Prescribed Drug Misuse: Patient Perspective

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

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

4. 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]

5. 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]

6. 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]

7. 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]

8. 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 lozenges) in January 2010 • Two years after discharge on repeat prescription (on 60 lozenges a day) [8]

9. 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]

10. 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 [10]

11. 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 • Rehab – shame and guilt, denial, and finally acceptance [11]

12. 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 • Diagnosis tool for primary healthcare providers to identify those at risk of addiction to prescription and OTC painkillers [12]

13. Addiction sponsors who work within the patient’s community On the ground support taking into account the patient’s home life/emotional & economic context Walk-in services for pain and addiction patients for support Companionship Help in practicalities such as retraining, finding work and/or childcare Recovery Context • How can we improve patient after-care? • Is there after-care? • Close monitoring by informed GP services • Dedicated pain-addiction teams • Pain and Addiction Services working together • Combined multi-disciplinary patient-centred services [13]

14. Formation of P.A.I.N: Aims • EducationTo 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 & SupportTo 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 • IdentificationTo advise healthcare services on the possible development and delivery of services specifically for OPD patients.

15. Formation of PAIN: Aims (cont’d) • Advocacy Lobbying for change to services to. To work towards becoming a resource for those people who are worried about the risks of dependence themselves, or for a family member or loved one. • Integrated PartnershipsTo make connections with other bodies, such as commissioners, stakeholders, clinical services, treatment services, patient advocacy groups, professional bodies, and charities who work towards a shared goal. PAIN believes in innovation through collaboration. • CampaigningTo have a voice in both national and international discussions about OPD and its effects on patient populations and the wider social and family networks. To have a voice in the formulation of specific and appropriate treatment and recovery pathways for OPD patients.

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