The CS is a resource pool and source for informed patient involvement. It provides the Clinical Networks and other regional healthcare structures with insight, information and views about services and proposed redesign or service change from the perspective of patients and carers. Members of the CS are all living with long- term conditions or are caring for others with debilitating illness. They have current and relevant experience of services and are therefore considered ‘experts by experience’. They are all actively involved with informing programmes and projects, together with reviewing health policy and guidance documents, e.g. Medicine Optimisation, PSC, Accelerated Access Review, Consultant Outliers Report. Meetings are held quarterly with each session focusing on the group’s strategic objectives. Early projects undertaken by the members were, Equality of Access, Awareness & Early Diagnosis and Community Support. Some findings from this work were presented to the Clinical Networks together with other health bodies. Our intentions were to try to influence priorities and workplans.

Guest speakers are invited from across the region’s health services, to talk about topical health care issues, service changes and new programmes and projects. Members are encouraged to learn and share information about programmes they are involved in – this can be many and varied, from active participation on Review Panels with the Clinical Senate to supporting mental health initiatives and operating at executive level within Healthwatch or local CCG patient groups. There are also many disease-specific projects such as one member recently working with medical students at a Society for Endocrinology training day. The CS meetings serve as a vital forum for peer support for these great examples of Patient Leadership, and also to equip members with knowledge and information in order to influence commissioners and decision-makers on service issues.

In summary the CS:

  • Acts as a hub for the regional patient/carer voice both to the Clinical Networks and Clinical Senate and any allied bodies such as Clinical Commissioning Groups and Academic Health Science Networks.
  • Considers issues of strategic importance raised by patients, carers and service users. These are raised from within the network of constituent patient groups, from intelligence gathered through insight data or patient experience surveys, or from any of the statutory bodies.
  • Considers issues raised by Health Care Professionals and the Clinical Networks/Senate.
  • Supports its members as Experts by Experience to work in partnership with healthcare organisations across the region, encouraging the adoption of the Coalition for Collaborative Care Co-production Model.

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