National Hepatitis C ODN Stakeholder Eventhcvaction.org.uk/sites/default/files/resources/National... · 2019-08-23 · DTS –working with the largest DTS providers to drive organisational

National Hepatitis C ODN Stakeholder Event

Thursday 4th July 2019

#HCVODNevent

Welcome

Prof Matthew Cramp

President, British Association for the Study of the Liver

Dr Ahmed Elsharkawy

Chair, British Viral Hepatitis Group

National perspective

Prof Graham Foster

National Clinical Lead for ODNs, NHS England

HCVThe National Perspective

Graham R FosterProfessor of Hepatology

Barts Liver CentreNational HCV clinical lead


• Overview of strategy

• Where are we

• Niggly bits



• Where are we

• Niggly bits

Strategy

• We are committed to eliminating HCV as soon as possible

• We are mobilising the elimination initiatives

• We know (and expect) problems on the way

Eliminating HCVThe NHSE commitment

• Unlimited access to drugs and associated costs

• ~ £20 million of support

• ~ £40 million CQUIN support

Eliminating HCVThe NHSE commitment

• Unlimited access to drugs and associated costs

• ~ £20 million of support

• ~ £40 million CQUIN support

Contingent upon performance in year 1

NHSE – next years plans

• Year 1 needs to see a 30% increase in treatment rates

• A major focus is on data and reducing the uncertainty around incidence

NHSE et al will provide solution options

ODN 1

ODN 2

ODN 3

ODN 4

ODN 5

ODN 22

……….

Networks receive £500 per treated patient + extra testing


ODN 1

ODN 2

ODN 3

ODN 4

ODN 5

ODN 22

……….

Drug service mapping and peers

Prison support

Needle exchange

GP testing


• Options offered to networks – choices made

• Contracts with providers signed

BUT…..


• Some networks assumed that existing initiatives would continue

• Some networks want to change their scores



• Where are we

• Niggly bits

2019 – Year 1Where are we?

• Registry - 46,000 patients

• Treated patients - 41,551

• 43% reduction in liver transplants

• 3% reduction in deaths from HCV

2019 – Year 1Where are we?

April – June 2018 = 2774 treatments

April – 25 June 2019 = 2767 treatments



• Where are we

• Niggly bits

Niggly bits

• Acute HCV

• Reinfection

Niggly bits

• Acute HCV – policy approved, sign off soon

• Reinfection – policy proposed (and funded)

Niggly bits

• Drug wastage

Niggly bits

• Drug wastage

New guidance to be issued soon – 75% rule

Niggly bits

• On treatment testing, alcohol, on-going drug use

Niggly bits

• On treatment testing, alcohol, on-going drug use

• Guidance issues – treatment is always the preferred option

Niggly bits

• Rate card and percentages

Niggly bits

• Rate card and percentages

Idiots guide

• All G14 get graz/elb

• Switch to alternatives when you are clear the target has been hit

HCV National Picture

• The new Elimination Programme is revving up

• We now need to understand what does, and does not, work

• Today is about understanding the opportunities and sharing experience

Elimination plan – Gilead Sciences

Peter Smethurst

Director, Patient Access to Care, Gilead Sciences

Gilead’s Elimination Initiatives

HCV Action ODN stakeholder event

Peter Smethurst

Director – Patient Access to Care

DOP July 2019 000/UK/19-07/NM/1666

Overview of Gilead’s Elimination Initiatives

30

DTS: Other

providers

Needle exchange:

Change, Grow, Live

DTS: NHS SMP

Alliance

DTS: Change,

Grow, Live

Prison: Care UK &

Hep C Trust

South Asian HCV

awareness

campaign

Note: “Dashed” initiatives are pilots in yr1 and are limited to a few geographies

Together, we’ll eliminate HCV in DTS and Care UK prisons by 2023

A common approach in DTS and Care UK prisons

We commit to:

– Supporting providers to diagnose

– Providers engaging with ODNs to ensure effective care pathways

– Better data capture and sharing between providers and NHS

– Working with ODN hub to plan and track progress together

My ask of you…

…treat us as partners, involve us in planning, solve problems together

31

DTS – Gilead is supporting all providers

32

All providers

Awareness materials being distributed in

preparation for World Hepatitis Day

Expanded Gilead team on ground:

• delivering BBV training to front-line staff

• facilitating pathway improvement

workshops 9th July

• coordinating with ODNs

• highlighting best-practice and providing

opportunities for exchange

Gilead regional commissioning team to

effectively engage D&A Commissioners,

CCGs and Trusts as required to re-engineer

care pathways

DTS – working with the largest DTS providers to drive organisational change

33

Change Grow Live

• Agreement extended

• Piloting delivery of Gilead DAA

into the service via homecare in 5

sites - from end-July

• Single ODN reporting spec to be

agreed - July

• National approach to sharing

patient identifiable information

between CGL and NHS - July

• Data quality improving through

CRiiS system changes. Planned

integration with Manchester labs

and treatment registry

• Funding available for regional and

national level initiatives

NHS Substance Misuse Provider Alliance

• Joint Working Agreement to be

signed - early July

• Governance board kick-off meeting

18th July

• 3 regional coordinators recruited 8th August, with start dates agreed by 18th August

