Workshops 2 15 3 15 North Central ODN

Workshops, 2. 15 -3. 15 North Central ODN, led by Professor William Rosenberg, Royal Free: Inreach treatment to prisons Barts ODN, led by Professor Graham Foster, Barts Health Trust: Linking data to help hepatitis C patients access treatment West London ODN, led by Dr Matthew Foxton and Dr Suman Verma, Chelsea and Westminster: Engaging the undiagnosed STHep. Net, led by Dr Dan Forton, St Georges, and Dr Mary Cannon, Kings College: Pathways from drug and alcohol services

North Central ODN: In-reach to prisons PROFESSOR WILLIAM ROSENBERG ROYAL FREE

LJWG FAST TRAC

Aim Reducing the time from referral to cure of HCV Phase I: analysis of current practice Phase II: ◦ implementation of initial plan for rapid stratification ◦ Action research – modification of pathway in response to learning

Baseline Learnings Pre ‘Bluteq” ◦ Great variation both between and within clinician practice ◦ Major delays attributable to waiting for investigation results ◦ Confounding delays related to availability of oral options for: ◦ GT 2 and GT 3 ◦ Rate card issues Post Bluteq ◦ NHSE rationing

Initial Intervention Investigations before first appointment Patient uptake variable USS and Fibroscan availability main challenge All bloods including ELF testing on a single draw reduces time, costs and visits

London Joint Working Group NCL PRISON INITIATIVE

Pentonville Pathway Linking BBV Opt-Out to HCV management All HCV RNA Positive patients enter pathway Pathway aims to classify infection and stratify disease All patients referred to MDT for care plan Anticipate majority referred on and minority treated during sentence

Lessons Learnt……. . so far BBV Opt-out not working well Adoption of pathway dependent on ◦ ◦ Awareness Comprehension Ownership Link to laboratories Delivery of pathway ◦ Requires commitment and attention to detail ◦ Rapid transit ◦ Is possible

Necessities Training and engagement ◦ Assume nothing ◦ Understand the organisation Report and monitor outcomes Maintain a record

Wider View Nature of the prison ◦ Remand, long stay etc Healthcare provider ◦ NHS, Contractor Attitude of governor Hierarchies and “anthropology”

Workshop Outcomes Participants hailed from London boroughs and Surrey. Key learnings from the workshop discussion: ‘Opt-out’ testing is not always worded correctly to encourage uptake Greater education is needed among inmates and officers about importance of testing Prison health teams should be engaged on blood borne virus (BBV) testing There is significant fragmentation in the system

Workshop Outcomes In order to achieve this, prisons need: Engagement with multiple stakeholders – a joined-up approach To map how their organisation fits into the prison health pathway to ensure continuity of care and reduce fragmentation Use peer workers to transfer information about hepatitis C treatments to inmates Medical records should be transferred to primary care on release

Barts ODN: Linking data to improve access to treatment PROFESSOR GRAHAM FOSTER BARTS ODN

Workshop 2: Barts ODN Current Developments - The East London Scene Graham Foster Barts Health/QMUL

The East London Mosque Europe’s largest Mosque

The East London Scene • Prisons • Immigrants • Drug users • Sexual health

The East London Scene Prisons • East London has no prisons! • Therapy in prison is governor dependent • We ALL need to lobby for better treatment access

Referrals of Prisoners on Therapy • • Prof Rosenberg emails me I email my nursing team Patient is sent an appointment Patient does not show up • Can we think of a better way of doing this?

The East London Scene • Prisons • Immigrants – we have lots! • Drug users • Sexual health

Viral Hepatitis in People from Pakistan living in East London HCV is always Genotype 3 Uddin et al 2009 JVH

Testing Immigrants for HCV • A ‘no-brainer’ • (NICE approved, must be cost effective, must be easy to do)

Hep. FREE Community screening for HCV • Invited screening of first and second immigrants aged>18 in 50 GP surgeries in Bradford and London • Total of >12, 500 patients screened • 4 GP practices in Tower Hamlets participated • 417 immigrant patients screened in Tower Hamlets at – – Jubilee Street Stroudley Walk St Andrews XX Place

Hep. FREE Community screening for HCV 5 Prevalence of disease in screened populations (%) 4. 5 4 3. 5 3 2. 5 2 1. 5 2. 3 1 0. 5 0 2. 1 1. 7 1. 1 0. 9 0. 600000000000001 0. 3 18 -29 30 -39 1. 2 40 -49 1. 4 1. 3 1. 1 Age groups 0. 8 50 -59 0. 700000001 60 -69 1. 5 0. 9 0. 600000001 >70

Hep. FREE Community screening for HCV Prevalence of disease in the screened populations (%) 5 4 3. 5 3 2. 5 2 1. 5 1 0. 5 2. 2 1. 1 0. 600000001 0 First Generation 0. 3 Second 0. 3

Hep. FREE Community screening for HCV • Total Prevalence – 0. 48% viraemic Hep C – 2. 14% Hep B positive • Countries of origin: Pakistan/Bangladesh/Poland/Somalia

Testing Immigrants • Not as easy as it first appears • Early days but likely to be worthwhile ONLY in those born abroad (? test those >40 years old)

Testing Immigrants • Tower Hamlets have introduced funded screening for all immigrants from 5 countries over the age of 40 • Newham are doing nothing

The East London Scene • Prisons • Immigrants • Drug users – variable Newham, no interest, Tower Hamlets interest but challenges • Sexual health

Drug Users in Tower Hamlets • NHS nursing team • Full provision of care • Offer HCV testing and therapy

Drug Users in Tower Hamlets • NHS nursing team • Full provision of care • Offer HCV testing and therapy • No one comes to my out reach clinic!

Drug Users in Tower Hamlets • NHS nursing team • Full provision of care • Offer HCV testing and therapy • No one comes to my out reach clinic! • We are now trialling direct nurse initiated therapy

Drug Users in Newham • Good luck

The East London Scene • Prisons • Immigrants • Drug users • Sexual health

Sexual Health • Sexual health have money for testing • HCV is a sexual disease • We are doing more and more testing in the sexual health service

East London The need for data • Data has provoked a response and led to a marked improvement in our service • We have gaps in service provision (Newham!) but without data we do not have levers to elicit change • Data is Power

HCV in East London • Borough dependent • Some triumphs, some failures • Lets share our stories and learn what works and what does not

For discussion… • What data is available to your service for people who have hepatitis C? • What data do you produce in your service for people who have hepatitis C? • What additional information would help you to help service users to be tested and access treatment for hepatitis C?

For discussion… • Drawing on the data that is available, how can we improve data linkage of hepatitis C databases across London?

Discussion: What additional information would help you to help service users to be tested and access treatment for hepatitis C? Ø Data ‘sells’ why to develop services so to get improved service delivery we need data. Ø Legality and information governance makes it hard to transfer information where it needs to go. Ø Reduce costs by accessing information on repeat testing. Reducing the numbers of people tested more than once when their status is already available in another data set. Ø Links are needed through the virology labs so data on patients status can be fed back and linked to other data sets. Virology labs have data to share. Ø Run rates have driven innovation as ODN’s have a goal to achieve which links to funding. What is measured is likely to get done.

Discussion: Drawing on the data that is available, how can we improve data linkage of hepatitis C databases across London? Ø Sexual Health clinics are receiving patients already and this is a way to access testing and referral. - they have the resources, the skill set and capacity, however the service is anonymous so cannot share data. Ø Commissioner: the funding for substance use in Local Authority causes problems. - payment by results, not block payments, cuts within sexual health, cuts in drug services, so no money for improving data bases and linkage programmes. Ø STHep. Net – mapping GP’s testing for HCV by postcode, identified big gaps in South London, so mapping on a wider scale could be useful for London.

West London ODN: Engaging the undiagnosed DR SUMAN VERMA, CHELSEA AND WESTMINSTER DR MATTHEW FOXTON, CHELSEA AND WESTMINSTER

The current developments, successes and challenges in the ODN DRS MATTHEW FOXTON AND SUMAN VERMA ON BEHALF OF WEST LONDON ODN

West London ODN Imperial Chelsea & Westminster West Middlesex Hospital Hillingdon Hospital North West London Trust (Ealing, Central Middlesex and Northwick Park)

rm Bart in s gh am Br i Ch stol Gr es ea hi r te r M Eas e t an er c n Hu hes m ter be rs id e La Ken nc t No as rth C Le hire en ic tra es t NE l Lo er & nd C on u No mb tti ria ng h S T am ha m e S Y s or k Su s rre Su y P ss Th en ex am ins es ula V al le y W W es ess t L ex o W nd es on t Y or ks Bi 10. 00 Mature Service 9. 00 8. 00 7. 00 6. 00 5. 00 4. 00 3. 00 2. 00 1. 00 0. 00 %age of patients treated in 2015 -16 Run rates for 2016 -17

Waiting list for HCV Rx in West London

Impact of increasing run rate Number currently ODN approved %ge of total waiting list OCT NOV DEC JAN FEB MAR Previously allocation 50 50 50 51 51 51 303 Additional Slots 24 24 24 25 25 24 146 Total Slots 74 74 74 76 76 75 449 31 31 30 31 32 31 186 29 29 29 30 30 30 177 11 11 12 12 70 3 3 2 2 16 74 74 74 76 76 75 41. 5% Imperial 222 39. . 5% C&W 208 NWLH 83 Hillingdon 18 15. 5% 3. 5% 100% 531 449

HCV Ab testing at Imperial Labs Apr 2010 – Jan 2017 n=7143 Unknown, 245, 4%External, 150, 2% C&W, 2534, 37% Imperial, 2146, 31% WMH, 241, 3% GP, 1573, 23%

St Mary’s Outreach Offered assessment but DNA’s appts x 2 20 Assessed and awaiting MDT approval 7 MDT approved awaiting start date 33 Given start date but DNA’d start 6 Started but dropped out before completing treatment 2 Currently on treatment 10 Completed treatment awaiting SVR 12 10 Achieved SVR 12 43 Null Responder 1 Died 2

A & E testing – C &W Pilot study HIV testing in A&E established 500 samples analysed anonymously for HCV Ab and HBs. Ag 15 (3. 0%) were anti-HCV Ig. G positive 8 (1. 6%) HBs. Ag positive. None was positive for both tests. Bradshaw D et al HIV Medicine. 17(): 44, APR 2016

Seroprevalence of anti-HCV Ig. G for attendees of urban emergency departments and for national populations in selected European and North American countries ED Sw an y itz er la nd UK (1 )* UK (2 US ) (1 )* * US (2 ) rm Ge Ca na da 12 10 8 6 4 2 0 Bradshaw D et al HIV Medicine. 17(): 44, APR 2016

Proportion of eligible ED attendees tested for blood borne viruses 100% 90% 80% 70% 60% 1 13 50% 11 18 40% 48 43 31 34 57 47 33 34 31 11 5 4 7 3 39 50 53 63 10 19 12 3 4 6 9 2 5 3 3 126 154 159 175 150 152 123 147 105 122 137 129 126 141 152 121 120 143 188. 6666667 183 233 209 230 203 205 170. 333333 89 84 27 6 6 16 209 60 8 12 73 88 77 94 85 92 97 77 71 65 65 84 105 120 121 109 120 118 91 131 126 115 92 56 17 12 8 8 15 4 3 8 4 10 172 116 10% 38 69 30% 20% 8 9 1 2 3 4 5 6 7 8 9 10111213141516171819202122232425262728293031323334353637383940414243444546474849505152535455 BBV Tests

Results 88 /8216 (1. 1%) had reactive / equivocal HIV Ab test 13 new diagnoses 119/6921 (1. 7%) had positive HCV Ab 17 newly positive tests : 5 were HCV RNA positive 36/ 6921 (0. 5%) had positive HBs. Ag 10 new cases

South Westminster Clinic Set up between primary care, Public Health and C&W Every 8 weeks At SWC – 500 m from Arneway Street Hostel DNA rates >80% No phlebotomy Portable Fibroscan

SWC – Things I’ve learnt 1. Engage keyworkers 2. Run the clinic in the afternoon 3. Traditional OP set-up doesn’t work 4. Be flexible 5. Choose your 1 st treatment patient wisely

Needle exchange pharmacies in London

HCV Ab testing Data obtained from data warehouse 1/1/16 – 30/4/16 5143 HCV Ab tests 151 positive (2. 9%) – 54 new positives (1%) 90% seen in GUM clinics 20/54 HCV RNA negative / not done

HCV Ab testing 73 patients with positive HCV RNA SVR On treatment Died Engaged not treated Not engaged Treated (outcome unknown)

NOT ENGAGED NOT TREATED 13/17 have HIV (? Care elsewhere) 10/22 on waiting list 1 emigrated 4 treated elsewhere 1 DNA 2 admin errors 7 mild disease 1 patient choice

‘Engaging’ the ‘undiagnosed’ UNDIAGNOSED ENGAGING Patient at risk? Patient Tester ◦ HCV Ab positive, RNA unknown Referrer Patient ◦ Ab and RNA positive Treater

What would your ideal service look like? Patients at risk? Testing ◦ Mouth swab, Finger prick, NPT for RNA, genotyping Linkage into care ◦ Referral pathways - standard vs non-standard Assessment ◦ Fibroscan vs others Treatment

1) What examples of active case finding of people who have HCV are happening in your service? 2) Where in your local community are there people who may be undiagnosed?

1) Drawing on the learning from the ODN, how do we engage people who do not know they have hepatitis C? 2) How do we help people in needle exchanges and those who are homeless to engage with hepatitis C testing and treatment in London?

Discussion: What examples of active case finding of people who have hepatitis C are happening in your service? Ø Drugs services, although poor uptake in some. How you approach people is key and peer to peer works very well ØThere is an enhanced payment system in some DAATs which incentivises testing ØIncreasingly in prisons, e. g. Wandsworth and Brixton ØPathway teams are supporting opportunistic testing of homeless people when admitted into hospital and where logistics allow ØNurse clinics that allow walk-ins are excellent

Discussion: Where in your local community are there people who may be undiagnosed? ØSex workers ØMSM: we could learn a lot from the approach towards SH and HIV at clinics such as Dean Street ØSouth Asian community – possibly best accessed through primary care ØPWIDs What more can we do? ØNeed clarity of referral route from DAATs and good peer support. Need to allow walk-in appointments to clinics and flexibility ØNeed to connect IT systems between DAATs, primary care and secondary care. For example, Pathway are working on EAMIS. We should challenge NHS Digital to assist.

STHep. Net ODN: Pathways from drug & alcohol services DR MARY CANNON, KINGS COLLEGE DR DAN FORTON, ST GEORGES

STHep. Net ODN @ LJWG September 26 th 2017

ODN Referral Pathway Map Croydon Turning Point St John’s Wandsworth HMP Wandsworth Queen Mary’s Hospital

Total patients treated 16/17 1000 950 776 800 614 608 600 554 527 500 446 400 352 268 300 774 695 689 700 491 Sum of YTDPLAN 416 Sum of YTD ACTUAL 320 243 189 174 200 100 870 863 900 126 97 65 63 0 1 2 3 Trust GUY'S AND ST THOMAS KING'S COLLEGE HOSPITAL LEWISHAM AND GREENWICH ST GEORGE'S UNIVERSITY HOSPITALS Grand Total 4 5 Apr 12 23 7 23 65 6 May 1 7 4 20 32 7 Jun 15 33 6 23 77 Jul 6 36 7 20 69 8 Aug 18 32 14 13 77 • 91. 5% of prescribed run rate – End of year 9 Sep 10 47 8 31 96 10 Oct 7 45 2 21 75 Nov 13 28 9 13 63 11 Dec 12 27 10 11 60 12 Jan 14 39 7 21 81 Feb 4 41 8 26 79 Mar 17 37 8 34 96 Totals 129 395 90 256 870

Prioritisation of patients Percentage of treatment starts based on severity of liver disease over time AUG 15 - MAR 17 - STHep. NET 100% 90% 80% 70% Cirrhotic Compensated 60% Cirrhotic Decompensated 50% Non-Cirrhotic 40% Linear(Cirrhotic Compensated) 30% Linear(Non-Cirrhotic) 20% 10% 0% May-15 Sep-15 Dec-15 Mar-16 Jun-16 Oct-16 Jan-17 Apr-17 Percentage of treatment starts based on severity of liver disease over time AUG 15 - MAR 17 - STHEPNET 100% 7. 50% 90% 8. 59% 29. 58% 80% 49. 44% 70% 69. 29% 60% 50% 77. 50% 76. 56% 86. 72% 40% Cirrhotic Decompensated 68. 54% 48. 33% 20% 25. 31% 15. 00% 0% Q 2 -15/16 4. 69% Q 3 -15/16 Non-Cirrhotic Compensated 30% 10% 76. 50% 1. 88% Q 4 -15/16 2. 22% Q 1 -16/17 19. 00% 21. 48% 5. 39% 4. 50% Q 2 -16/17 Q 3 -16/17 1. 95% Q 4 -16/17

