Involving patients and carers or "service users" recognises that people whose lives have been affected by cancer (patients, carers or those close to them) can provide a unique expertise and perspectives on cancer care services through their experience of living with and managing the disease. Patient and Public Involvement is about having a structure where people affected by cancer and health professionals can work together to improve cancer services. The impetus for patient and care involvement in Cancer Services has been stressed in many policy documents such as:
There is also statutory guidance for NHS organisations on the involvement duties under the 2006 NHS Act "Real Involvement : Working for people to improve health services"
ASWCS has signed up enthusiastically to the principles of patient and carer involvement and the Network is actively seeking the views of patients and carers in the development and evaluation of local cancer services.
The following have been identified as the benefits of user representation on the Network Groups:
- Provides a patient/carer perspective, enabling Group members to see how it feels to be on the receiving side of the service.
- Reflects the Network's commitment to patient and public involvement and ensures that user representation is not just a ticking boxes exercise.
- Realigns misconceptions from both the public and professional point of view.
User Representatives can also:
- Enable users to have more information about cancer services, its complexities and constraints
- Enable services to be reveiwed and developed to meet the needs of users
"Feedback from patients is one of the most powerful tools available to the NHS to help improve services which is why the Duty to Involve has been strengthened. The NHS is a public service so it is only right that the public should have their say on how the service is shaped" (Ann Keen, Health Minister on the Duty to Involve Guidance, 30 October 2008).