• Expansion of Gilead DAA deliverypilot

• Funding available for regional and national level initiatives

Other large DTS Providers

• New initiative

• Working to establish similar

contracts - go-live Sept/Oct

Note: Gilead has no access to patient identifiable data

Care UK Prisons – Partnering with Care UK & Hep C Trust

34

Reception testing

• Embed effective reception-based BBV

screening and simplified HCV treatment

pathways

• Contract to be signed – July

• National BBV nurse coordinator - already

recruited

• Recruitment underway for 6 regional

coordinators to support prisons and

engage with ODNs

• Gilead field team to support BBV

education, pathway planning and design

HCV Intensive Test and Treat (HITT)

• Wing-based testing of all prisoners who did

not have a reception-based BBV test

• Contract to be signed – July

• National coordinator being recruited – Aug

• 10 prisons identified for 1st wave

Pilots – Limited geographic deployment in year 1

35

CGL: Needle exchange

• Focused on needle exchange

attached to DTS or GP settings

• This is distinct from needle exchange

in community pharmacy

• We can diagnose in needle

exchange.

• Is LTC improved in settings where

there is an adjacent pathway?

• Or must we Test and Treat?

• 3 pilot sites initially

South Asian awareness campaign

• Building upon the learnings of

HepFREE and others

• NHSE to undertake activity with GPs

to ensure a robust pathway

• We will use our experience at

developing and measuring marketing

campaigns at pace

• Up to 5 ODNs as part of Y1 pilot

• Existing facebook campaign “Be

Free of Hep C” to be updated to

target population – Aug

PRISONS

Points of contact for DTS and Prisons

David Weir

36

Steve Cox

Fiona Taylor Mark Denton

Christine Taylor Pinda Garcha

Matt Milner Andrea Coulson

Andrew Milner Kate Dorrington Andy Jones

Simon Fitzgerald Kate Dorrington

Together, we can be world leaders in the quest to eliminate HCV

37

“Australia was a world leader in providing

universal access but we are now falling behind in

identifying those who will benefit from treatment”

“We now look to the incoming Australian

government to back innovations like this…”

Elimination plan – MSD

Richard Walker

Peer Support Initiative Lead, MSD

Elimination plan – AbbVie

Asim Humayun

National Sales Manager, HCV, AbbVie

Elimination deal – ODN perspective

Dr Douglas Macdonald

Clinical Lead, North Central London ODN

The Elimination Initiatives –an ODN perspective

Doug Macdonald

WHHT (Watford)ENH (Lister)

RFL (RFH, BH, CFH)Whittington

North MiddlesexCNWL (Mortimer Market)

UCLHGOSH




UCLHGOSH

HMP The MountHMP Pentonville




UCLHGOSH


CGL Camden x2CGL HatfieldCGL HertfordCGL StevenageCGL Watford CGL - Spectrum

W D P – EdgwareWDP Barnet

The Grove IDASSMargarete Centre

(Enfield D&A Service)




UCLHGOSH


CGL Camden x2CGL HatfieldCGL HertfordCGL StevenageCGL Watford CGL - Spectrum

W D P – EdgwareWDP Barnet

The Grove IDASSMargarete Centre

(Enfield D&A Service)

CHIPCWPCC

Dispensing Network

CNS Network

Indrajit Network

Martha Network

The GroveHaringey

The Nodal Network Plan

Testing (HCV Ab)

Confirmatory HCV RNA

Liver Assessment

Virus Assessment

Treatment Monitoring

Treatmentselection

Outcome Assessment

Opt-Out(BEH MHT)

Community Pharmacy

Testing pilot

MERCK/LJWG

CNWL NHS TRUST

Venous Blood SamplingIndrajit Ghosh

FibroscanCNS Claire Smith

RFL NHS TRUST

Pharmacist Tina/Fatema

RFH MDT

CNS Claire Smith

CNS Claire Smith

Indrajit Ghosh

Cirrhosis Surveillance

Whittington NHS TRUST

NMUH NHS TRUST

Deepak Suri, Cumlaut Lourdes

Andrew Millar, Katie Portou

The Nodal Network Plan

• Protocols and Contracts: 31 MoUs/SLAs and SOPs

• Training and Education: CNS-led course for non-specialists (INHSU module and teaching day)

• Information Technology: PriorityC - a bespoke patient management system

Progress

• Cirrhosis <15% by mid-2016

• 2017: microelimination in post-OLT, HIV, dialysis

• 2018: Outpatient activity <20% of all treatments

• 40% fall in HCV-related hospital admissions

• 3000th patient treated with DAAs

North Central London

0

0.02

0.04

0.06

0.08

0.1

0.12

0.14

0.16

0.18

0.2

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r

May Jun

Jul

Au

g

Sep

Oct

No

v

Dec Jan

Feb

Mar

Ap

r

May Jun

Jul

Au

g

Sep

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No

v

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Feb

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r

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Jul

Au

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2016 2017 2018

Pro

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CV

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Proportion of Total Cases Treated by ODN

90% reduction in new cases?

