Posted: Friday 12 August 2011
Mental health hospitals serve around 100,000 people a year, yet despite treating a significant number of our society, for most people they remain a great unknown. We know they are there, but don’t know what happens there; they have an interlude in the media spotlight when there are failings or scandals, and then return to anonymity, a silent presence in the lives of our communities.
Whether you have been in hospital or not, you will already know that public perceptions of mental health hospitals come with a whole load of baggage, largely informed by One Flew Over the Cuckoo’s nest, one-off news stories and fictional representations in TV dramas.
For all the popularity of the ‘mental health asylum’ in our story telling traditions, little is spoken about their day to day reality. For storytellers, they are full of horror and intrigue; for their audience, it’s a chance to glimpse behind the curtain of one of life’s largely hidden experiences. Whether in fact or fiction, people who use mental health hospitals are always the Observed, and rarely the Observer. Rarely do they get the chance to turn the tables, and comment on what it’s like for them.
The very hidden-ness of life in mental health hospitals is one of the things that makes it difficult to hold it to account. With a public that has limited access to accurate information on hospitals, arguably widespread pressure to change conditions will likewise be limited. In the autumn, Mind will be launching a new campaign on crisis care, and we have spent the last year asking people for their opinions and experiences of all aspects of the crisis system, and gathering your voices on what needs to change.
We know from what people have told us that crisis teams and hospitals can be left to solve the failings of elsewhere in the system, where delays in access to treatments and poor services have left people vulnerable and deteriorating. We’ve been told that for some people, crisis care is the pinnacle of these failings – a medley of atrocities and oversights – while for others, the sensitivity of staff and intelligent compassion have produced the support people need to recover. The extreme variation in experience alone is a cause for alarm.
Whatever your experience, positive or negative, as a service user, family member, or mental heath professional, Mind’s campaign is based around presenting the true story of crisis care from your perspective, and advocating for changes that will bring the system closer to delivering the things people need in a crisis.
Now that we’ve had your views for our policy-making work, we’re looking for people who are happy to speak out about their experiences in the media – to tell their stories themselves, and help lift the veil surrounding acute and crisis care.
If you have experience of using crisis care or delivering these services, and would be happy to share your story with the media, we want to hear from you!
Update: Thursday 18 August
Thank you to all of you who have shared your experience of mental health crisis care services with us in the last week. We have been inundated with a range of stories, and will be in touch with each of you in the coming week.
~ Julia
Julia Lamb, Mind Senior Media Officer
The (drug induced) quick fix mentality in the mental health system has to end. The doctors are there to find a drug for you to be forced to take, that will enable them to tick boxes on a form to show that they have done their duty. The doctors don't care about you, and don't believe that the medication will cure or even help in most cases.
After a relationship breakdown I broke down myself. Found myself howling like a wounded animal in the middle of the night. Could not function at all any more had suicidal thoughts (though told them I didn't think I would ever do it) and needed support. My GP referred me to the local psych assessment team. Had a phone call from them two days later to assess me, told them I felt I was in desperate need of help and they gave me an appointment in 6 weeks time! Still waiting. I realise there are probably more urgent cases than me but this is just not good enough.
Crisis mental health helplines that are linked to psychiatric hospitals are another problem. Once I had to ring 21 times to get through! And usually I could not get through at all. It's all very well for the psychiatric nurse to say "call anytime you need us" - but the reality is very different.
I had a breakdown about a year ago i found the system makes the crisis a lot worse even to the point of putting people off seeking help. Once i got referred and i finally see the crisis teams they were some of the best people i have ever meet. I feel the management and government are to blame for the failings.The doctors and nurses on the front line work tirelessly for you, even when they are under enormous pressure.
The out of hours services are not very good were i live, they assume people with mental health problems only experience problems between 9-5pm!!.
Cuckoo's Nest remains a classic for me because my grandmother experienced ECT without a general anesthetic and insulin coma "treatment" in the 50's, thankfully they never did the prefrontal leucotomy on her. What was also pertinent about the film [as is Ken Loach's 'Family Life' and even Hollywood's 'Frances'] are the observations on social control, being made to fit, and the everyday emotional brutality. Those observations are as true now as they were in the films of the 70's and 80's. Over time, control and emotional disregard are practised differently but it's variations of the same thing, and this is not to acknowledge the very decent staff struggling to work within a mental health system which is as bad for them as it is for service users [those who remain and try do so risking their own health]. Acute units are more crampt and brightly lit than the old style asylums with little space to walk or find privacy. Crisis services are now the gate keepers of access to admission and can go against the wishes of A&E consultants and GP's, they hold a lot of power now. 'Danger to self' appears to count for little, there are countless examples online from users and their relatives of being phoning the crisis service and begging for support and not getting it, which is not helped by services being slashed in half. There are some very sad cases of people being taken from tops of car parks and spending nights in police cells with no crisis service helps afterwards, ditto ASTI offering nothing with some suicides resulting - the cases are in the public domain. So if you actually want an admission then my advice would be you have to say you want the opposite because you never get what you ask for. Otherwise all many crisis services appear to be doing are offering a doorstep medication service - frankly a courier could do that, why does it need a nurse? Crisis and ASTI services are building up a pretty dire reputation and that's not only about cuts to services...
