1.Ensure that the voice of the service user, patient, carer and family is heard by sharing individual experiences and working together as a cohesive group of Expert Parents to drive change and influence improvement to equity of service.
2.Champion the diversity of people’s views and not just represent our own experiences, draw on the views of other groups and communities and offer constructive advice to challenge and inform health and care professionals and provide ‘critical friend’ challenges where appropriate to NHS partners.
3.Develop the Expert Parent Forum’s vision for improving Palliative and End of Life care for babies, children and young people both regionally and nationally, and provide leadership and support to statutory and non-statutory health care organisations, support delivery of sustainable projects and work in partnership with our SW Children’s Palliative Care Strategic Clinical Network partners.
4.Support national strategic priorities for palliative and end of life care for babies, children and young people and the NHS vision for a long term plan, and work collaboratively to achieve that plan.
5.Attend meetings, support education, participate in service redesign and improvement initiatives and use personal knowledge and experience to offer constructive advice about the impact on patients, carers and families of the issues being discussed by the SW Children’s Palliative Care Strategic Clinical Network and other stakeholder groups by way of reading papers/proposals, presentations or engagement with NHS partners from across the regions.
6.To promote the EPF and be known as an effective resource for the region and to welcome and encourage new parent members who are keen to impact change, share knowledge and recognise that we are a small group with a strong voice.
7.To meet virtually on a regular basis and share news and progress on our work as a group and to update the SW Children’s Palliative Care Strategic Clinical Network on progress and discuss future involvement opportunities.
8.Patient Public Voice Lead to provide monthly “Newsletter” on the group’s activities by e-mail and “keep in touch” with members either face to face, e-mails or via Teams and to welcome new members once introduced by the SCN team.
9.SCN leads to ensure members of the group are remunerated for the hours they work, in a timely manner.