Make sure your opinion is included in decision making processes.
Help ensure patients get the hepatitis C treatment they are entitled to.
And have your voice heard!
To organise giving treatment for hepatitis C in England, the NHS has divided the country into twenty two area networks. These networks are called ‘Operational Delivery Network’ (ODN). They are a new way of organising how and when people receive treatment. Each network will have a lead hospital, a hub, that will support spokes (smaller hospitals or clinics). It is expected that each of the networks will organise regular meetings with key people within their area, to monitor progress and address any issues. Key people will include people who have been affected by hepatitis C.
We want to ensure that each network has a strong patient presence and voice that represents all of the groups affected by hepatitis C, including the South Asians, people who contracted the virus through infected blood products or injecting drug use.
In each of the network areas, we are organising a patient council. There will be two main objectives for the Councils:
To represent the patient voice at network meetings. Providing the patient experience, raise concerns and discuss issues.
To provide patient perspective and representation at a local and governmental level. This will include a variety of activities including feeding into government consultations, speaking in public and raising awareness.
Our hope is that the patient councils will be autonomous, setting their own agendas and providing the true patient experience.
We will bring all the groups together and hold a patient conference, support groups and individuals in all activities and advocate for patient voices to be heard in all arenas.
Expenses will be provided and training that will include:
Influencing skills
Public speaking
Media training
To get involved in one of the patient councils or to just find out more about their work please email activism@hepctrust.org.uk