Looking forward – 5 year plan Aim To improve liver health within the south London population, through maximising uptake and completion of HCV treatment, to cure more people of infection and to prevent onwards transmission.

STHep. Net 5 year plan STHep. Net Objectives 1. Comprehensive testing for Hepatitis C. 2. Direct access to effective care and treatment for any person with a diagnosis of Hepatitis C. 3. As a result, reduced transmission of Hepatitis C in the south London population.

STHep. Net 5 year plan Improving access to Hep C Treatment • Education of high risk groups and key workers to promote testing and positive messages around treatment. • Continued diagnostic innovation and provision of rapidturnaround diagnostics in the community. • Direct linkage from testing into community-based treatment. • Provision of increased peer support. • Appropriate infrastructure to treat the prison population.

SWL outreach locations • Queen Mary’s Hospital, Roehampton - 2013 – Consultant/CNS – Referrals from Kingston, Twickenham, Richmond, Wandsworth drug clinics • St John’s Therapy Centre, Clapham with Wandsworth CDAS – 2014 – CNS • Turning Point Croydon – 2017 – Consultant/CNS/BBV nurse • HMP Wandsworth – 2007 – CNS/BBV nurse • Nelson Hospital, Merton - 2017 – CNS

Facilitating Outreach • • • Proactive commissioning Enthusiastic, proactive drug services (staff, management, clients) Enthusiastic, non-judgemental providers Continuing education at every level Involvement of BBV staff and key workers in case management Enabling finance Enabling logistics – bloods, Fibroscan, pharmacy Novel diagnostics and monitoring – capillary blood Client confidence, peer referral

Capillary blood testing • 100 -500 micro. L • HBV/HCV/HIV serology and HCV VL/genotype Opt-out testing at HMP Wandsworth

SEL Outreach – Drug & Alcohol • • • BBV screening - BBV nurse assistance CNS led Mobile Fibroscan MDT discussion Meds couriered to centre every four weeks – set up by pharmacy Parallel Information Campaign – poster advertising services • Lorraine Hewitt House, Lambeth – 21 completed treatment, 2 undergoing treatment • CGL, Southwark – 13 completed treatment, 6 undergoing treatment • Shared care GP practices

SEL Outreach – Prisons Annual Prisoner Flow (PHE 2013) Belmarsh Brixton Feltham Isis Thameside Wandsworth 2213 1014 1294 514 3253 4384 High Security Cat C Trainer YOI Local

SEL Outreach – Brixton Prison • Opt in dry blood spot testing • CNS led • Working group convened July 2017 – meeting with Regional Manager Health & Justice • 10 referrals since August 2017 – 3 undergoing treatment, • Isis young offenders unit/ Belmarsh/ Thameside – (DBS testing) – Referral to QEH Woolwich

SEL Outreach • LJWG Pharmacy testing pilot • Pharmacy testing - oral swab – 200 patients in South London • Referral pathway to King’s • Peer education co-ordinator • Network of volunteers in each of the substance use centres – – Lambeth, Southwark, Lewisham, Greenwich, Bexley, Bromley Training / workshops • Run workshops /education / screening and treatment • Linkage to care – bus tickets / peer support

SEL Outreach • Primary Care – Data. Net in Lambeth and EMIS data in Southwark – Hep. Care for SW London (providing a nurse to go to GP surgeries to identify patients and link into treatment) • Emergency Department Pilot – Screening and linkage to care • Antenatal Pilot – Screening and linkage to care

STHep. Net ODN @ LJWG September 26 th 2017

Workshop discussion What can we do to improve pathways from drug and alcohol services? ØMore specialist staff across the patient pathway ØIncreased treatment on site as services ØBetter joint working across boroughs – patient pathways can cut across these