60% fall in mortality?


Testing (HCV Ab)


Liver Assessment

Virus Assessment


Treatmentselection

Outcome Assessment

Progress - Goals

Sustained benefit from SVR-Other infections -Vascular disease-Overdose-Other liver disease (alcohol)

Non-Liver Morbidity

Testing (HCV Ab)


Liver Assessment

Virus Assessment


Treatmentselection

Outcome Assessment


ENGAGEMENT

Non-Liver Morbidity

Progress - Goals

The Elimination Initiatives


TESTING REGISTRY






1. Pathways evolve, they are not mapped and implemented

Testing (HCV Ab)


Liver Assessment

Virus Assessment


Treatmentselection

Outcome Assessment

Opt-Out(BEH MHT)

Community Pharmacy

Testing pilot

MERCK/LJWG

CNWL NHS TRUST



RFL NHS TRUST


RFH MDT

CNS Claire Smith

CNS Claire Smith

Indrajit Ghosh



NMUH NHS TRUST



2. Pathways are fragile and require love and nurturing

Testing (HCV Ab)


Liver Assessment

Virus Assessment


Treatmentselection

Outcome Assessment

Opt-Out(BEH MHT)

Community Pharmacy

Testing pilot

MERCK/LJWG

CNWL NHS TRUST



RFL NHS TRUST


RFH MDT

CNS Claire Smith

CNS Claire Smith

Indrajit Ghosh



NMUH NHS TRUST



3. The real barriers are not what we originally thought

The key barriers are….

-Metric fixation

-Professional boundaries (perceived)

….and not: Financial, Legal, Contractual, technological, Informational

Barriers are overcome by intrinsically motivated individuals.

The Team

• CNS (RFH): Meena Ju, Ben Chapman, Mailis Burton, Claire Smith, Lynda Greenslade,

• CNS (Partner): Georgiana Palmes, Katie Portou, Cumlaut Lourdes, • Pharmacists: Tina Shah, Fatema Jessa• Pathway Coordinators: Chantelle Redmond, Philippa Ekin• Data Manager: Muhammad Paracha• ODN Manager: Keri Bramble, Brian Ashpole• Partners: Indrajit Ghosh, Laura Waters, Martha Ford, Deepak Suri, Mo Shariff,

Paul Trembling, William Rosenberg, Andrew Millar, Alastair Bamford• Virology: Tanzina Haque, Claire Booth• Contracts: Rachel Lewis

Q&A and discussion

Prof Graham Foster, Peter Smethurst, Richard Walker, Natalie Wood, Dr Douglas Macdonald

Breakout session 1 – Community outreach: Problem identification

Janet Catt

Consultant Nurse, King’s College Hospital Foundation NHS Trust

Community Outreach

Breakout Session (1)

“Problem Identification”

Janet Catt MSc RN

Nurse Consultant

“I am a patient who might have hepatitis C – how do I get treatment?”

“You said I could get treatment ……… been told I have to wait”

“I thought it was supposed to be easier for patients”

There are sites where patients can get treated…

Prisons

RehabilitationProbation

Service

Rough sleepers /

Hostel (a

continuing cycle)

Drugs & Alcohol

ServiceGP Surgery Pharmacy

Test, referral, treatment

ReferralTest Treatment

How should we work together to identify clients/patients to improve uptake of

HCV testing, referral and treatment?

What are the challenges for client / patient identification?

What do you consider to be the 3 main barriers identifying

clients/patients for treatment

Breakout session 2 – Reaching ethnic minority groups

Dr Mark Aldersley

Clinical Lead, West Yorkshire ODN

Reaching ethnic minority populations

Problem identification

The scale of the problem

• Do we know the prevalence and associated burden of viral hepatitis in migrant populations?

– Paucity of studies concentrating on case finding in this population vsPWIDs

– Under representation of ethnic minorities in research

– Populations that have been involved in prevalence studies to date -biased/self-selected/health aware vs undocumented migrants

Conclusion: PROBABLY NOT!

Case identification/screening programme principles

• Success of a screening programme is dependent on how well the target population engages (1)

• Engagement requires awareness, knowledge and understanding of the disease being screened for + knowledge of risks and implications of leaving the disease undiagnosed/treated.

(1) Pavlin N, Gunn J, Parker R, Fairley C, Hocking J. Implementing chlamydia screening: what do women think? a systematic review of the literature. BMC Public Health. 2006;6:221.