...it's also about ideology. Mental health services have shifted to a in-out asap - diagnose, put into a care cluster with fixed treatments [drugs and or varients of CBT] then out as quickly as possible. The Quick Fix approach in all mental health care is having a dire impact on people's ability to truly manage their difficulties, because there isn't time to even make sense of it!
From what I'm seeing of acute units now, it's the same old thing - nurses not engaging with users, people just being warehoused for a period of time with more people being detained for being a danger or nuisance to others rather than for being a danger to self. We risk acute services becoming more 'forensic' and more people are being discharged back to GP's or Depot Clinics are viewed as an acceptable sum total of a persons support [with an annual medication review with the consultant]. Illness [depression, psychosis, Bipolar] has clear priority, anyone viewed as within 'PD spectrum' has no chance, care coordinators are clearly telling people with a PD tag that they are not 'really ill' like their other patients. I wouldn't wish acute care on my worst enemy, it's depressing just to visit, and more medical model than ever before. What deeply saddens me is that the voluntary sector [user led services, not the mega charities] have been decimated, so some of the best crisis services [Leeds, BCSW helpline] have now gone because they've lost their funding, and these are the services which people WANT. As for statutory sector "crisis houses" they are the biggest joke ever as mini bins allegedly operating on the "recovery model", sometimes they are staffed by graduates in training who are doing OT and calling that recovery.
I had a breakdown and was taken away from my home in an ambulance, I don't remember much of it just people telling me to calm down and breathe deeply, had I taken any drugs or alcohol (no) etc. I was taken to a hospital and given the once-over by the doctor, then I waited a few hours to be seen by two psychologists who asked me lots of questions. Very blunt and up front questions, like did I suffer any sexual abuse as a child, things like that. They referred me to the psychiatric unit, it was all going well. Then they noticed from my forms that I lived outside the zone to be eligible for help from their hospital, that I should've been sent to another hospital. On this realisation I was told, in my darkest and most desperate hour, that there was nothing they could do, because the paramedics had for some reason taken me to the wrong place. I was sent home that night, from a hospital miles from my home. We had no money at the time, literally nothing. We walked about ten miles to get home from there at about 3am. My boyfriend carried me some of the way because I kept crying and breaking down. What kind of support is that? I understand some people have had a great deal of help from the NHS but personally I have been thrown to & fro, treated like I don't matter. Its over a year since the hospital I was admitted to at first said they would refer me to the hospital in my area, but I never heard anything from them, not a peep. I have since had to move home due to financial issues where I have to see a doctor who doesnt seem to register the seriousness of my mental illness. I have become more and more withdrawn from 'life', I haven't seen my friends in years and most of them have taken this personally. Its a lonely road.
@Jennifer,
Your experience is heartbreaking to read. I'm so sorry to hear what you've had to go through. I'm glad you've got a supportive boyfriend, but it sounds like you could do with a lot more professional help than you've received in the recent past.
I really recommend you email or call our information line for some guidance on how to make sure you get that referral to your local hospital, as well as other options available to you, and other mental health services in your area. Contact details for the info line are here > http://www.mind.org.uk/help/advice_lines#contact
Thanks for sharing your story on here.
Take good care,
Anna
Does ANYONE care? Can ANYONE offer anything positive for us? I'm tired of this pschological nightmare that is this society. Tired of trying to get work which is nothing to do with recession but everything to do with me being mental. So you hit crisis point and the message seems to be go ahead and kill yourself just as long as you don't hurt anyone else. I NEED a job not constant voluntary work with no pay, constant brick walls thrown in your face, yaer in year out. Being classed a benefit scrounger by the disgusting media and government-is it any wonder that people are desperate? I'm even getting the message that i'm not trying hard enough, sick of it, maybe a bill board in town with 'nutter wants work' ANY work. We are treated as subhuman and i'm sick and tired of the whole thing.
