Prescribed Drug Misuse Patient Perspective Cathryn Kemp Chief

Prescribed Drug Misuse: Patient Perspective Cathryn Kemp Chief Executive of P. A. I. N

Overview • Lived Experience of Painkiller Addiction • How The ‘System’ Failed, How It Could Succeed • Formation of the Painkiller Addiction Information Network (PAIN)

Onset of Acute and Chronic Pain • Sudden onset of Acute and Chronic Pancreatitis • 40 hospital admissions in 4 years • Pain affected every level: mental, emotional, physical • Describing pain is difficult – issue for GPs/healthcare service providers • Impact on my life – living with pain & debility, unable to make a cup of tea, brush my hair [ 4

Treatment of Pain • Inpatient – IV morphine, tramadol then IV fentanyl • Outpatient – oxycodone, tramadol then fentanyl lozenges • Withdrawal symptoms being treated in hospital with tramadol – level of ignorance about effects of opioids on patients • Pain clinic – ketamine [ 5

Transition to Addiction • Repeat prescription for 100 mcg fentanyl patches, 200 mcg fentanyl lozenges (2008) • Taking the ‘extra’ lozenge • Slide into dependency – 11, 20, 30, 40, 50, 60 lozenges per day – all on prescription • Lying to GP about pain attacks to get prescription • Hiding lozenges around my cottage “just in case I ran out” • ‘Addict’ behaviours [ 6

Experiencing Addiction • Feeling trapped in a prison of my own making • Stuck in 3 -day cycle – get prescription, binge on lozenges, eke out remaining dose until the earliest point so that I could go back to my GP • Shame and guilt – hid addiction from family and friends • Desperation – suicide notes to family under my pillow each night, as I knew was taking a potentially fatal dose [ 7

Intervention • GP first extra prescriptions, GP aware addiction after four months (taking 15 lozenges a day) • No support for GP at crucial point • No individual support for me as patient until too late • GP Services • Electro-acupuncture • Provocative Therapy • Charts for withdrawal • GP ‘cut me off’ (refused to prescribe any more [ 8

Intervention • Substance Misuse Service • Offered methadone as outpatient • I refused as knew I needed inpatient treatment, which was refused three times • My denial/resistance to change • Withdrawal symptoms overwhelming • Scared of facing the problem • Still in denial regarding addiction (though of course I knew I was abusing my painkillers) [ 9

Recognising My Addiction • Rehab • Denial/Fighting the label of ‘addict’ • Group therapy – similarities with other ‘street’ drug users • Acceptance/facing stigma • Determination to come off lozenges completely/start of my recovery process [ 1

How Does it Feel to Enter the Addiction Treatment System? • Substance Misuse Service – frightening; homeless people queuing for methadone, needle exchange • Stigmatised – felt I was different to ‘street’ users (though I wasn’t) • Refused the service • Couldn’t travel to get methadone daily • Didn’t want to associate with street users • Intimidated by the environment [ 1

How Can We Improve Services? • Education of GPs & Patients • A primary objective of PAIN – taking responsibility on BOTH sides • Open dialogue about Opioid Painkiller Dependence • Stigma-busting so that addicts feel they can seek help • Individualised treatment services • Taking into account circumstances, willingness to change, patient’s pain needs • Screening [ 1

Recovery Context • How can we improve patient after-care? • Is there after-care? • Addiction sponsors who work within the patient’s community • On the ground support • Close monitoring by informed GP services • Dedicated pain- taking into account the patient’s home life/emotional & economic context addiction teams • Walk-in services for pain • Pain and Addiction Services working together • Combined multi- and addiction patients for support • Companionship • Help in practicalities [ 1

Formation of P. A. I. N: Aims • Education To raise awareness among healthcare professionals and services, people and their loved-ones about Opioid Painkiller Dependence (OPD) to either prescribed or over-the-counter medications. • Help & Support To signpost advice and resources to those suffering from dependence to their opioid painkillers, and their loved ones. Establishing a helpline for anyone who is worried about developing possible dependence, or a family member or loved one • Identification To advise healthcare services on the possible development and delivery of services specifically for OPD patients.

Formation of PAIN: Aims (cont’d) • Advocacy Lobbying for change to

www. painkillerfree. co. uk PAIN Painkiller Addiction Information Network @PAINcharity Cathryn Kemp T: 07816 780159 E: cathrynkemp@hotmail. com