“Thinking About Medication Group” Rob Allison, Maggie Stronach, Ceri Owen, Ruth Lambley

1. “Thinking About Medication Group”Rob Allison, Maggie Stronach, Ceri Owen, Ruth Lambley

2. Aims of presentation • Brief outline some literature regarding medication • Describe a ‘Thinking about Medication’ group in York • Personal experiences related to medication and the group

3. Disclaimer….!!!

4. Disclaimer….!!!

5. 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)

6. 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)

7. 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, p.8)

8. 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)

9. 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…………….

10. 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) http://www.bbc.co.uk/news/health-12986314 (accessed 7th April, 2011)

11. 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, 2008) • 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)

12. 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

13. Mental health service disengaging from people • 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

14. Mental health service disengaging from people • 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)

15. 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)

17. 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 Coming-Off.com. • 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 strategies.

18. 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

19. 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

20. 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.

21. Thinking About Medication Group • Future plans: • Conference on2/3/2012 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 medication.

22. ‘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 guidelines. www.adbusters.org

23. An illustration of my feelings about being given chlorpromazine when I’d asked for something ‘not sedating so I can keep up with my postgraduate study’. www.bonkersinstitute.org

24. Side effects are even more frightening when you can’t anticipate them and don’t understand what is happening. Having concerns dismissed is unhelpful.

25. www.plos.org Flickr / Kheel Centre Whose data? OUR DATA!

26. www.choiceandmedication.org Patient decision aids – because informed consent is important.