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Guest blog from Rethink chief executive Paul Jenkins on Schizophrenia Commission Report
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14 November 2012
Slowly, progress is being made on the mental health front. The government has committed to parity of treatment between mental and physical illnesses. Ed Miliband made an important speech recently making clear the need for government and society to change its attitudes to mental illness, not least because of the social and economic costs of failing to do so.
A lot of this echoes the work of Time to Change and the mental health charities MIND and Rethink Mental Illness, who welcome these steps in the right direction, but know how far off we are from the vision being set out by both main parties.
Today sees the publication of the report from The Schizophrenia Commission and this guest blog on the subject comes from one its members, Rethink Mental Illness' chief executive Paul Jenkins.
Imagine being diagnosed with an illness for which there is no cure. The best drugs available were developed in the 1960s and haven’t vastly improved since then. Your medication makes you rapidly gain weight and doubles your chances of getting heart disease. You have about a 10% chance of getting all the treatments NICE believes you should have access to. If you have to go into hospital, you may be unlucky enough to be treated in units where you don’t feel safe and where staff are burnt out and demoralized. On top of all this, you are shunned by society and treated with suspicion and fear by many.
If the illness we were talking about here was cancer or Alzheimer’s, there would be a national outcry. Because the illness is schizophrenia, there simply isn’t. People with schizophrenia and their families have quietly had to endure substandard care and treatment for too long. None of us should accept this.
It doesn’t have to be this way. For the last year, I have been part of The Schizophrenia Commission , an inquiry into the state of care for people with schizophrenia and what needs to change. Our report, ‘The abandoned illness’ published today, sets out what could be done to transform the lives of everyone affected.
The cost of schizophrenia to society is £11.8 billion a year and there is no doubt that would be significantly less if did more to support more people to recover. What we currently spend on services is not always spent in the right place. For instance, nearly 20% of the whole NHS mental health budget is spent on secure care, driven by an obsession with risk, when some of those resources could be better spent on improving community support.
While it may take years for better medication to be developed, the drugs we do have could be used more effectively if they were prescribed properly. If health professionals knew more about how mental illness puts your physical health at risk and carried out extra basic monitoring, such as blood pressure checks, they could cut the number of people with schizophrenia dying from preventable physical illness. There are services across the country showing the way on what can be done, but they need to become the norm in every part of the country.
Part of the problem is that it’s easy to think; this doesn’t affect me. Mental illness and schizophrenia in particular is something we often think happens to other people. To different people, not people like us. That’s how one of the members of my charity, Rethink Mental Illness , told me recently she had always felt about schizophrenia. With no history of mental illness in the family and a bright, popular son at university, she had no reason to think schizophrenia would ever play a part in her life or that the poor standards of care would ever impact on her family. That was until Christmas 1996, when her son woke up one morning, convinced she was dead. He was suffering from an acute psychotic episode and has needed support and care ever since.
Schizophrenia and psychosis can affect anyone, from any background at any age. Over 220,000 people in England have a diagnosis of schizophrenia and many more thousands care for someone who does. Schizophrenia is everybody’s business and we all have a duty to stand up and say – this isn’t good enough.
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There is a vital stepping-stone missing, both from the Government’s ‘welfare to work’ programme and from the transition for people with schizophrenia from hospital into a restitution in the community. This stone is the therapeutic support and meaningful activity that provides a transition and enables patients to engage fully with the nature of their diagnostic symptoms and restore their balance after what is a very disabling loss of reliability of their senses during psychotic episodes.Another missing ingredient is the acceptance and inclusion of the wider public of people with this condition, when Employers continue to flout clear legislation forbidding exclusion of people with MH experiences and people blocking pathways to progress for these people need to reconsider their position. Equality of opportunity needs to mean just that and a level playing-field that enables all to participate within our capacity.
Committing sufferers to secure units results less from an obsession with risk and more from sheer laziness. Medical staff prefer to sit around in meetings discussing patients in theory than to actually interact with them in any meaningful way, let alone go out into the community and treat people at home. Secure units are used for containment of the homeless, the persecuted and often the simply lonely and the patients are mostly much more of a support to one another than the professionals ever are to them. Of course there are stressed-out, otherwise caring workers but there are also many contemptuous, cruel and incompetent ones who take out their frustrations on the afflicted and abuse their power in many ways. Drugs are administered without consent and with little monitoring or indeed method and are mainly used to ensure a lack of rebellion or complaint. The entire system constitutes a scandal and the biggest irony might be that some of the most brilliant minds, the most individual thinkers and the most open and loving of people are condemned to have their minds broken and their lives ruined by what amounts to little more than oppression of something because it is not understood.