Ethnic minorities + non hep screening programmes

• Attendance at pre-existing preventative care strategies by ethnic minorities is low (2,3).– Breast cervical, colorectal– Attendance is particularly poor in migrants originating from Indian subcontinent/South Asia (4-6)

• Possible reasons:– Lack of understanding of disease/reasons for screening– Language and communication barriers– Illiteracy– Inaccurate screening registers– Frequent changes of address– Extended periods of overseas travel– Inequalities in access to healthcare services– Clinician-patient relationship

(2) Vernon S. Participation in colorectal cancer screening: a review. Journal of the National Cancer Institute. 1997;89(19):1406–22. (3) Nazroo J. The structuring of ethnic inequalities in health: economic position, racial discrimination, and racism. American Journal of Public Health. 2003;93(2):277–84. (4) Hoare T. Breast screening and ethnic minorities. Cancer. 1996;41:38–41. (5) Sutton G, Storer A, Rowe K. Cancer screening coverage of south Asian women in Wakefield. Journal of Medical Screening. 2001;8(4):183–6. (6) Robb K, Solarin I, Power E, Atkin W, Wardle J. Attitudes to colorectal cancer screening among ethnic minority groups in the UK. BMC Public Health. 2008;8:34.

The reasons: illiteracy

• Illiteracy is prevalent in migrant populations residing in England

• High rates: females, first generation, elderly

• Illiteracy in all languages prevents use of translations and renders written invitations useless.

The reasons: clinician-patient relationship

• Black and ethnic minority groups have a lower level of trust in their clinician compared to individuals of Caucasian origin (7,8)

– This will impact on voluntary attendance to participate in preventative screening strategies.

(7) Tarrant C, Stokes T, Baker R. Factors associated with patients’ trust in their general practitioner: a cross-sectional survey. British Journal of General Practice. 2003;53(495):798–800. (8) Carpenter W, Godley P, Clark J, Talcott J, Finnegan T, Mishel M, et al. Racial differences in trust and regular source of patient care and the implications for prostate cancer screening use. Cancer. 2009;115(21):5048–59.

Case finding for viral hepatitis – attitudes of migrant populations

• Key themes emerging from research in America/Australia/Netherlands/UK

• Low levels of awareness about hepatitis

• Little knowledge about:

– Routes of transmission

– Symptoms associated with the disease

– Long-term consequences of chronic infection (9-13).

The insidious onset and asymptomatic nature of viral hepatitis has a negative impact on individuals accepting the offer of testing.

(9)Caruana S, Kelly H, De Silva S, Chea L, Nuon S, Saykao P, et al. Knowledge about hepatitis and previous exposure to hepatitis viruses in immigrants and refugees from the Mekong Region. Australian and New Zealand Journal of Public Health. 2005;29(1):64–8. (10) O’Connor C, Shaw M, Wen L, Quine S. Low knowledge and high infection rates of hepatitis in Vietnamese men in Sydney. International Journal of Sexual Health. 2008;5(3):299–302.(11) van der Veen Y, Voeten H, de Zwart O, Richardus J. Awareness, knowledge and self-reported test rates regarding Hepatitis B in Turkish-Dutch: a survey. BMC Public Health. 2010;10(1):512. (12) Wallace J, McNally S, Richmond J, Hajarizadeh B, Pitts M. Managing chronic hepatitis B: A qualitative study exploring the perspectives of people living with chronic hepatitis B in Australia. BMC Research Notes. 2011;4(1):45. (13) Kue J, Thorburn S. Hepatitis B knowledge, screening, and vaccination among Hmong Americans. Journal of Health Care for the Poor and Underserved. 2013;24(2):566–78.

Stigma + cultural sensitivity

• Well established link between IVDU & viral hepatitis in developed countries.

– Relationship exists between HCV and ‘socially unacceptable’ behaviours.

• Positive diagnosis + fear of isolation from members of a community = reluctance to accept testing.

• Case finding in high risk populations based on ethnicity/place of birth could this be perceived as discriminatory??

Examples of previous case finding initiatives in ethnic minorities

• Oral-swab testing for viral hepatitis in mosques at five sites in England (South Asian migrants).

• Free HCV testing in NYC – invitation through Russian cable television (immigrants from the former Soviet Union).

• Prevalence of HBV/HCV at a community health fair (Asian-American migrants).

• Advertised educational events with free testing for HBV/HCV(Turkish community of Arnhem).

• Advertised free testing event in first generation migrants (Afghanistan, Iran, Iraq, the former Soviet Republics, and Vietnamand living in Arnhem and Rheden).

• Screening for viral hepatitis in places of work & ‘piggy-back’ BBV testing with TB testing in Scotland (HepScreen – migrants in European union).

• Point-of-care screening for HBV in a primary care clinic in undocumented migrants in Brescia, northern Italy.

• Disease awareness activities with free HBV testing at outreach locations (Chinese migrants in Rotterdam).

• HCV awareness meetings at mosques and Pakistani Women's centre in the city of Dundee with short-term outreach HCV testing clinics in the same venues.(Pakistani population in Scotland).

• HBV education and screening sessions held in community centres (British Chinese and South Asian populations in the North East of England).

• Prevalence of viral hepatitis, syphilis and HIV in a population of refugees of various nationalities, living in the Asylum Seeker Centre in Bari Palese, Southern Italy.

• Viral hepatitis educational and screening sessions at Egyptian meeting places(First generation Egyptian Migrants living in the Netherlands).

