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Lancashire & South Cumbria Hepatitis C ODN Minutes of Operational Meeting

Wednesday 20th February 2019 - 6pm

Salmesbury Suite, MacDonald Tickled Trout Hotel, Preston New Rd, Salmesbury,

Preston, PR5 0UJ

Attendee’s introduced themselves and Dr Gkikas (IG) welcomed everyone to the meeting. Gilead were acknowledged and thanked for their sponsorship of the meeting.

Mark Brine (MB) opened the meeting with a video patient story which was well received by the group. Dr Gkikas (IG) summarised the main points of the differences between interferon and DAA’s and improvements in the patients’ physical and psychological wellbeing. MB informed the group that he was currently considering his options of using the video to spread the message.

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Present

Dr Ioannis Gkikas (Chair) - ELHT Consultant / Clinical Lead ODN

Jane Grassham - ODN project manager

Dr Hatab Consultant ELHT

John Eatough – ODN lead pharmacist (ELHT)

Cathy Fisk - Public Health Development Manager (Blackburn with Darwen Council)

Rebecca Stretch - PHE CLHPT

Carly Buckley - health protection Nurse practitioner PHE North West

Marie Cunningham - Quality and Patient Safety Manager for Health and Justice, (NHS Spec Com)

Vicky Buddo – All age sexual health

Teryll Clinton - Advanced Nurse Practitioner Furness General Hospital (UHMB)

Demi McCreadie - Advanced Nurse Practitioner (UHMB)

Johnathan Occleshaw – CGL

Samantha Watson – CGL

Danielle Hickey – CGL

Mick Bunyan- CGL

Lee Harrington – Senior Public Health practitioner LCC

Sara Hatfield –Clinical Nurse Specialist (LTHTR)

Christine Landon – Lead Hepatitis Clinical Nurse Specialist (LTHTR)

Jenifer Mithoo – clinical Nurse Specialist (ELHT)

Judith Mills Public Health specialist Blackpool Council

Grainne Nixon Consultant Nurse Health Protection PHE

Ken Barnsley – Head of Research Engagement and Intelligence BwD Council

Mark Brine –Drugs line Lancashire

Andrea Coulson – Gilead

David Weir – Gilead

Apologies

Salim Badat - Information Governance Lead (ELHT)

Matthew Sutcliffe - Directorate Manager (ELHT)

Jennifer Wadsworth - Advanced Nurse Practitioner (ELHT)

Karen Sargeson – Clinical Nurse Specialist (ELHT)

Anita Carter - CNS (ELHT)

Leigh Hudson - Service Development Manager (ELHT)

Dr John Keating - Consultant Gastroenterology/Hepatology (UHMB)

Elaine Jones - Advanced Nurse Practitioner (UHMB)

Chris Lee - Public Health Specialist (LCC)

Emily Davis - Public Health Coordinator (Blackpool Council)

Thomas Singleton - Service Manager (BTH)

Michael Rolland – Nurse Practitioner (BTH)

Paul Wilkinson – Virology Lab lead (LTHTR)

Pauline Burnham - CGL

Diane Rapley – CGL

Gifford Kerr – Consultant in Public Health (BwD Council)

Nadene Blakeman - specialty Business manager (LTHTR)

Peter Yarwood - Red Rose recovery

Previous Minutes

The previous minutes of the meeting 21st November 2019 were agreed as correct

Action matrix

The group were updated on all actions – please see below.

The group agreed that the following actions should also be noted - Mapping of homeless numbers across the ODN and alteration of the patient satisfaction survey following patient forum feedback and sharing same with the wider ODN ACTION Jane Grassham (JG)

Clinical Update

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IG gave a presentation (attached) covering numbers, run rates, clinical outcomes after SVR 12, real life data and retreatment.

IG gave an update regarding ELHT including

High DNA rate

Linking Prescription to appointment - this generated some debate regarding the differences across the ODN. JG stated that we should all be aiming to work the same way and be open to innovative practice such as dispensing at the point of contact, home delivery, Nurses dispensing medication. JG agreed to check out the regulations regarding nurse dispensing /carrying medications. ACTION JG

Transportation of patients to clinic – MB explained to the group how he supports clients in Blackpool with transportation.

