NHS England (London) Patient/Public/Lay Members on the London Hepatitis C Virus Operational

FEBRUARY 2017

NHS England (London) Patient/Public/Lay Members on the London Hepatitis C Virus operational delivery network Clinical Leads Meeting

We are looking for a patient, carer or member of the public to provide the Patient and Public Voice (PPV) at our hepatitis C clinical leads meeting

Would you like to work with the hepatitis C network to help improve services for people in London?

Do you have experience knowledge or insight into how hepatitis C services work and can you link this to the healthcare needs and experiences of your local community?

Could you share your knowledge and insight with a group of London’s senior health professionals?

Could you question or challenge that group to make sure that patients, carers and community views are considered?

NHS England (London) is seeking to recruit a group of people, acting in a voluntary capacity, to help support the plans for the implementing new models of care for managing Hepatitis C virus (HCV) treatment in London. These new models of care will be established by clinical operational delivery networks (ODNs). Each of the ODNs has a lead Clinician,and every 3 months NHS England holds a forum where clinicians meet up to discuss issues. This quarterly meeting is designed to supports the implementation of the national priorities for managing care .

The overall objective of the network model is to maximise the number of patients who are cured of their Hepatitis C Virus (HCV) infection, using the most clinically effective and lowest acquisition effective options. The London HCV HUB Operational Delivery Network (ODNs) Meeting will support the development of the four ODNs in London to achieve a pan-London perspective that aligns with the National delivery of HCV.

Role outline:

The main purpose of the role is to bring the voice of the service user/public to pan London network discussions. The members will play an active and equal role in NHS England (London) meetings, sharing the decision making in the context of a complex landscape and organisation, balancing a range of competing priorities and pressures.

In general, representatives contributing to ODN meetings will be asked:

To provide a patient-focused and/or carer/family perspective
To prepare for meetings and other events in order to be able to provide informed input
To provide constructive contributions by representing the voice of the patient in discussions.
To contribute any specific subject experience and/or expertise to programme goals
To help NHS England (London) to develop the role of patient/public/lay membership appropriately for future programmes and workgroups
To ensure robust governance systems for HCV ODNs within NHS England (London)

For more information and details of how to apply, please contact:

KasiaWisniewska

Business Co-ordinator

Specialised Commissioning

NHS England London Region

T: 01138070532

Closing date: 14 March 2017

NHS England (London) Patient/Public/Lay Members on the London Hepatitis C Virus Operational Delivery Network Clinical Leads Meeting

Role Description and Person Specification

NHS England (London) is seeking to recruit a group of people, acting in a voluntary capacity, to help support the delivery of Hepatitis C virus (HCV) treatment in London, via established clinical operational delivery networks (ODNs).

HCV is a virus transmitted in blood. It is usually asymptomatic at the time of infection and in about 75% of cases chronic infection develops. Chronic infection leads to chronic hepatitis, fibrotic liver disease, and eventually in some to cirrhosis, end stage liver disease, and hepatocellular carcinoma over 20 to 30 years. The virus was first identified in 1989 and tests for its detection only developed since 1990. The virus persists as multiple different strains (genotypes) each of which has specific treatment needs. In the UK 90% of people have Genotypes 1 and 3.

Effective therapy for hepatitis C will reduce the burden on patients with hepatitis C induced cirrhosis by reducing disease progression and thereby reducing hospital admissions due to the complications of progressive cirrhosis – specifically effective therapy will reduce attendances for variceal haemorrhage, decompensation and development of liver cancer.

Role outline:

In general, representatives contributing to ODNs will be asked:

To provide a patient-focused and/or carer/family perspective
To prepare for meetings and other events in order to be able to provide informed input
To provide constructive contributions by representing the voice of the patient in discussions.
To contribute any specific subject experience and/or expertise to programme goals
To help NHS England (London) to develop the role of patient/public/lay membership appropriately for future programmes and workgroups
To ensure robust governance systems for HCV ODNs within NHS England (London)

Person specification

The personal qualities of a patient/public/lay member are vital in ensuring both the individual and the organisation can benefit from the experience and/or expertise they bring. Ideally, the member should have experience, knowledge of OR interest in Hepatitis C programmes either within the NHS or in other parts of the public sector OR have knowledge of governance and assurance systems with in the public sector. We are particularly interested in recruiting patients previously /awaiting treated with Hepatitis C. The value of the member will also lie in being able to go beyond their own experience to be able to speak about the needs of the patients/target population in general.

In general, representatives must:

Be confident in making the voice of the public heard
Be confident in challenging and holding NHSE(London) to account
Be confident in challenging Clinical Leads
Recognise the need for pragmatic decisions on occasion
Be able to work as part of a team
Have the willingness, interest and ability to learn about Hepatitis C
Be able to deal with complex issues
Maintain confidentiality at all times

Time commitment required:

Attendance at meetings – currently four per year, each lasting up to three hours
Pre-meeting preparation – reading of meeting papers and preparing comments
Telephone conferences with Regional Blood and Infection Lead, to progress patient specific work, for example: news letters.

Frequency of meetings:

Every 3 months

Length of term:

Initially, all representatives will be expected to commit to attending 4 meetings in the first year of appointment. Thereafter, terms of reference for London HCV ODNs Clinical Leads meeting will be reviewed and updated, and a review of the membership will be carried out with a view of extending the roles for up to 3 years.

Remuneration:

This role does not constitute employment and does not attract remuneration. NHSE will, however, pay reasonable out of pocket expenses associated with conducting the required duties of the role. In order to comply with audit requirements, receipts will need to be supplied for these expenses and approved before remuneration can take place in line with the NHS England Expenses Policy.

Document control:

Date written: 28th May 2016

Date approved by: August 2016 London Quality meeting

Date advertised: 14 August 2017