• Screening first and second generation migrants for viral hepatitis C in primary care (HepFREE)

Better Medicine Better Health

Screening in pregnancy

Prevalence of HBV

Asian 1.1%

White Caucasian 0.4%

African 3%

Mahmood, Moreea et al. BSG March 2008


Community Study

DH/Big Lottery Funded study of viral hepatitis in

S. Asians living in the UK

Five centres around the UK

Walsall, Sandwell, Bradford, W.London,

E. London

Community screening using oral swabs


Community study

From July 2007 to August 2008

We screened 1456 people from South Asian Community in

Bradford for Viral Hepatitis B & C

20 community centres/mosques


Results - HCV in People Born in Pakistan

Total HCV + ve

Bradford 955 14 (1.4%)

E. London 1080 44 (4.0%)

W. Midlands 434 7 (1.6%)

Better Medicine Better HealthBetter Medicine Better Health

Results

5159 adults tested

E. London 2336

W. London 404

Bradford 1396

West Midlands 1069

Region in Pakistan Total HCV + ve

2470 65 (2.63%)

Punjab 1051 38 (3.6%)

Sindh 590 2 (0.03%)

Kashmir/NWFP 226 3 (1.33%)

HepFree: Screening migrant patients for viral hepatitis in primary care. A 90,000 patient randomised controlled trial indicates benefits

are most obvious in older patients

Stuart Flanagan1, Victoria J. Appleby1, Jessica Gaviria1, Jan Kunkel1, Vichithranie Madurasinghe1, Sandra Eldridge1, Sulleman Moreea2, Kosh

Agarwal3, Ellie Barnes4, Lizi Sims4, Chris Griffiths1, Martin Pitt5, Andy Salmon5, Graham R. Foster1

1Queen Mary University London, 2Bradford Institute for Health Research, 3Kings College Hospital London, 4Oxford University NHS Trust, 5University of Exeter

Aims

• HepFree is a large, national screening trial involving 90,250 patients in control and interventional primary care practices

Overview of Trial Design

Opportunistic screening

58 Urban GP practices

8 Control Practices

50 Intervention Practices

Targeted screening

Asked to screen from eligible population

Offered £25 per patient Ongoing testing support

18 month screening period at each practice HBsAg & HCV Ab + reflex RNA testing

24 practices capped to 500 patients26 uncapped

Primary Outcomes

• Screening• Control GP practices: - proportion of patients eligible for screening

• Intervention GP practices: - proportion of patients eligible and invited for screening

• Engagement• The proportion of potential participants that engage defined as:

– Attending 3 different hospital appointments (or 2 attendances if HCV RNA –VE)

• The costs associated with delivering the intervention were recorded and used for the cost effectiveness analysis.

Secondary Outcomes

• Proportion of eligible new registrants screened

• Proportion of patients compliant with their prescribed management plan (attending at least 1 visit post management plan)

• Outcome of therapy-– SVR12 for HCV patients

– 80% reduction of viral load after 12 weeks of therapy for HBV patients

Outcomes

• 58,512 eligible patients were identified in intervention practices

• 47,883 (82%) of whom were invited by letter for screening over an 18 month period

• 31,738 eligible adults in control practices

Testing rates

Control Practices

Total Eligible 31,738

Tested =543 (1.7%)

Not Tested= 31195

Intervention Practices


Tested =11386(19.5%)

Not Tested= 47126

INCIDENCE RATIO 3.7p-Value 0.014

Screening Outcomes-Ethnicity and AgeStandard screening Interventional screening

Eligible

patients

Screene

d

patients

%

Uptake

Eligible

patients

Screened

patients

%

Uptake

TOTAL 31,738 543 1.7% 58,512 11,386 19.5%

Black

African/Caribbean3,142 112 3.6% 6,866 545 7.9%

Indian

Subcontinent16329 124 0.75% 27857 8867 31.8%

Other 12267 307 2.5% 15873 1974 12.4%

Female 16,549 304 1.8% 30,187 6,537 21.7%

Male 15,189 239 1.6% 28,324 4,848 17.1%

<40 years 20,428 371 1.8% 36,115 5151 14.2%

> 40 years 11,310 172 1.5% 22,397 6,235 27.8%

Enhanced Invitation Letter

• Additional Information Leaflet• Based on pre-trial focus group

interviewsand qualitative analysis of knowledge

and attitudes to viral hepatitis

Standard Screening Invitation Letter

Invitation Letters at Intervention Practices

V

Response = attendance for screening within 31 days of receipt of letter

No significant benefit from a bespoke invitation letter

Type of invitation Numbers screened

within 31 days of an

invitation been sent

Incidence rate ratio

[95% confidence

interval]

Number %

Standard invitation (18

practices)720 / 15,844 4.5%

Enhanced invitation (32

practices)1,032 / 28,095 3.7% 0.703 [0.378 to 1.306]

P = 0.265

Number of infections found

Number of Infections found

Control Practices


Tested =543 (1.7%)

Not Tested= 31195

Positive =17

Intervention Practices


Tested =11386(19.5%)

NotTested =47126

Positive =202 (1.8%)

Tested

+ve % +ve HBsAg +ve

HBsAg +ve(%)

HCV Ab +ve

HCV Ab +ve(%)

RNA +ve

RNA +ve(%)

TOTAL 11,929

237 2.0% 127 1.06%

111 0.93 36 0.3%

Afro/Cari

657 11 1.7% 9 1.37%

2 0.30 0 0

Indian SC

8991 166 1.8% 70 0.78%

96 1.06 34 0.38%

Other 2281 69 2.63%

48 2.1% 13 0.57 2 0.09%

GENDER

Male 6841 104 1.5% 41 0.60%

63 0.92 20 0.29%

Female

5087 133 2.6% 86 1.69%

48 0.94%

16 0.31%

Who tested positive for Viral Hepatitis?

