to think that mental illness does not have a loud enough 'voice'?

[Foxyspook]

I don't want to turn this into a denigration of any other illness societies but...

www.theguardian.com/commentisfree/2015/nov/03/10-steps-to-mental-health-equality?CMP=share_btn_fb


Cancer has always had a very robust charitable network, research money, and lobbying power.

Alzheimers (since the time my mother got diagnosed 10 years' ago) has come on in leaps and bounds. Still has a small research budget compared to cancer but I expect this will improve. And Alzheimers Society is a constant protester on the news - which is great

But, I have suffered from very severe and enduring mental illness since the age of 9. I am now 50 in a couple of weeks. I would not say the drugs have improved much in that time - those with psychosis suffer horrible side effects from the drugs to suppress symptoms and stabilise mood.

The care in the community is being cut back to the bare bones and in patient care is of poor quality and only for emergencies (and even then in the time I have been ill - the definition of emergency has changed considerably).

Unless we are lucky - usually with our family backgrounds or with some remission times at crucial points of our development, we operate at the margins of society.

I understand why I don't protest - because my health is extremely inconsistent and I am sure it is the same for most others with schizophrenia or bipolar or any of the more incapacitating and incurable mental illnesses, but surely the charities - eg. Mind could get our position heard at a higher volume?

[NightTerrier]

Unfortunately, it seems to depend on where you live. My GP an CHMT are brilliant and I can't fault the support I've had.

However, I get the impression that illnesses like bipolar and schizophrenia get priority and it's always easy to get a referral. Although, they are really good with anxiety, depression and OCD round here. Local people moan about it, but it's so much better than where I used to live. All I'd get was a GP appointment, a lecture about lifestyle and a course of SSRIs.

It's scary that they're cutting funding and services all over the country.

[NightNightBadger19962]

An older relative of mine, in his 80s, after years of swapping stories of arthritis/heart problems/joint pain with his peers, started to mention his BiPolar disorder and medication - he and his wife were then amazed by how many people then spoke about their own mental health issues and medication. It was very de-stigmatising for them, having hidden it for so long.

[TeaInGlasgow]

I'm now at a point where depression and anxiety have been present for just over half my life. In all of that time I have seen little increase in society's view on those afflicted with MI.

In my personal experience SAMH and GAMH were unable to help me as they required a referral from a doctor or social worker. My doctor at the time told me that the surgery didn't do referrals like that and that, as an adult, I should be able to do the things I was struggling with and should try harder. I did ask another doctor at my local surgery and still was denied SAMH/GAMH but given a referral to counselling. The counsellor I spoke to told me that their service could not help me as my problems were not something counselling could help and so that was that.

There are still too many who believe that 'mind over matter' is the cure for all mental problems and that when that isn't the case, it is simply because we aren't trying hard enough. They also lack a proper insight into how MI can affect a person.

[Graphista]

MissVictoria so sorry you experienced that, I've had similar 'well can't you just get a taxi door to door', 'you're not helping yourself', 'you'll have to come in if you expect a prescription' (locum at gp surgery regarding my anti depressants which I don't normally have to see gp to get, my own dr and others in the surgery know my situation and understand).

Also on Facebook (and yes I've seen those shitty ocd 'quizzes') 'bit depressed today' 'I'm so depressed' (in relation to having a crap day not actual depression sufferers) NO you're a bit fed up, even a bit down maybe but you're NOT depressed for one day!

[MissVictoria]

Oh my goodness no there is nowhere near enough recognition for mental health issues! An illness or injury you can see, everyone is sympthetic and understanding of, but as soon as it's an "invisible" illness/injury of the brain, "you're making it up" "everyone feels down sometimes" "just snap out of it" etc.

