a relapse (eg meltdown) again possibly many times.

You become a big drain on their budget at this point so they have made a concious decision that it is better to offer the bare minimum for good PR than to offer you something that works.

The fact that we have much higher mortality rates (often at our own hands) is a good outcome for them - one less trouble patient who probably doesn't contribute tax/NI and will only consume services.

For these managers is it an obvious way to save money and since we are so poor at advocating for outselves as a group, there is unlikely to be much resistance.

This is the WHY it is this way and with government funding looking just as sketchy under Labour then I don't see it ever changing.

I think the best solution is for us to focus on looking after out own - work on charities (like NAS) and spread understanding of autism where we can. Let other autists know they are not alone and guide them to help where needed.

It won't work for all but it may work for enough to make a difference.

Really??

In 1976 I almost DIED in Corris waiting for someone to get their act together and tell us why i was projectile vomiting, then get me to somewhere less "hillbilly" where I could actually have my inflamed and about to burst appendix removed! (Bronglais General Hospital) by screaming and speeding ambulance. My dad (who was no slouch behind the wheel) said they went proper fast!

To be fair, it presented during saturday night and none of us thought it serious until I could no longer bend my body in the middle next morninng... We threw an emergency at a tiny cottage practice at 09:00 on sunday morning!

They did save my life I believe, so I cant actually complain reasonably, and that paraggraph is very much tongue in cheek, but it was the last time I felt actually safe and "looked after properly" in a hospital/NHS setting, it's been obviously declining inexorably since then.

Here today, the emrgency ambulance would have quoted 5 hours (TBF it actually turned up in 3.5) if the scene I witnessed the other day playing out where one of my more criminally inclined frends was taking time out from his busy day to help a neighbour he found lying in the street with a head wound... 

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.