Engagement

• Practices were randomised to ‘community’ or hospital care

• Engagement in hospital care was 89.8%

• Engagement in community care was 87.9%

Conclusions: Screening Immigrants

• Screening in immigrants is clinically and cost effective

• 19.4% of eligible patients were tested (1.7% in controls)

• 1.8% had viral hepatitis and ~ 90% engaged in care

• A focus on immigrants > 40 years old has most benefits

Recommendations

• Pay Primary Care Physicians for case-finding

• Target Migrants aged >40 years

Case finding in ethnic minorities

• Outcomes from the above studies suggest that this is feasible and individuals will engage.

• But the methods used to engage need more thought: letter invitations/appointment based screening in this group simply do not work…

Examples of previous case finding initiatives in ethnic minorities

• Oral-swab testing for viral hepatitis in mosques at five sites in England (South Asian migrants).

• Free HCV testing in NYC – invitation through Russian cable television (immigrants from the former Soviet Union).

• Prevalence of HBV/HCV at a community health fair (Asian-American migrants).

• Advertised educational events with free testing for HBV/HCV(Turkish community of Arnhem).

• Advertised free testing event in first generation migrants (Afghanistan, Iran, Iraq, the former Soviet Republics, and Vietnamand living in Arnhem and Rheden).

• Screening for viral hepatitis in places of work & ‘piggy-back’ BBV testing with TB testing in Scotland (HepScreen – migrants in European union).

• Point-of-care screening for HBV in a primary care clinic in undocumented migrants in Brescia, northern Italy.

• Disease awareness activities with free HBV testing at outreach locations (Chinese migrants in Rotterdam).

• HCV awareness meetings at mosques and Pakistani Women's centre in the city of Dundee with short-term outreach HCV testing clinics in the same venues.(Pakistani population in Scotland).

• HBV education and screening sessions held in community centres (British Chinese and South Asian populations in the North East of England).

• Prevalence of viral hepatitis, syphilis and HIV in a population of refugees of various nationalities, living in the Asylum Seeker Centre in Bari Palese, Southern Italy.

• Viral hepatitis educational and screening sessions at Egyptian meeting places(First generation Egyptian Migrants living in the Netherlands).

• Screening first and second generation migrants for viral hepatitis C in primary care (HepFREE)

Reaching ethnic minority populations

Identifying solutions

Considerations:

• What are you currently doing and how could you improve your service: please consider:

– Healthcare professional awareness

– Community awareness

– What are your barriers to engaging the S Asian community

– The environment for testing, assessment and treating....are they appropriate and culturally aware

– Who can help you achieve your goals

Considerations

• Which groups have you identified in your communities?

• Do they have particular needs?

• Are there barriers to accessing healthcare?

• Are there cultural considerations?

• What can you do to break down the barriers to accessing

testing and treating?

• What resources do you need?

Engaging ethnic

minorities

Multi-faceted approach

Education via mosques/religious meetings

Spokespersons/championsFemale & male

One-stop shop approach –test/result/counsel same sitting (reduce LTFU)

Engage individuals previously treated at these sessions (mentors)

Multiple testing locations –ED/GP/mosque/religious fate/work place

Opportunistic testing

Adverts/social media –reduce stigma

Breakout session 3 – Treatment in prisons

Prof Ashley Brown

Clinical Lead, West London ODN

Breakout session 4 – Engaging with local commissioners & other partners

James Spear

ODN Manager, Leicester ODN

James Spear

Leicester Hepatitis C Network Manager

Specialised Commissioning – Barry O’Neill

Family roles

Drug services

Health & Justice

Why I made contact

Regular meetings

Data sharing & Network updates

Expanding contact groups

ODN Engagement Evening

Homeless & Rough Sleeping screening

Commissioner awareness of service

Prison services

Positive interactions needed

Education is key

Involvement with commissioners is essential

Support in identifying other key leads

Patient perspective

Tony Gillham

Drug and alcohol service perspective

Mike Trace

CEO, Forward Trust

Peer support model

Stuart Smith

Director of Community Services, The Hepatitis C Trust

The Hepatitis C Trust

Peer to Peer Education

Testing & Treatment

Stuart Smith

As a sustainable healthcare intervention

Target population:People attending drug services, rehabs, detoxes, hostels and day programmes who are currently or previously affected by substance misuse

History

Reach into the substance user community and deliver core messages about the importance of prevention, testing and treatment assessment

