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

Except £12000 Funding

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

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

New clients presenting at drug services: Scotland ,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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Summary

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) Among Scottish HCV patients, 1/3 of liver cirrhosis cases are attributable to heavy alcohol consumption; Innes et al; Hepatology. 2013;57(2) Eliminating HCV infection and eliminating liver disease are not synonymous. Cannot ignore the importance of addressing lifestyle factors in an IFN-free age.

Hepatitis Scotland 1 st Floor, 91 Mitchell Street, Glasgow, G1 3LN phone: facebook: Hepatitis-Scotland

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

2005 First draft Hepatitis C Action Plan published. Broad third sector input to consultation 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

Hepatitis C in Scotland: Milestones 1989Discovery of HCV 1991Antibody Test 1992Interferon Therapy 1996 HCV Diagnosis Database Prevalence Surveys 1998Interferon + Ribavirin Therapy 1999Needs Assessment 2001Pegylated Interferon +Ribavirin Therapy 2003UK Hepatitis C Resource Centre Clinical Database established 2004Consensus Conference (RCP, Edin) 2004Parliamentary Working Group on Hepatitis C Action Plan Phase I 2007SIGN Guidelines 2008Public Enquiry: Hepatitis C infection through NHS Treatment Action Plan Phase II