One such judgement i'll never forget was by a doctor. I've had severe OCD since i was 5 years old, never known a "normal" life. 7 years ago i had crippling abdominal and chest pain, like indigestion on steroids, was holding my breath as it hurt too much to breathe, i couldn't sit, lay down, stand up, be on all fours, nothing gave any relief, so my dad took me to hospital. The first thing they suspected was kidney stone and the GP wanted a urine sample, which my dad explained that because of my OCD (it's all about using toilets and the associated "germs") i wasn't capable of using the toilet outside of my own home so i couldn't do the sample. The doctor laughed in my face, said he was an "expert" in my problem, called it "shy wee syndrome" (for the record, i'm not simply uncomfortable using a public toilets, i can't use ANY toilet other than the one in my home, and haven't done in about 10 years, for a mixture of deep seated MH reasons) and said he would force me to doing the sample. My dad was so wound up his eyes went almost completely black and he was about to explode at this guy for laughing and taking the piss out of me and dismissing my very real illness as a bit of shyness. Thankfully he got called away, and his shift ended whilst he was gone and i got a lovely lady doctor after who was very sympathetic. The nurse who witnessed all of this, started asking some really uncomfortable personal questions, because she'd never even heard of OCD. We weren't allowed to make a complaint, we tried but got shut down and told he was a temp from an agency so a complaint couldn't be made.
OCD was pretty unheard of mainstream until a few years ago, i got really upset when a few comedians made jokes on TV about setting off a person with OCD because their reaction would be "hilarious" to watch. If they'd made a joke about taking the oxygen tank away from someone with breathing problems, or the wheelchair of someone who couldn't walk, people would have been outraged, but it was apparently ok to joke about torturing a mentally ill person.
These days it's the "in" thing to have some sort of disorder it seems, and OCD seems to be a favourite. I'm sick of the "How OCD are you?" quizzes floating about on social media, because they're absolute BS. Every single one i answer honestly and get the answer "Not OCD at all" because it focuses purely on things not being in an exact pattern or perfectly symmetrical or lined up dead on etc, as if thats the only thing OCD is.

So many people have NO idea that OCD is listed as one of the top 10 most life quality destroying illnesses known to man, right alongside cancer. Yet, because there's no physical symptoms and its an illness of the brain, it's almost completely dismissed.
No wonder people are terrified to go to their doctor or talk to family/friends and employers if they thing they may have a mental health problem, so much stigma, so little understanding.

[Graphista]

I'm in Scotland, I've been waiting 5 weeks for contact, just emailed again today. I was under crisis team, was released from their care, assigned someone who clearly knew very little about mental illness let alone my particular conditions (eg re my agoraphobia 'can't be that hard to just walk to end of street' when I'm having panic attack just answering door!) called and politely requested I be assigned someone else, assured that wouldn't be a problem - 5 weeks later nothing.

Friend in another nhs district with bpd has been refused treatment because she rejected a medication because she experiences serious side effects with that med. she was on another med they're refusing to prescribe.

It used to be much better up here.

[ChangingNamesAgain]

Yes night you are correct really many mh professionals being prejudice against pds. Despite the high cross over with attachment disorders & ptsd. Although from a medical pov they become harder in that there's not licenced Meds for them (although I think there maybe one or two either now licenced or on the way to be). The dsm updating bpd criteria was long over due and a big step, it's much less gendered now.

Re mind not oppeating in scotland- Scotland has a significantly better mh system that England and Wales. In some way ut has to- much higher sui rates- but the local service has a much more hands on approach than England. There is ofcourse much less private option in Scotland which again helps, and the choose life campaign is fantastic- as is asist training- and the likes of samh's peer support worker posts and there media campaigns and approach to tackling stigma (op you should probably look that up- they actively campaign and lobby the gov).

I also agree re camHS, they are more than over worked and are very much a law unto themselves- they can simpley decline referalls or insist on parenting courses instead and refuse imput. Ofcourse parenting courses are not all bad, especially the more supportive ones that help educating around the different approaches for pda etc, but why a child's treatment should be dependant on parents managing to take ten weeks of one day off to attend a course when they may loose their job because of it, and some parents simpley might not bother, is beyond me. A child needs to be a patient in their own right.

[Graphista]

Personally I think there are certain areas that should only be under cross party full parliament control ie not subject to partisan whims.