I share your feelings Linda, half the country hates people who use services and/or are in receipt of benefits but cuts to welfare and services mean no support and more threats. Then employers don't want people with psych history, all the while people who have never done minimum wage work & have always worked in jobs with good conditions and sick pay go on about the wonders of; Access to Work [basic literacy/numeracy and stuff all else], being self-employed [most stressful position to be in], social enterprises [er where?], reasonable adjustments, working from home, graded returns, none of which apply to the industries the undesirable candidates will be pushed into. Then 'slivers of time' working for Tesco's for 2 hours - presumably on temp contracts and the money made up to JSA £65 a week. None of the high profile people have done this nor would they.
Hi Linda,
Sorry that you're feeling so frustrated, I know many people feel the same way as you and it shows how much more work there is to do the challenge the stigma of mental health.
We care: there are organisations out there to support you, and if you’re able I suggest you email or call our information line to find services and support you might not already know about in your area. Remember, you can call or email the Samaritans 24/7 to talk about how you’re feeling. Call them on 08457 909090 or email jo@samaritans.org
We are campaigning hard for fair access to benefits for people with mental health problems who are unable to work, including unhelpful language used in the media (labelling people ‘scroungers’ and so on). Find out more about our welfare campaign at http://www.mind.org.uk/welfare
If you’re interested in getting involved in the campaign and making your voice heard, do drop an email to Vicki in our campaigns team, at action@mind.org.uk
Best wishes,
Richard from Mind
Council of management now has one of the most prominent pro-welfare reform speakers as a member
PLEASE tell me that's not true!
How can Mind be campaigning to help us when people with the complete opposite agenda are on the council of management??
Well I don't know for certain but someone told me that Rachel Perkins has joined council of management and from the articles I've read in the Guardian where she has been interviewed she said she broadly supported welfare reform such as the tapering, limits on benefits and that anyone can work with the right support.
If I'm inaccurate Mind please correct me
Hi Mindreader and Bernard,
Yes Rachel Perkins has joined the Council of Management, and she is outspoken on a number of issues in mental health. Individually, members of the Council of Management have a range of views and perspectives, and some of these may not always be in keeping with Mind’s general position.
It's important to remember though that all our trustees have the responsibility to act collectively in the best interests of our members and in keeping with Mind’s mission and values.
As an organisation we believe that people with mental health problems should be offered fair welfare support if they are unable to work, and supported to return to work at a time and pace that suits them, that takes into account the complexity of living with a mental health problem. We do not support the use of sanctions in encouraging people to return to work.
Here's a link to the Guardian article in case other readers are interested - http://www.guardian.co.uk/society/2010/aug/25/mental-health-treatment-rachel-perkins-mind
Also, here's a link to Rachel Perkins' profile on our website - http://www.mind.org.uk/about/our_governance/our_trustees#rachelperkins
Thanks Richard, does Mind have a position on voluntary work as an outcome in between unable to work and being able to work?
Hi Mindreader,
Everyone’s recovery will be different and a person’s return to work, if appropriate, will be different. There is an important role for a gradual and sequential approach for some people who are not confident enough to go straight into paid employment so voluntary work can sometimes be part of a person’s journey back to work. For other people being placed in paid work straight away can be beneficial. Mind also acknowledges that for some people becoming self-employed can help people work flexibly and manage their condition.
Thank you for clarifying that Richard.
So someone who was "commissioned by the Secretary of State for Work and Pensions to lead an independent review into how Government might better support people with mental health problems to gain work and prosper in employment" in 2009 is now in one of the top seats in a charity supposed to be helping to ensure people who can't work are not forced to do so and subsequently lose everything (income, home, life...) because of it.
The review worked well, then...
And still Mind keep up this "we don't believe in sanctions" spiel and fail to see the giant conflict in seeking to provide one of the very services people will face sanctions for not complying with. Saying that sanctions "encourage" people back to work is a bit like ramming a sledgehammer through someone's skull to "encourage" their brain to get more fresh air.
thanks for th at Richard.
I think Rachel P is way off course. Obviously she means well to see it as an inclusion thing. But her views ignore how disabling and paralysing a mental health problem can be. I know people in wheelchairs who can do more than I can!
mental health patients are very very disabled. The chances are if they are able to work that they will tell you. Before sending them to work you need to see that their mental health needs have been attended to. That they are getting the kind of support that they need.