Peer to peer support. The group discussed the value and success of this support to all appointments and with transportation Lee Harrington (LH) agree to use this pilot as evidence for improvement ACTION LH

Incentives – business case being developed at ELHT. The group agreed that this worked for Hep B and smoking in pregnancy. ACTION MS

Clinics in pharmacies, hostels , salvation army

Raising awareness events – one voice event in Mosques in Blackburn, “ love your liver” roadshow in Preston 18th May 2019 and Blackburn 19th May 2019 both being supported by the hepatology teams

Linking positive test results in sexual health services with the ODN

PHE data – IG explained that there had been a further delay in the release of the data to the provider trusts, and we were waiting for clearance to do so from ELHT Governance department.

Virology Data – We are now receiving data each month (from January 2019) from the Preston virology lab of all new positive HCV RNA patients. JG to discuss, the proposed process under AOB. The same process will then be put in place with the Blackpool virology lab ACTION JG

Prisons- IG explained that we are in receipt of the national data. Marie Cunningham (MC) explained that there are variations across all the prisons within the ODN. Christine Landon (CL) informed the group that although she has 3 prisons within her area she had not received any referrals since before Christmas. CL explained that she had a meeting next week with the health care team at the Prison. MC informed the group that health and justice , although not the health care provider in prisons , is meeting with the ODN management team next week to discuss the way forward ACTION Health and Justice / ODN Management team

New Tender / rate Card – delayed until April 2019

Service update

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JG gave a service update presentation (attached) JG stated that the quarter 3 report had been submitted on t25th January 2019 and that the main focus was improved partnership working, improved case finding and patient communication and experience. JG will distribute the report with an individualised version to all NHS provider partners. ACTION JG. JG highlighted that treatment figures had decreased from quarter 2 and that the ODN had failed the run rate for quarter 3.ACTION ALL

The group agreed that Blackpool was of particular concern - achieving 49% for the quarter. JG to discuss this further with Mike Rolland and offer any support ACTION JG/ MR. Additionally this is to be raise at the ODN Board ACTION LEIGH HUDSON (LH)

JG informed the group that the ODN had failed treatment costs per patient relative to first line treatment cost by 0.4% and that this is currently being validated as one provider trust is still charging VAT.

JG informed the group that the national team had advised that patients should be entered on the registry as soon as they are known to the service and not following the MDT .ACTION ALL. JG agreed to contact the national team as the group believed this system was “set up to fail” ACTION JG

Board Update

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JG gave the board update on behalf of Matt Sutcliffe ( see attached)

The group agreed that Grainne Nixon and representatives from the CCG’s across the ODN are to be invited to the Board ACTION LH

Local provider updates

ELHT – Jenifer Mithoo gave an update on behalf of ELHT (see attached )

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UHMB – Unfortunately had left the meeting at this point as the meeting was running late. JG reported that UHMB had, had the fibro scanner business case approved and that this was now on order, that they continued with innovative practice and had reported that they were experiencing some difficulties with attendance at the Lancaster clinics and were exploring other options .UHMB were in the process of signing Honorary contracts with ELHT so that neck blood training could commence.

BTH – were not represented at the meeting

LTHTR – CL updated the group that pathways with AMU, ED and gastroenterology were working well , however there were issues with Prison and that she was meeting with the health care provider next week. The SMS clinics at both Chorley and Preston had not commenced and it was suggested that the pathway was looked at again . JG to set meeting up with CGL and CL ACTION JG

CGL – Jonathon Occleshaw(JO) gave the following update

Over last 3 months 285 tests

20 positives identified

46 referrals in for treatment

19 started treatment

13 completed 6 completed SVR

Johnathan highlighted to the group that there had been issues with different results from DBST and wet bloods and they were retesting some clients. JO stated that getting medication to clients in some areas of the ODN was proving difficult and that the pharmacies worked very differently. The group agreed that we should all follow the same practice. JO informed the group that they were looking at putting in a funding request for an Acuvein to assist with wet blood taking. JO reiterated the successes of the combined clinic with methadone prescription pick up and that he was attending UCLAN raising awareness with student nurses. JO reiterated the issues around attaining blood samples and external jugular clinic set up.JO informed the group of plans for clinics to set up St Anne’s, and Central Lancs.

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Delphi - advised the group that outreach was now recruited to, they had similar issues to CGL as regards medications, they are aware of a prevalence of 25 patients in one practice and they are producing an action plan and that their staff also took bloods from patients

Sexual health Service – LH gave update on behalf of Sexual health services including how sexual health services can support the process. LH stated that they would look at a risk assessment and raise this at their next strategic meeting, as the service has 40,000 contacts. An information sharing agreement would be required.