They are:

Health
Education
Employment.

[CitrusSun]

Agree with all that has been said. I work in the field of mental health for adolescents (I also have been a sufferer of depression for many, many years) and we are one of the only units in the country, the budget for mental health from the government is a minuscule amount compared to physical illness, it is the poor relation, nothing sexy about depression/self harm/suicide, let's sweep that aside, yet I say ignore it at your peril, there is a whole generation of kids who are under enormous pressure in today's crazy modern life with its pace that, unless you're physically and emotionally robust, you can't keep up with, that are needing real help and it will only get worse. As usual the government ignore and deny until it's a crisis. They did nothing about Alzheimer's until they realised that people are living longer and Alzheimer's will be more common, surely at least ten years ago, had they done their predictions correctly, they could have put something in place, rather than fire fighting when it reached crisis point. It'll be exactly the same with mental health, but they'll do nothing as it's distasteful and they don't want to acknowledge that the regime of this society has so much to do with how overwhelmed many young people feel today.

[Foxyspook]

endofthelinefinally, really agree about NHS general staff and prejudice. Also the things that have been said to me by psychiatrists are quite unbelievable - really recently as well. In a very agreeable way, not because I am being difficult!

[havingabadhairday]

endofthelinefinally it's impossible for under 18's to access services as well, CAMHS is so overstretched.

MH services need more money. A shitload more money. GP services need to improve and across the board staff attitude needs to be better, and I include staff outside of MH services in that. The NHS probably needs it's own dedicated anti-stigma campaign.

[NightTerrier]

MagicChanges, I don't think psychosis is more serious than depression. It's If something debilitates you, it's serious. I hope nobody here feels that their problems with depression and anxiety are being minimised. They are both awful.

[Foxyspook]

Really appreciate all your answers. It is very easy to feel frustrated and alone - glad that others think the same way.

[endofthelinefinally]

One of the most difficult things IME is that it is impossible to access support and help/treatment for anyone over 18 with mental illness.
The person must ask for help themselves and turn up for appointments, cooperate with treatment. All of this is difficult or impossible for a severely mentally ill person to do.

It costs the tax payer less when people end up dead from drugs/alcohol or suicide. (I have lost 2 people close to me due to mental illness).

[Goosewings]

I agree with you OP that more money is needed and MH could really do with more investment not less.

I do think though that there are more and more MH charities popping up covering ever broader but also more specific areas of mental health. I see things about mental health on my facebook feed several times a day. One thing these charities are often trying to do is raise awareness and fight stigma. By doing so they are actually battling against the causes of mental health as many people's condition gets worse because they have tried to hide it for too long or they feel that they need to put pressure on themselves to be normal.
That isn't to say that more investment in drugs, MH professionals and wards isn't needed. Just that perhaps the charities feel that at this point in time keeping the momentum going with raising awareness and helping people to help themselves and those around them is the best value for money.
If mental health becomes more openly spoken about then hopefully campaigns for greater investment will be more successful.

[funnyandwittyusername]

Simply because it's not "fashionable" or in the public eye. I didn't realise until I started my job just how utterly appalling mental health services are in this country, nor how prevalent.

We have it completely arse about face. MH services are run in a way as it's what's best for MH services not the patients.

[BadKnee]

Agree absolutely. I have been trying to get help for a relative - impossible.

I have always suffered from depression - seriously twice . Had goo treatment the second time.

However.... the cause its not helped by everyone who feels a bit stressed or a bit down talking about "the effects on my mental health" every time they don't get their own way.

[MagicChanges]

YES OP I agree - was only bemoaning about this to DH yesterday. I don't begrudge research into cancer and other illnesses of course but I never hear anything about research into brain disorder - I think medics are aware of how every organ in the body functions and malfunctions apart from the brain, which is the most important organ in the body - maybe it's just too complex to even tackle. And yet we keep being told how many of us are going to get alzheimers in the coming years.

