Coming off medication by pWh1aG


									“Thinking About Medication
Rob Allison, Maggie Stronach, Ceri Owen, Ruth Lambley
Aims of presentation

 Brief outline some literature regarding medication

 Describe a ‘Thinking about Medication’ group in York

 Personal experiences related to medication and the
   The dominant approach
 The dominant approach in psychiatry is a biological one
  (Bentall, 2009)

 The main tool for psychosis-related problems is medication
  (Bentall, 2009; Coleman, 2004; NICE, 2009), usually
  prescribed indefinitely (Whitaker, 2004)
The harm done
side effects including neuroleptic
   malignant syndrome,
   Parkinsonian symptoms, tardive
   dyskinesia, blindness, fatal blood
   clots, heat stroke, swollen
   breasts, leaking breasts,
   impotence, obesity, sexual
   dysfunction, blood disorders,
   painful skin rashes, diarrhoea,
   nausea, forgetfulness, seizures,
   diabetes, increased risk of
   suicide, early death

            Lewander, 1994; Keefe et al, 1999;
          Arana, 2000; Kane & Freeman, 1994;
                 Glazer, 2000a; Glazer, 2000b)
The harm done

   MRI studies – antipsychotics cause atrophy of the
    cerebral cortex and an enlargement of the basal ganglia
    (Gur et al, 1998; Chakos et al, 1994; Madsen et al,
    1998) (cited in Whitaker, 2004)

   “the drugs cause changes in the brain associated
    with a worsening of the very symptoms the
    drugs are supposed to alleviate” (Whitaker, 2004,
    The power of belief….. (Kirsch, 2009)
 Expectancy of improvement

 The strong therapeutic response to
  antidepressant medication is almost
  as strong to placebo
 Statistically significant but not clinically meaningful

 “the dirty little secret” – ‘many have long been unimpressed by the
  magnitude of the differences observed between treatments and
  controls, what some of our colleagues refer to as “the dirty little
  secret” in the pharmaceutical literature’ (Hollon, DeRubeis, Shelton &
  Weiss, 2002)
Despite evidence, prescriptions increase!
 Evidence consistently shows that maintaining patients on antipsychotics
  produces poor long-term outcomes and 40% of those diagnosed would do
  better if they were never exposed to them or gradually withdrew from them
  (Whitaker, 2004)

 ‘Maintenance Antipsychotic Therapy: Is the Cure Worse than the Disease?’
  concluded that “an attempt should be made to determine the feasibility of drug
  discontinuance in every patient” (Gardos & Cole, 1977)

 Research since then confirm the wisdom of this advice

 But in spite of this, antipsychotics are been prescribed more and more and to a
  larger group of patients…………….
Medication on the increase
Prescriptions (UK)
1988-2001, issued prescriptions (generally) increased by 56%
1992–2002, issues prescriptions for antidepressants increasing by 243%
                                                                  (NICE, 2004)

1998–2008, 48% increase in prescriptions for antipsychotic medication
                        (Information Centre for Health and Social Care (2008),
                                                     cited in Moncrieff, 2011)

2006–2010, 43% increase in prescriptions for selective serotonin re-uptake
  inhibitors (most commonly prescribed group of anti-depressants) to nearly
  23m a year (NHS Prescription Services)
  12986314 (accessed 7th April, 2011)
Medication for profit?

• The pharmaceutical industry is the most profitable in the world
  (Bentall, 2009, p.197) - global market for antipsychotic
  medication is approx $15 billion per year (Lewis & Lieberman,

• By 2002, the combined profits for the top 10 (of Fortune 500 –
  top 500 highest gross revenues of American public corporations )
  was more than the profits of all the other 490 companies put
  together!! (Law, 2006, cited in Bentall, 2009, p.198)
MIND study
 Several studies indicate non-adherence for medication range from 30-50% (Tacchi &
   Scott, 2005)

 In a MIND study, it was found that 70% of people who were prescribed psychiatric
   medication felt pressured to take it, with a similar proportion also feeling powerless or
   passive about taking them (MIND, 2005)

 18% found the medication to be mainly helpful BUT 21% found them unhelpful, with
   the remaining 71% somewhere in the middle
 60% stopped taking their medication because of the adverse effects
 25% tried to come off their medication against medical advice, with nearly half not
   telling their doctor at all due to fear of opposition
 It was also found that even when doctors were involved, they were not always helpful
Mental health service disengaging from
 The power-imbalance influences the way services are delivered
  and perceived

 Many people experiencing mental distress distance themselves
  from mental health practitioners in order to take control and
  either come off or reduce their medication

