Wednesday, 21 August 2013

The Drugs Don't Work and Bipolar Disorder is the Proof

I've been listening a lot recently to the Verve classic 'The drugs don't work' from their 1997 Urban Hymns album: "Now the drugs don't work, They just make you worse, But I know I'll see your face again".  And relating it to my family's experience of psychiatric drugs for so-called mental illness, the manic rise in bipolar disorder and the anti-depressant drug prescribing of the gatekeeper GPs.  The world appears to be going mad in its efforts to hold back the tide of human distress by pharmaceutical means. 

Phil Barker and Poppy Buchanan-Barker, in their February 2011 article 'The rise in bipolar disorder is a myth', write: "many people – both lay and professional – believe it exists and as a result it exercises great symbolic power over and within people’s lives".  This rings true for me and I think is tied up with the belief in the biomedical model of mental illness and in the psychiatric system's perceived power to control the mad in our society.  I never believed it, didn't accept the psychiatric labels after psychotic experiences, and being overtaken by psychiatric drugs, and therefore it seemed that to take back control and break free was the only way ahead.

However I don't think it's the whole story.  Because the drugs don't work we may be put on cocktails of anti-psychotics, anti-depressants and mood stabilisers, with benzos thrown in.  This can cause havoc with our state of mind, in my experience.  And in reality isn't anti anything.  In 2002 it sent me on a downward spiral of low mood and flatness.  Deprived of my usual decision-making abilities and assertiveness I had moments of despair, something I wasn't used to, being an upbeat person.  Every meeting with the psychiatrist was unhelpful with questions about my mood, flat as usual, and sent away with no hope but to come back in six weeks time for more of the same. 

No longer than a year on psych drugs was my mantra in 1978 and 1984, after puerperal psychotic episodes and forced to go on chlorpromazine.  The cocktail of drugs in 2002 was more difficult to resist and I nearly went under.  Thanks to family, natural resilience and faith, I survived and escaped.  Other family members have chosen to work with or remain in the system, accepting the bipolar or schizoaffective disorder labels and disability.  I think that's the pay off.  It's up to each of us to consider the options.  Weigh up the consequences.  

For I consider it's the system and the pharmaceutical drugs that combine to make bipolar disorder a reality.  The mental distress and emotional crisis could be therapeutically treated with listening, relationships, respite and, most of all, choices and alternatives, to coercive drug treatment and the use of restraint and seclusion.  People could opt in to compulsion if that was their wont whereas those of us who don't like to be forced or compelled, and just need time out, could go for some rest and relaxation where our equilibrium has a chance of being restored.

It was the trauma of childbirth that first propelled me into the psychiatric system, where I was doubly traumatised by the grabbing and jagging, separation from my baby, being made to conform, then having to get off the psychiatric drugs.  A do-it-yourself task against the advice of psychiatrists.  It doesn't make sense for mental health care to be like a double whammy.  Why should we be punished for feeling pain and giving voice to it?  Silencing us with drugs and shocks isn't fair.  I say, help us to work through our pain and come out the other end clear of mind and ready for risk-taking.  Don't infantilise us.

I know what it's been like for family members who stayed on the psych drugs, had to have them changed when physical problems reared up, like seizures when sleeping or extreme agitation when awake.  Others have lived with restricted walking, inner ear balance issues, tinnitus, anxiety, mood swings, depression, lack of motivation, appetite changes, blood pressure fluctuations.  Labelled with severe and enduring mental illness, at the same time disabled by the treatment.  Given a disorder label when detained, to justify the restriction of freedom and the rapid tranquilisation. 

Bipolar disorder is what you make it. Roll up! Roll up!  Leave your wits at the door and put your money on the ringmaster.  The merry-go-round of psychiatric drug treatment, the rollercoaster of life in the age of big pharma and the wonder wheel of "what's your next diagnosis going to be?".  It requires resilience, unpredictability and pigheadedness to leave the funfair behind so as not to become a sideshow or caged wild animal.  Do what you can to be in control even when it seems like the opposite is true.

Tuesday, 20 August 2013

therapies and Stratheden (hospital) - an oxymoron?

[from Stratheden Hospital blog]

Oxymoron: a rhetorical device or figure of speech in which contradictory or opposite words or concepts are combined for effect eg “cruel kindness” or “to make haste slowly” 

I remember back in 2010 meeting with heads of psychological and occupational therapies at NHS Fife, to discuss the lack of such therapies when my son was a patient in the Lomond acute ward that summer.  In fact patients were prone to walking up and down the wards, or even round in circles, for therapeutic exercise.  Patio activity could be picking up the cigarette butts.

These meetings seemed to be a waste of time, looking back, as they didn't bring about any changes in the wards.  This was obvious in Feb/Mar 2012 when my son again found himself an inpatient of Lomond then the IPCU.  Read more of this in my blogs written at the time on Mad in America January to September 2012 and later that year in Chrys Muirhead Associates.

The voices of patients, service users and carers in Fife are not as important as the opinions of staff working in Stratheden and NHS Fife mental health services.  I call it staff-centred rather than person-centred treatment.  Keeping people in jobs and doing what they like with public monies.  I think they get away with it because the customers are deemed to be mentally illWithout capacity

I'm not sure what it will take for managers at Stratheden to make real changes in psychiatric services so that patients and their carers receive the benefits.  I want to see a choice of therapies on offer in the wards at Stratheden.  Not just drug therapy.  For some of us drugs are not therapeutic, in fact they make us depressed, anxious, lack confidence and have far less quality of life.

I say to the clinical managers and their allied health professionals that they should listen to their customers, the patients, service users and carers.  We are the ones with lived experience, who have survived, come through it, out the other end.  Without us you wouldn't have a job.  So give us the respect that's due.

Thursday, 8 August 2013

'buyer beware' if commenting on SRN news items

Yesterday I put a comment on the Scottish Recovery Network website in response to their news item on 'Peer support worker opportunities'.  

I didn't take a copy of what I wrote but the gist of it was to do with the low pay on the SAMH post, £12K start and the expectation of having to do evenings, weekends, overnights.  I also mentioned the Lanarkshire Links PSW post at £16K starting pay, a better rate but still not a lot for people with 'lived experience' who are required to share their personal stories and have to work in clinical settings.  

I noticed that my comment hadn't gone up by this afternoon so I Emailed the communications officer at SRN, copying it to others, asking if it was going up.  No answer, so I phoned and was told that 3 SRN staff were on holiday, including the person who usually moderates the comments, and this was the reason for the delay.

However not long after I got an Email from Simon Bradstreet, SRN Director, to say that he'd not put my comment up but had sent it on to a SAMH manager.  Without letting me know or asking my permission.  I was taken aback.  If I'd wanted to send a comment to SAMH then I would have done so myself.

I write blogs and people comment on them, from time to time.  I moderate the comments, decide if they should go up or not, if not then that's that.   I wouldn't pass on a person's comment to anyone else.  Making decisions on their behalf. 

Therefore my advice to anyone thinking of commenting on SRN is to beware.  You will lose ownership of your comment and who knows where it might end up?  They have your contact details, your name, and they obviously think they have the authority to decide what to do with your words and opinions without as much as a by your leave.  

It smacks of psychiatric system thinking to me.