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, 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 My denial/resistance to change
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
[1010]

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
[1111]

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
[1212]

13. 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
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
[1313]

14. 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.

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 Partnerships To 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.
Campaigning To 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. E: cathrynkemp@hotmail.com
PAIN Painkiller Addiction Information
Network
@PAINcharity
Cathryn Kemp T: E: