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Scotland’s Hepatitis C Action Plan, a patient approach?

Scotland’s Hepatitis C Action Plan, a patient approach?. Except . Funding. £12000. Scotland Population: 5.2 million (~60% in the 4 main NHS Boards) HCV ever infected population: ~ 50,000 (~ 90% have injected drugs) Current IDU population: ~ 24,000 (~70% in the 4 main NHS Boards)

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Scotland’s Hepatitis C Action Plan, a patient approach?

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  1. Scotland’s Hepatitis C Action Plan, a patient approach?

  2. Except Funding £12000

  3. Scotland • Population: 5.2 million • (~60% in the 4 main NHS Boards) • HCV ever infected population: ~ 50,000 • (~ 90% have injected drugs) • Current IDU population: ~ 24,000 • (~70% in the 4 main NHS Boards) • Prevalence of HCV among current IDUs estimated at 50% Aberdeen Dundee Edinburgh Glasgow

  4. based on an extensive evidence base and consultation process • high level • embraces all service needs • adopts a multidisciplinary approach (MCNs!) • covered all geographical areas and settings • performance managed • supported by serious investment • addresses inequalities

  5. New clients presenting at drug services: Scotland 2009-10 • 10,325 sought help with drug use • 41% using illicit drugs at age 15 • 80% using illicit drugs by age 19 • 55% have injected drugs • 33% of injectors initiated by age 20 • 38% shared needles/syr by 20 • 58% shared other equipment by age 20

  6. MCN

  7. A little about me • Kenny, 56 years old • I have a wife and a daughter • I like to be active, walking and sports

  8. My Drug Use • A bit different than what you would expect • I used mostly at weekends • Not everyday, or for long periods

  9. I was a Functioning Drug User • G.P. Every 3 years for BBV Test • 2007 – Tests came back negative • 2010 – Letter arrive

  10. I have Hepatitis C • Referral • Hospital • C Plus, had a key worker

  11. The hardest thing..... • Informing my family • We are very close cats • They’ve stood shoulder to shoulder with me

  12. But started to get Educated • Attended my support group • Learning about BBVs • I kept a diary

  13. Diary of Treatment • Kept my appointment dates • D.N.A • Built professional friendships with treatment nurses

  14. Started Treatment • June 2011, Genotype 1, 48 Weeks • Ribavirin and Interferon • Blood taken every 2 weeks • Morning Appointments, 4 buses for round trip

  15. My Experience of Treatment • Physical and Mental effects • Fatigue • Flu like symptoms • Leg and Feet ulcers • Headaches • Nightmares

  16. But in December.... • I had lost the battle • No SVR • But I hope to win the war • This was a time to reflect

  17. The Power of Knowledge • Being Informed about your condition • Informing others of your experience • Hearing of other people’s experiences

  18. Taking Ownership • I Restructured my Life • And I took responsibility for my actions • And I started to get involved

  19. Open Doors • Recovery Summit • Hepatitis Scotland Peer Researcher • Member of the National Patient Forum • Joined Hepatitis Scotland’s Advisory Board • 3rd National Recovery Conference • Scottish Drugs Forum Conferences • World Hepatitis Day Community Action Research Project

  20. 2 days ago • Because of the National Patient Forum - Scotland held a Conference for People who have been diagnosed with Hepatitis C • Key experts in the field aiming information directly to those affected • Gathered information from those who attended as well

  21. Finally • Humble to be back in Dublin • Thank you for inviting me

  22. Summary

  23. A note of caution: What is the contribution of lifestyle factors • Spontaneous resolvers exhibit high rates of adverse liver-related outcomes (18-27 times that of the Scottish general population); Innes et al; Hepatology. 2011;54(5)1547-58 • Among Scottish HCV patients, 1/3 of liver cirrhosis cases are attributable to heavy alcohol consumption; Innes et al; Hepatology. 2013;57(2)451-60 • Eliminating HCV infection and eliminating liver disease are not synonymous. • Cannot ignore the importance of addressing lifestyle factors in an IFN-free age.

  24. NGO Involvement Pre 2003 UK Hepatitis Resource Centre (UK HCRC) (forerunner of Hepatitis Scotland) National Hepatitis C Stakeholder Conference in Edinburgh opened by First Minister Conference reception with First Minister Malcolm Chisholm held in Edinburgh Castle 2003 First National Hepatitis C Awareness Day in Scotland (UK HCRC led) National Hepatitis C Awareness Day in England held (Mainliners UK HCRC in partnership with British Liver Trust, Hepatitis C Trust, Eddystone Trust, Plus VE, UK Haemophilia Society) 2004 First UK Hepatitis C Awareness Day held (Mainliners UK HCRC in partnership with British Liver Trust, Hepatitis C Trust, Eddystone Trust, Plus VE, UK Haemophilia Society and local orgs across Scotland and rest of UK) Hepatitis C Parliamentary Event held as part of above (UK HCRC led) Hepatitis C Parliamentary Event in the Scottish Parliament , crucially all parties contributed to the event calling for an Action Plan. Raft of Parliamentary Questions (PQs) submitted to the Scottish Parliament by UK HCRC to continue to raise profile/awareness amongst MSPs Scottish Hepatitis C Parliamentary Group established by UK HCRC

  25. 2005 First draft Hepatitis C Action Plan published. Broad third sector input to consultation  2006 - 2007 Following publication, governance and national groups were established to coordinate and support the implementation of the Action Plan Phase I. Each group included third sector representation primarily through Scottish Drugs Forum, UKHCRC Scottish Drugs Forum, Mainliners UKHCRC, Hepatitis C Trust and patient group representatives were members of the Hepatitis C Action Plan Phase I Coordinating Group established to monitor implementation of the Plan and draft actions subsequently for Phase II. Range of third sector representatives attended national consultation event to vote on actions for Phase II Action Plan. Hepatitis C Trust established in Scotland by then and became part of Advisory Committee for the Hepatitis C Action Plan which encompassed representation from across the UK. Hepatitis C Awareness Days and Parliamentary Events held in the Scottish Parliament each year – national supply of resources (posters, leaflets etc) to NHS Boards and services across Scotland via UKHCRC   2008 Phase II Action plan published Scottish Drugs Forum, UKHCRC, Hep C Trust and patient group representatives were members of the Hepatitis C Action Plan Phase Coordinating Group established to monitor implementation of the Plan and other national networks Hepatitis C Third sector Network established

  26. Hepatitis C in Scotland: Milestones 1989 Discovery of HCV 1991 Antibody Test 1992 Interferon Therapy 1996HCV Diagnosis Database 1996-2002 Prevalence Surveys • Interferon + Ribavirin Therapy • Needs Assessment • Pegylated Interferon +Ribavirin Therapy 2003 UK Hepatitis C Resource Centre 2003-2007Clinical Database established 2004 Consensus Conference (RCP, Edin) 2004Parliamentary Working Group on Hepatitis C 2006-2008 Action Plan Phase I • SIGN Guidelines • Public Enquiry: Hepatitis C infection through NHS Treatment 2008-2011Action Plan Phase II

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