Only going on personal experiences, with ones that suffer it, and I have to say, doc told me, have been borderline, but, do stress especially when young sort of cause it, on top of family mind weakness traits, especially with their self-denial, as if it tops up through generations, until a certain generation can’t take it – like a line of neurotic parents until something gives?
I must say, had really peculiar experiences with my parents, but what made it worse was them getting up the next morning as if nothing has happened. Ask, but get answered by denial.
But there we go, crosses we have to bear, until…
I agree with what you say here. I’ve experienced the indifference of nursing staff and felt lonely and isolated when an inpatient in an acute ward. Indeed my recovery was quicker when I was at home in familiar surroundings where I was not ignored. Schizophrenia is not understood and I welcome the new report. Excellent blog post. Thank you.
and recovery from a psychotic episode can be hampered by the devastating loss of confidence that this experience causes..this is not always recognised, understood or dealt with by the medical profession. So yes therapeutic support is vital
Excellent guest blog from Paul Jenkins – thank you. This ground breaking report is long over due and is now a vital stepping stone in the process of understanding and acceptance and providing the help that is urgently needed
Furthermore, have to say, being borderline is not at all a bad thing – that is the secret of creative people, for instance. As if a form of built in lateral think is included in ones psyche.
The main thing is to very early accept it, educate yourself about it, and use it. So what if some people think you are well peculiar – it takes all sorts to make a World up after all. Main thing is to try and not let it bother you yourself. But things can tend to go awry, of course, crisii do occur for some, no matter what, which is the difficult part of it all.
Link,
http://en.wikipedia.org/wiki/Borderline_personality_disorder
My experiences in hospital were horrendous; I was lonely, isolated, bullied by staff, given frightening and debilitating treatments (heavy drugs and ECT). This was a long time ago but people have similar experiences today. Clearly, an environment such as the hospital ward that I experienced was a dangerous and distressing place to be. I was then sent home having shown ‘no improvement’, and the problem with this was that this meant returning to an abusive, dysfunctional family environment, which also was no help.
I think we’re getting something badly wrong. Often people who get a schizophrenia diagnosis do not have a medical illness (though they might become medically ill due to the treatment). Their so-called ‘symptoms’ are often a quite ‘normal’ response to ‘abnormal’ circumstances that have
caused psycho/social problems. The validity of the ‘schizophrenia’ label needs questioning. Perhaps this diagnosis needs abandoning altogether, and only then can we move forward with humane and insightful attitudes
and ways of helping.
Bugger it, a melancholic song for the melancholic ladies in our life, from Anna from Sveigne, who struggles with upstairs in herself, no matter if she is financially doing alright, from past,
http://www.youtube.com/watch?v=92cwKCU8Z5c
It is ok to come out and say if you do not understand something. It is not ok to perpetrate false perspectives which denigrate and worsen the plight of people unfortunate enough to have been visited by this curse
This has been a long time coming. A huge grateful thanks to Rethink
Mental Illness for launching the Schizophrenia Commission and
highlighting the failings in ‘the ‘system’. We need a total paradigm
shift in the way mental illness is treated. So often psychotic episodes
are triggered by a traumatic event which, if approached with compassion,
will be just that – episodic. Instead, patients are put on
antipsychotics for life and labelled disabled.
“there are many medicines and therapies that can treat some of the most serious symptoms.”
‘Therapies’ perhaps, but medications? Statistics show that only 35% of
patients have symptoms alleviated by antipsychotic drugs. And the
others? Well – they will be given what is regarded as the ‘gold
standard’ treatment – clozapine. Unfortunately only 60% of patients
respond to this drug. So what then for those who remain?
There are
many physical causes of psychosis which should be explored first [Best
Practice BMJ] before condemning a patient to a lifetime of disabling,
life shortening medication. I can’t help but wonder what on earth is thbe use of having Mental Health NICE Guidelines if you only have a 10% chance of accessing the treatments they recommend?
Here’s hoping the Royal College take note.
Apologies, I did generalise a bit, but I was maybe trying to be the devil’s advocate, to stir some thinking on the matter. Have had family members that have struggled, and no doubt many aquaintances of mine would say I am not a full shilling, as they do. Apologies again.
And oh yes, worked for over two years as a hospital porter at a psychiatric hospital when young, and it was terrible and heartbreaking to see people struggle.
Sorry, that post was a bit flippant. Bit generalising, here is what I was trying to say, as here,
http://mental-health-videos.bafree.net/watch-video/4j0TRmHX6PM/197holger/agnetha-f%C3%A4ltskog-love-me-with-all-your-heart.html
and,
http://abbamikory.blogs.com/abbamikory/2005/06/agnethas_breakd.html
I agree with you Jean – I think the term schizophrenia could be done away with and the term “psychosis” used in its place. I am really sorry you had those horrendous experiences in hospital (I can relate to these very well) and after care is absolutely crucial and often falls short of the required standard. Yes, very often, mental illness results when the pain and trauma become too much to bear; but warehousing people in hospital and over medicating them is not the answer. As this report demonstrates a comprehensive overhaul is long overdue
and humane and insightful attitudes are the way forward as you say
Blaming all the poor services, all the stigma and all the undervaluing of human potential of people with this diagnosis on a word is unconvincing and here, not even adequately argued. I have a layman’s term descriptive of the symptoms which is ‘Detachment disorder’ – but Really, changing a word achieves nothing for people with this condition – Nothing at all! No one, not even this writer really looks behind the diagnosis or the accompanying disability. To spell it out, when your symptoms consist of auditory and visual hallucinations – let me surprise you – it is Impossible to trust your senses with any reliability, which is worse than not having those senses at all. All our signals are illusory and unreliable. That is the disability – not a germanic term which no one from nordic countries finds in the least bit offensive! So the need is to wise up to some realities and not hide behind unbacked, unreasoned assertions. My disability is Real not Notional. My need is not to be harrassed by people with the same condition as me with irrelevancies like this.
Blaming all the poor services, all the stigma and
all the undervaluing of human potential of people with this diagnosis on a word
is unconvincing and here, not even adequately argued. I have a layman’s term
descriptive of the symptoms which is ‘Detachment disorder’ – but Really,
changing a word achieves nothing for people with this condition – Nothing at
all! No one, not even this writer really
looks behind the diagnosis or the accompanying disability. To spell it out, when your symptoms consist
of auditory and visual hallucinations – let me surprise you – it is Impossible
to trust your senses with any reliability, which is worse than not having those
senses at all. All our signals are
illusory and unreliable. That is the
disability – not a germanic term which no one from nordic countries finds in
the least bit offensive! I think you need to wise up to some realities and not hide behind
unbacked, unreasoned assertions. My
disability is Real not Notional. My need
is not to be harrassed by people with the same condition as me with
irrelevancies like this.
Another missing ingredient is the acceptance and inclusion of
the wider public of people with this condition, when Employers continue to flout clear legislation forbidding exclusion of people with MH experiences and people blocking pathways to progress for these people need to reconsider their position. Equality of opportunity needs to mean just that and a level playing-field that enables all to participate within our capacity.
Vote here to call time on failed government policies…
http://epetitions.direct.gov.uk/petitions/42276
Why is there never any progress in Mental Health treatment?
I believe in “mad in america-book” describing mental health professionals as the Mad Doctors. I don’t blame them as they are stuck in the same environment as their patients. But surely when some of them are enlightened enough for progress, they shouldnt be blocked by the no chasnge Brigade
my bro on clozapine ..that shit ultimate sick drugs ..
in past i adviced him not to take ,then know later ,those shit withdrawal effect is worst then not ever taken …. now that shit hospital …know my past history/black record of advising my bro of not taking that drug …. then refuse to let him go home ..afraid of me … even however i guarantee i would give him .. coz i know those shit effect….god bless everybody;(
I hope you care because I’m going to try. A little story. A psychiatrist cured me of OCD, I didn’t follow through and he later died. This is what I’ve learned. You train the subconscious to give up it’s secret’s by reading the reoccurring, repetitive, predictable thought pattern aloud word for word in brief word groups as the patient free associates. Spread it out over the course of three and a half months, till the patient acts out he repressed experience and relates them to the therapist, Get the patient to face them so the therapist can reverse them. Make sure the patient follows through with the therapy or the patient could end up in worse shape like me. I swear dead childhood pets are a primary cause of repression.