““Thinking About Thinking About Medication Group”Medication Group”

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 group

Disclaimer….!!!

Disclaimer….!!!

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, p.8)

The power of belief….. (Kirsch, 2009)

Expectancy of improvement

The strong therapeutic response to antidepressant medication is almost as strong to placeboStatistically 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 increasePrescriptions (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)

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)

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 peopleThe 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 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)

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 GroupBackground: 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.

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 GroupFuture 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 medication.

‘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

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

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

Whose data? OUR DATA!

www.plos.orgFlickr / Kheel Centre

Patient decision aids – because informed consent is important.

www.choiceandmedication.org

YORK AND SELBY REHABILITION & RECOVERY SERVICE PRESENTS...

A Thinking About Psychiatric

Medication Conference

Friday 2 March 2012

9.30am-4.30pm

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

Linda.Catt@nyypct.nhs.uk

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