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 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

MCN

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• 3rd 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)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.

Hepatitis Scotland1st Floor, 91 Mitchell Street, Glasgow, G1 3LNphone: 0300 343 0250www.hepatitisscotland.org.ukemail: info@hepatitisscotland.org.uktwitter: @hepscotlandfacebook: 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 MinisterConference 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) 2004First 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

2005First draft Hepatitis C Action Plan published. Broad third sector input to consultation 2006 - 2007Following 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

2008Phase 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: Milestones1989 Discovery of HCV 1991 Antibody Test1992 Interferon Therapy1996 HCV Diagnosis Database1996-2002 Prevalence Surveys1998 Interferon + Ribavirin Therapy1999 Needs Assessment2001 Pegylated Interferon +Ribavirin Therapy2003 UK Hepatitis C Resource Centre2003-2007 Clinical Database established2004 Consensus Conference (RCP, Edin)2004 Parliamentary Working Group on Hepatitis C2006-2008 Action Plan Phase I2007 SIGN Guidelines2008 Public Enquiry: Hepatitis C infection through NHS Treatment2008-2011 Action Plan Phase II