I am also absolutely sure that the stigma still exists - I have experienced it myself from friends and family members who are in the caring professions and some are more "enlightened" than most. I suffer from recurring depressive disorder and don't want to get into a competition about what the worst sort of MI is (although I know psychosis is far more distressing for the sufferer) but in severe depression when you experience loss of self and are a quaking, shaking mass who can't stop crying, then people are afraid - well they don't get to see me (only DP) because I won't let anyone see me in this state - I experience it as a loss of self - and NO people don't understand.

AND YES - very often I am too scared to get out of bed and can't contemplate walking across the landing and getting in the shower. It's a torment for sure. Meds are very "trial and error" and I've never found anything that gives me lasting relief. But Foxyspook to suffer from the age of 9 - is absolutely horrendous. Your childhood was stolen as is your adulthood.

I don't know what MIND do - not a lot I think, or RE-THINK and there's another I can't recall. I suppose in 100 years time the malfunction of the brain will be understood and a cure will be at hand and people will simply wonder how we coped.

[NightTerrier]

ChangingNamesAgain, personality disorders are even stigmatised by people who work in Mental Health. I've heard stories about people being discriminated against by CMHT because of it. Then there is the general perception of it. I think it's a similar problem with psychosis though. Personality disorders are often mentioned in conjunction with violent offenses.

Although, I've met a couple of people that were really open about having BPD. They both had really awful childhoods. I don't think it's fair that they then grow up with problems and then get a rough deal with the people who are employed to treat MI.

[BeckerLleytonNever]

I hate that you are seen as weak if you have anxiety etc too, actually you have to be strong to even get out of bed sometimes

^^ BRILLIANT line there. spot on.

[BeckerLleytonNever]

thing is, when someone hears the word 'mental', they immediately (in my experience) conjure up images/stigmas of :

people saying they've been abducted by aliens/hear voices/they're the second coming/they see flying pigs/they take frozen chickens for a walk etc etc.

in many peoples eyes Mental means mad/potty/deranged/lost it completely/king George III/should be in a straight jacket in a room with padded walls/bedlam hospital etc.

they don't understand you can be a normal person, not mad, yet have depression/anxiety problems and the like.

As soon as you say you have MHPs that's it. they look at you like you've grown 2 heads, atsrt speaking to you like your a baby, ive had this happen to me, and that's why im reluctant to talok about it.

Aslo, im a fulltime carer for my disabled DC,Im not mad, I cope very well with her, considering, yet Im scared the so called 'experts' and 'services' are going to think I cant look after my own child.

im well aware of my limitations and have asked for help if andf when I need it, but I cant tell anyone IRL all this.

that's why theres atill such stigma and judging.

[LittleMissUpset]

I have suffered for years from mental health problems, and sadly there is still a bit stigma about it.

I have anxiety, depression, OCD and suffer from panic attacks.

For years I've struggled with depression but because it's been minimized, and people have told me to 'just stop worrying' and other helpful phrases, I've not realized how bad it was.

I've started anti depressants this year after almost having a breakdown, but even they aren't a magic cure. People think because I've started on them that over night I'm going to suddenly be cured!

I'm able to function now, and feel more myself, but I still have bad days/weeks.

I'm lucky I have found a good GP at the moment who I can talk too.

But even with counseling it's limited to what you are offered, and that's only for a short time. I would so much better with regular long term counseling but I can't afford it.

I hate that you are seen as weak if you have anxiety etc too, actually you have to be strong to even get out of bed sometimes.

I don't think there is a simple answer unfortunately.

[loofa]

Speaking as someone who (so far) has not had any mh isues, I would say that coverage and awareness of mental health has increased hugely in the past few years. And it feels like the stigma is definitely decreasing. Perhaps the perception is different when you are directly affected.

[Graphista]

Mind don't even operate in Scotland (irks me they call themselves a uk charity).

[Graphista]

Regarding non pharmaceutical treatments:

They're subjective

It's hard to 'prove' a treatment 'world' as what works for one person with that illness doesn't necessarily work for another (try telling THAT to current professionals regarding the cbt fanaticism in my experience though).