Deliver workshops based on a peers personal experience of hepatitis C diagnosis, care and treatment

Improve awareness of hepatitis C amongst PWIDs

Motivate people at risk to access testing

Motivate people already diagnosed to access specialist services for liver assessment & treatment decision

Ultimately – change attitudes towards hepatitis C amongst PWIDS & wider community

Objectives

First Hepatitis C Trust Peer Project 2010

Aims

Passing on Information

A number of interviewees explicitly indicated that they had passed on messages from the training to their peers:

“I speak about it quite a bit with people I see in the service. I’ve also seen other service users who’ve been to the sessions telling others about it outside the main building”

“I’ve spoken about what I learned in the session with my partner – we discussed the importance of being careful, the thing about notes which neither of us had known, and about the developments in treatment.”

The last group I attended

Why are peers needed?

• Trust leads to engagement

• Empower patients

• Leave No One Behind

• Provide vital link between community and secondary care

• Current community services climate

Advanced Disease

Committed to Recovery

Stable on OST

Only In touch with NSP

Residential Detox

Hostels – Homeless Shelters

Ex IDU – Now Alcohol

Presenting with Symptoms

New Presentations

Making Positive

Changes

GP Shard care

Loose Key Worker

Relationship

Unlikely to have any link

with HCV outreach services

even if delivered within

drug service setting

Already engaged

Easier to engage

Easier to engage

Known & ready for treatment

Need for Workforce

development & Peer

messaging

Difficult to engage

Possibly only through peers

in the community

We need to go beyond the current boundaries of care

Introducing the Peer Support Lead

• Develop a network of Peers to deliver workshops & provide individualised support for those seeking or accessing HCV treatment

• Contribute to the development of patient focused care pathways

• Form partnership working agreements with local community services

• Work with ODN’s to ensure that patient representation exists at every level of decision making

• Work with ODN’s to establish 2 way data communication for monitoring purposes

• Deliver & provide support to local testing initiatives and awareness campaigns

• Coordinate Workforce development for frontline staff

Finding the right person

• Patient focused

• Personal experience

• Ability to lead

• Work experience

How it works

• Mapping of services

• Build relationships with service providers

• Advertise for peers & offer workshops

• Discover existing & Develop new pathways

• Training for peers & frontline workers

• Deliver Workshops, Coordinate Testing / identify HCV+ patients and accompany to clinic

What we need….

• A warm welcome

• Honorary contracts

• ISA’s

• Access to Trusts transport & incentives

• Active involvement in service design

• DBST provision

Support to treatment

464

Treatment starts

1035

HCV+ being supported

Don’t forget the indirect outcomes

Thank You….

Follow Me

Peer facilitates a workshop

Client approaches peer after the talk

Peer has direct number of clinic

Referral made direct

Peer attends clinic with patient

PPPPPPPPPPPPPP

Peer starts treatment

This outcome is being achieved

within 2 – 4 weeks

What we do

• Provide vital link between community and secondary care

• Generate appropriate messaging within the drug using

community

• Redesign pathways driven by the patient

• Provide One to One support based on the individual need

• Support services to develop engagement strategies

• Co deliver awareness campaigns & testing within local services

Hepatitis C in prisons

Dr Iain Brew

National Deputy Medical Director (Health in Justice), Care UK

Hep C in Prisons

#Elimination2025

4 July 2019

National Hepatitis C ODN Stakeholder Event

University of Warwick

Dr Iain Brew

Elimination 2025Start Low – Go Slow

148

BUT this

isn’t

methadone

titration!!!

What is Opt-out?

149

1) Population screening for antibody positive

“Want your bloods done, luv?”

“We test everyone because…

is that OK with you?”

2) Diagnostic testing – is there virus present?

Point of careand direct entry to treatment

150

Delay = attrition

Short sentences = treatment failure

Reduce attritionfaster testing

151

Screening

• DBST takes a week (OK 3 days in some places)

• PoC serology test takes 15 mins more tests needed

Testing

Remand sites…

PoC RNA testing

= 1 hour to diagnosis

Reduce attritionLinkage to care

152

PoC RNA test:

Pangenotypic treatment ASAP – use in remand/homeless

Venous blood testing

Current model…but accelerated/simplified

Simplified pathways

Positive (RNA test)

Bloods

ODN approval

Start treatment

Continuity

Proof of cure

153

Simplified pathways

154

Elimination 2025An explosion of Opt-out

155

We need to triple testing rates

Elimination 2025Challenges

I’ve had it done

It’s not purposeful activity – enablement

When to do it?

•First Reception?

•If not, attrition

Who is going to do it? (staffing)

Who is paying? Hep C/Hep B/HIV?

156

Elimination 2025Let’s do this!

Since April 2019, we have:

• Procured PoC screening tests

• Arranged HITT interventions

• Appointed a national Lead Coordinator

• Recruiting 6 regional coordinators

• Rewritten policy and local operating

policy template

157


We have:

• Those already diagnosed

• The undiagnosed patients

• The funding

• The drugs

• The pathways

What’s missing…?