Health and Justice - MC and Rebecca stretch (RS) gave an update. Both reiterated that they are not the service provider. RS stated that DBST was introduced in May however the numbers appeared to be slipping. There are 4 prisons in the ODN 2 of which are in the lower quartile. All agreed that the referral to treatment pathway required some work and health and Justice are meeting with the ODN management team on Monday The group were informed that Preston and Wymott prison are part of a pilot run by the Hep C trust providing peer to peer support. The group discuss possible ways of improving communication with all services and how the prison/ probation service may help with patients that are lost to follow up .

PHE data – was discussed as part of the clinical update. IG reiterated that ELHT had reduced the numbers by 50%

AOB

Monthly Virology Data

JG explained the proposed process (see attached)

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The group requested that the plan includes the number of times contact with the patient should be attempted and that the GP should be informed again if the provider cannot make contact with the patient. The process will be updated to reflect this and distributed ACTION JG

As the signed MOU is in place the group agreed to share the data as soon as possible ACTION JG as this was in the best interest of the patient.

JG agreed to pull together SOP and distribute for feedback - ACTION JGi

The group felt that the data should be shared without the SOP, that treatment should not be delayed for these patients and that this would help with case finding. ACTION ALL JG informed the group that she did” test” the monthly virology data with UHMB and on their list of 10 they already were aware of 9 leaving just 1 patient to be contacted, so the numbers are quite small.

At the close of the meeting IG thanked gilead for their support of the meeting and continued support to the ODN

Date and time of next meeting

Wednesday 22nd May 2019, 1800 hrs – Venue to be confirmed

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|Agenda item |Action required |Responsible |Date |Comment / update |

|4 21/11/18 |Patient representative or patient story at every ODN Operational|JG |Continuous | |

| |meeting | | | |

|5 |Minutes and action matrix to be made available for every meeting|JG |Continuous | |

|21/11/18 | | | | |

|8 |Send each partner provider a copy of the quarterly report |JG |Continuous |Complete- JG to send Q3 |

|21/11/18 | | | | |

|8 |Send each partner provider a copy of their individualised |JG |Continuous |Complete-JG to send Q3 |

|21/11/18 |quarterly report | | | |

|8 |Provider partners to send ODN a list of personnel; they wish |All |19/12/18 |Nil received action to remain |

|21/11/18 |reports to be sent to | | |open |

|8 |UHMB lack of fibroscan to be escalated to ODN board |IG/JG |03/12/18 |Complete-on order- remove |

|21/11/18 | | | | |

|11 |Following update distribute peer review action plan with minutes|JG |28/11/18 |Complete |

| | | | | |4

20/02/19 |Mapping of homeless numbers across the ODN

|JG |31/03/19 | | |4

20/02/19 |Alter patient satisfaction survey and Share with ODN |JG |31/03/19 | | |5

20/02/19 |Feedback re regulations re nurses carrying / dispensing medications / NMC |JG |31/0319 | | |5

20/02/19 |Transportation support |LH |31/05/19 | | |5

20/02/19 |Incentives business case |MS |19/04/19 | | |5

20/02/19 |Roll out process for new positive HCV RNA from virology lab at Blackpool |JG |31/03/19 | | |5

20/02/19 |Forward plan Prison service |Health and justice / ODN management team

Health and Justice / ODN Management team |04/03/19 | | |6

20/02/19 |Improve run rates / case finding |All |31/03/19 | | |6

20/02/19 |Blackpool run rate - discuss this further and offer any support

|JG / MR |31/0319 | | |6

20/02/19 |Patients to be entered onto registry as soon as known to the service |ALL |Immediate | | |6

20/02/19 |Contact national team as this appears to be set up to fail |JG |31/03/19 | | |8

20/02/19 |Meeting CGL and LTHTR |JG |31/03/19 | | |8

20/02/19 |Grainne Nixon and representative of all

CCG across the ODN to be invited to the board

|LH |18/03/19 | | |10

20/02/19 |The Monthly virology data process to be

Updated and redistributed |JG |22/02/19 | | |10

20/02/19 |Share monthly virology data for Jan 2019 |JG |22/02/19 | | |10

20/02/19 |SOP – distribute for feedback |JG |22/02/19 | | |10

20/02/19 |Referrer / Patient contact from monthly virology data |ALL |ASAP | | |

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