 Coleman (2004) reports that it was only after leaving mental
  health services was he was able to feel empowered to take control
  of his own recovery, which he suggests has been a similar
  experience for many others
Mental health service disengaging from
• Rather than discuss with mental health professionals, many people will instead
   attempt to alter their medication and, effectively, take control of their
   medication without the involvement of mental health professionals

• Implies that mental health services struggle to engage with people when they
   most need it

• Implies that mental health services, at times, work against people rather than
   work with people

• This is particularly concerning given the difficulty in reducing psychiatric
   medication and the adverse effects of withdrawal (Moncrieff, 2006)
The way antipsychotic medication is used
 (But) “ the real problem with antipsychotics is not their
  effectiveness, but the way that they are used”
                                             (Bentall, 2009, p.222)

 Moncrieff (2007/2009) - alternative model of drug action,
  “disease-centred model” to a “drug-centred model”

 It is the consequences of being in these altered states that amount
  to the therapeutic effects of the drug (Moncrieff, 2007/2009)
Thinking About Medication Group
 Background: Research has shown that people frequently want more
  information about psychiatric drugs and benefit from the opportunity to talk
  about issues related to them.
 The group is based on a similar group run by Guy Holmes (Clinical
  Psychologist with a special interest in Psychiatric medication) in Shrewsbury,
  and a group run by Rufus may and Adam Jhuragoo in Hebden Bridge called
 Aim: Help people access information about drugs they maybe taking or
  considering. Provide a space to talk through experiences, exchange views and
  give and receive support. Provide access to expertise from other sources. To
  explore pros and cons of taking medication and explore alternative coping
Thinking About Medication Group

 Who’s involved: Two people with experience of taking Psychiatric
  medication, who have been part of the steering group. Rob Allison Mental
  Health Nurse Lecturer, Karen Flowerdew, Consultant Clinical Psychologist,
  Andy Elmslie Consultant Psychiatrist, Sarah Smith Pharmacist and Maggie
  Stronach Mental Health Nurse.

 Pilot run: we ran a pilot in early 2011, planned 12 sessions with timetabled
  agenda, open group, rotating facilitators
Thinking About Medication Group
 Agenda
 Intro’s, suggestions/content for sessions
 Repeat last session, reflection
 Research in different psychiatric medication
 Recovery, relating to medication
 Illicit/non-prescribed drugs
 Psychological therapies & alternatives to medication
 Open session
 Pros & cons of psychiatric medication, withdrawals, etc
 Practical issues related to medication, empowerment
 Complimentary therapies
 Reflections - what have people got from the group?
 Evaluations, plans for future
Thinking About Medication Group
 What did people want from the group?
 We provided self-help materials, some brought different information to the
    group, some wanted to come off their medication, some wanted information
    about side effects, some talked about how much they valued their medication,
    some wanted support and advice regarding how they could talk to their
    psychiatrist regarding their medication and have more influence over their
    prescribing, some wanted tips about how to safely reduce their medication
   What worked well and not so well?
   Good initial turnout. Better advertising hence the conference.
   Worked better when less structured sessions.
   Constant rotating of facilitators confusing, feel would work better with couple
    core facilitators, allow more flow between sessions.
Thinking About Medication Group
 Future plans:
 Conference on 2/3/2012 with speakers including, Phil
  Thomas, Rachel Waddingham, Guy Holmes
 Group to restart at Sycamore House from Weds 14th
  march 2012, and every Wednesday, self referral, group
  open to all who take or considering taking psychiatric
‘Patients (and carers
if appropriate)
should be informed
of the benefits and
side-effects profiles
of antipsychotics
and be involved in
the choice of
antipsychotic’ –
NICE schizophrenia
An illustration of
my feelings about
being given
when I’d asked
for something ‘not
sedating so I can
keep up with my
Side effects a
even more
frightening w
you can’t
anticipate the
and don’t
understand w
Having conce
dismissed is
                          Flickr / Kheel Centre

Whose data? OUR DATA!

Patient decision aids – because informed consent is important.

 A Thinking About Psychiatric
         Medication Conference
                              Friday 2 March 2012
                           Friends Meeting House
                   Lower Friargate, YORK YO1 9RL

What are the different perspectives on what psychiatric medication does?
How can people make informed decisions about medication use?
Thinking about medication groups – how are they helpful?
How can professionals and others support those who take medication?

An opportunity for Professionals, Carers and those who take psychiatric
medication to participate in a day exploring developments in the area of
psychiatric medication.
It will also be a chance to find out more about the launch of our “Thinking
About Medication Self Help Group”.

 For more information on how to sign up please contact Linda Catt
         on 01904 725642. Alternatively, send an email to

      The conference is free of charge but registration is required as places are limited.
                                   Lunch is not provided.

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