158


159

[email protected]

Thank you

160

Hepatitis C in community pharmacies

Anja St. Clair-Jones

Consultant Pharmacist, Gastroenterology, Brighton and Sussex University Hospitals NHS Trust

Margaret O’Sullivan

Viral Hepatitis Clinical Nurse Specialist, Brighton and Sussex University Hospitals NHS Trust

Community treatment Engage the Disengaged

END-CMargaret O’Sullivan

Community Specialist Nurse Viral Hepatitis

Fiona Rees

Specialist Pharmacist Gastroenterology

Anja St. Clair Jones

Consultant Pharmacist Gastroenterology

Defining populations of PWID

Former PWID

Current PWID

PWID on OST

Community Services

164

Client

Hospital Services

Substance Misuse Services (SMS) - Project

ITTREAT-research funded

Homeless Hostels

GP ClinicsValid Study-research funded

Homeless Day Centre QNI-grant for testing

kits

Street outreach workers

SMS Treatment data April 2017/2018

• 50 clients treated

• 24/50 (48%) homeless

• 26/50 (52%) current IV drug use

• 15/50 (30%) Alcohol use

• 47 (94%) SVR

• 2 R/R/1 moved away

Ongoing

• 2018/2019-59 clients treated

• 2019/2020-aim 100

Challenges

• Engagement

• Testing

• Medication delivery

• Adherence

• Re-infection

• No funding for retreatment

END-C• Engage the Disengaged to end HCV

– Gilead funded – Initially 5 hostels and 3 pharmacies – One-shop Test and treat – SLAs with LPF development officer– Payment for successful test and treat– PEER MENTOR INVOLVEMENT

• link and engage, re-engage and maintain clients in care• Guide and Support client (emotional and practical

support)• Ensure attendance• Facilitate regular pick up of medication & ensure

compliance

Proposed Pathway Test & Treat• Ideally ‘one-stop shop’ via community

pharmacies– DOT-C, Super-DOT & Manchester pilot

– Referral to hospital for Tx = drop off

• KSS community pharmacies very keen– SLA developed

– Currently ‘secondary dispensing’ not allowed –legislation

• Being looked into

– Community cannot be sold the HepC Tx

• Community pharmacies = testing & referral

How To Get The Meds To These Patients?

• Pick-up from hospital• Homecare

– Need a home/associated community pharmacy

• Taking to community

Homeless Hostel

• Central Brighton locationSeparate street door from main hostelStaffed Mon-Friday

• ‘Amazon drop box scheme’– 8-12 boxes in secured area

Dispensing• Weekly ?• Monthly dispensing and/or

weekly take away strips– Blister-pack/pot

• Depending on patients need

– Filled by hospital staff• Reduced waste• Proxy for compliance

Homeless Hostel

• Considerations:– Safety of the meds

– Ease of access for patients

– Reduced stigma for patients

– SLAs• To protect the hostel & hospital

– Security • Changing key codes/having override system

– Communication between hostel & hospital• Issues, missing meds etc.

Role of Mentorsomeone with lived experience

• Raising awareness

• Screening

• Engagement

• Support adherence

• Psychosocial support

• Communicates concerns

• Part of the team

Breakout session 1 – Community outreach: Identifying solutions

Janet Catt

Consultant Nurse, King’s College Hospital Foundation NHS Trust

Community Outreach

Breakout session (2)

“Solutions – is this finally fixed”

Janet Catt MSc RN

Nurse consultant

Data sharing: A never-ending obstacle?

“Joining the Dots” – LJWG

In order to ensure that people at risk are tested, and that people with

hepatitis C can access treatment, effective data sharing pathways must be

developed between services

Two major obstacles recognised:

1. Confusion about who data can be shared with and under what

circumstances.

2. A lack of computer systems that enable care providers to easily share

patient data.

Ref: Linking pathways to hepatitis C diagnosis and treatment: London Joint Working Group on substance use and hepatitis C (LJWG).

Morley K, Cunniffe D, Finch E (2019).

“I’m getting excited – they are going to sort it, I am going to get treatment”

Data sharing /

confidentiality

Identify gaps in

services

Don’t duplicate testing- make sure

services know what each other is doingMedications- who will

deliver?

Medications need to be

collected within 5 days!!

There are a number of

obstacles to overcome…

“Incentives”

Referral pathway

Logistics: phlebotomy / where to send

blood tests / who will courier bloods?

Is there a “one fixes all” solution?

Can this be realistically implemented?

Does there need to be a separate pathway for different patient groups?

We have endless meetings to discuss testing, referral, treatment pathways etc – but have we learned anything new today?

What do you consider to be the 3 main priorities for a solution focused pathway?

Treated

Breakout sessions feedback

Breakout session leads & discussion

Meeting summary and close

Prof Matthew Cramp

President, British Association for the Study of the Liver

Rachel Halford

Chief Executive, The Hepatitis C Trust

Documents

National Hepatitis C ODN Stakeholder Eventhcvaction.org.uk/sites/default/files/resources/National... · 2019-08-23 · DTS –working with the largest DTS providers to drive organisational