Currently the support that we were getting has been axed. Which means we are actuallly further away from being able to work. And I warn every one that if you continue to dismantle community care you will end up with some very dangerous situations with people who can't cope.
the current agenda was tried out in the victorian era. YOu'd think we had moved on from there. Inclusion is more like how do you include someone who is physically incapacitated. By accepting how they are. Not by thinking they can do the same things as everyone else!
incidentally I wonder if anyone can tell me - if a patient is considered to be getting well enought to work , would the professionals discuss it with him/her before referring them to the jobcentre?
Hi all, please hold off on your welfare discussions until next week when we will have a blog on the issue. Let's keep this discussion focussed on crisis care. Thank you,
That's the thing really Taryn, for those of us affected by welfare reform it hits everything we do. There's no point discussing crisis care or anti-stigma campaigns or books of the year if we're all homeless/starving. Sure Mind have other interests, but it should tell you something that many discussions here end up being on the subject of welfare.
Hi, I have had mostly positive experiences with crisis care (and the great majority of the negatives were down to services themselves being in crisis) - more and more so as I got to know the service and the service got to know me, though I understand that is not helpful for people on their first referral. I did attend the Baker Street interviews where it was nice to be able to share my views.I would like to be able to talk about when a crisis service DOES work to offer some balance but would it be possible to share my stories with the media under a pseudonym? (sorry if that's a ridiculous question)
I just wanted to pass a comment on my local Psychiatric hospital. It is based on a hill out of town, secluded from society. A brand new hospital has been built there which is a flag ship of the area Trust. It is a hospital built and planned for by Architects and Planners. The treatment within is archaic and as a patient sectioned or not one has to conform to the treatment given, sometimes physical and brutal,(FROM PERSONAL EXPERIENCE!) Indeed with my CPN's pressure I have been asked to complete a pre admission statement in which I have asked for no physical restraint by 3 burley male nurses having fun, I do not wish to watch Corrination Street nightly for the benefit of staff, and other social activities I cannot join in because I do not like them or they exacerbate my mental health illness. I do not have the faith that a pre admission statement will be read by staff because ward routine comes first and again I say I will have to conform.
Please have a look at the blog on the Care in Crisis campaign by Pastor Paul who is chairing the inquiry. Comment 1 is mine. Please support him in his sterling work.
Welfare blog next week could get HOT.
Keith
The problem is Taryn is that crisis care and welfare are in many ways inextricably linked now because many people are going into crisis because of losing their support and income along with threats to housing [with changes to housing benefit]. Then they find there is no crisis care.
Richard being self-employed is the most stressful kind of work to take is [as is on-off short term temporary contracts/JSA] because you have to be certain you will be capable of and able to find enough work each month to cover living expenses, and you also need to save up enough to cover your own annual leave and sickness. It's fiercely competitive to be self-employed with more people chasing the same work, then there's doing your own tax/NI, keeping good records, being self-employed means being good at business not just selling whatever a person can do.
Clearly voluntary work has no place as an outcome now, it's only ever a stepping stone to paid work. Problem is, voluntary work is where some people need to remain but it seems those needs are not represented and allowed now, and for others years of voluntary work never actually leads to paid work for those who can progress.
I have been hospitalised about twenty times in my life, mostly under section. "Crisis care" does not help. How does it improve someone's mental health to have the police break their door down and take them off to "hospital" in handcuffs? How does it help someone's mental health to be held down by three or four "nurses" and injected in the backside? How does it help someone's mental health to be told that they have some scary-sounding "illness" which they will have for the rest of their lives and they must take "medication" which makes them feel terrible? The problem is with the legislation which allows "doctors" to perpetrate these human rights abuses in the name of "care".
In my experience where I live there is no care available. The waiting lists are huge - I have noticed that whilst most peope with a PD are waiting for treatment they turn to substance abuse and alchohol. The whole thing gets worse wrecks lives and families - I ve seen a good friend end up the streets.- somehow there is enough grace in this world for people to eventually find a way out - but that has been by being not forced work when they are ill. I am genuinly worried now about people in the future - after these cuts and as for the how the media is going on - mentally ill people are sidelined an no one seems to care enough for them. I wish there was more private - but non profit organisatons that could step up and help. Its a cliche but people just need love time and support in this world to get better. How can it be so hard to provide that? Most nurses genuinely want to help people - Arent their any other countries who have a good service that we could learn from?
I have been admitted to pshyciatric hospital twice the first time i was htere for over a year and the second time i went in voulantry and was then sectioned with no warning. there is a huge lack of communication between all services and between staff worknig in the hospital it is all focoused on keeping you locked up and medicating you and there is no re-itergration from leaving hospital and going back into the community. while being in hospital the staff should be focused on getting you out and helping you set up your life for whene you have left and people need to be doing activities while in hospital and not left to sit. As long as they can tick boxes then as far as evreyone ellse is concerned theyr doing the right job.
when I first asked for help the daycenter was in the middle of town. I used to walk past and think that they would section me if I went in. As the problems grew socially in my life I began to venture in but the first thing I asked was if I was at risk of being sectioned. The person I spoke to explained that its not that easy to do that and gave me a n advocates number if I was worried.
I began to trust them and to ask to see 'the person on duty' who you could go to talk one to one with. The place was teeming with therapists and social workers. After some more time I started to social ise there and although that became a problem later on at the time it was just what I needed.
now the daycenter is further out, up a hill and there is no one to one duty thing. I wonder if It would have engaged with me in its current state.
just also on the subject of working from home. Your home has to be suitable for uose as a workplace. Where I live there are noises and fumes from unpleasant neighbours and it would be bad for my mental health if I didn't get out more to do work or activities outside.
Ive been reading stuff like this elsewhere as well. And have come to feel that its too easy to section people. I used to think it was good if it stops people killing themselves.
but if you weigh that up against the imposition on your liberty. And the risk of having someone wrongly detained. I think that needs rethinking. And we might have to sacrifice the idea of detaining people who are suicidal. And only detain people who are proven to be a risk to others. I don't know how you would prove it , but it should be proved rather than just on someone elses word
I have had various experiences of crisis services and unfortunately not at all positive. The last time when I was in severe mental distress, a few months ago, I went with a colleague to our local A & E department (big London teaching hospital) and waited for over 5 hrs before not even seeing a doctor but being told by an overworked triage nurse that I had no chance of seeing someone. Not the nurses fault. It was only by sheer determination of someone to help me that we found a 'charity respite centre' where I ended up staying short term to have a much needed breathing space. I have also had my fair share of time in hospital wards on a voluntary basis where all I got was medication and no help with the reality of living day to day with a mental health issue. I am so fortunate that I am able to afford to see a private pyschotherapist now who is providing long term help (not NHS 12 week restricted care). Cuts are affecting people living daily with mental health issues - when sometimes we need some help with the practical aspects of living daily with our illnesses, cut services and you loose people through the net. It's taken me over 15 years to access the right kind of help, and what if you don't have the people to advocate for you, support you like I've had ?
Hi all,
In case you haven't seen, we have made a very short poll to help us tell the story of care in crisis.
It only takes a couple of minutes to fill out and will help us to get a clear picture of people's attitudes around crisis care.
Take the poll here - http://www.surveymonkey.com/s/2LLYYMB
Many thanks,
Richard from Mind
I had my first really big crisis earlier this year after a long period of being well and in work actually in mental health. How was I treated, my GP was away so saw a new doctor who basically told me to go home and get an appointment to see my usual doctor! Luckily after I told the receptionist how close I was to going overboard something was done. I wasn't hospitalised and had very good support from my GP practice after that by the GP who knew me and was well aware my asking for help meant I really was unwell.
Crisis was overted and spent 4 weeks off sick to then find Human Resources questioning my ability to work!! I was so sickened by this archaic attitude that I am now looking for alternative employment and this from an organisation that has RECOVERY in it's company mandate. Who actually causes crisis? Often it is no fault of our own but again societys reaction to it. I really understand why people do sound off in here as we are still not listened to by the so called normal people who want to plan mental health services.
I have found support in a crisis not very good, i have a personality disorder and when i have needed support i found it difficult to get infact a few weeks ago i was sectioned under 136 by the police and held in a cell for several hours. i find having a personality disorder means it is difficult to get support from mental health services it seems that to get help from mmental health services you have to have a serious mental health problem such as pschois or bipola. more help needs to be given to people with personality disorders,
I certainly agree with Jackie about the difficulty people with a PD have in accessing services and appropriate treatment. I don't have this but have met many people in my work life who have this diagnosis and always being told no one can help. If any one needs effective crisis care it must be inclusive other wise an aparthied system is put in place.
If any one actually looks at the diagnostic criteria for and PD then it is obvious most peole on the planet have one form or another - it is just another innapropriate label.
Its a label designed to kill us. You get worse of all worlds, still ;mental when it comes to society but not 'ill' when it comes to trying to get help.
Mental health system labels people they don't like with PD while helping those they do like. Forget crisis, you don't have depression anymore just your hideious personality-if you do away with yourself, well its to be expected isn't it?
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