The South West Parents Group
Who are we?
The parent group is made up of parents & carers who have lived experience of caring for a child that has been admitted to one (or more) of the 12 neonatal units within the South West of England within the last 8 years.
There are 10-15 group members from across the South West at any one time and we regularly seek to encourage new interest and membership. We aim to ensure that, across the group’s membership, experiences of all 12 of the SW neonatal units are represented.
The group is chaired internally by parent group members based on a rolling system of 3 meetings per member, this is voluntary role and where no volunteers are available the network team will provide support. All administrative roles are covered by network team members.
What do we do?
The aim of the parent group is to support the work of Neonatal Care Services across the South West of England by:
- Providing parent experience and perspective to support the development of new and ongoing initiatives across the SW network
- Representing the patient, parent and family voice at Network Executive meetings and on regional service reviews
- Developing innovative ideas to support families experiencing neonatal care across the SW network
- Reviewing relevant network documents to ensure they are addressing family requirements appropriately and are accessible to all
- Working closely with the SW neonatal networks charity partner, the NICU foundation, in supporting charitable initiatives that aim to improve the experience of families with babies in a SW neonatal unit.
- Support the network team to improve consistency of care and access to relevant services across the 12 SW neonatal network units from the parent / carer perspective
To achieve the above objectives parent group meetings will follow a standard agenda that covers:
- Updates and discussion around ongoing and new initiatives that the network units and the network team are involved in based on minutes from the latest Network Advisory Group meeting.
- Updates and discussion around ongoing group projects
- Topical input from regional experts to support new ideas or provide further context to network initiatives
- Discussion of new ideas and projects for the parent group to support and work towards
At any one time 3 members of the parent group also sit on the Network Executive Board, this provides a forum for the group to provide feedback on network initiatives and highlight the work of the parent group at the highest level within the SW network.
Parent Group Meetings and Communications
Meetings are held 3 times per year based on dates of the latest Network Advisory Group meeting. All meetings are arranged and facilitated by the SW neonatal network team. Meetings can be day-time or evening and are arranged using an online polling system to ensure highest possible number of attendees at each meeting.
A private parent group members Facebook and WhatsApp group is used for communications between meetings to, share details regarding upcoming events and meetings, highlight relevant documents for review, request parental feedback on specific issues, to provide updates on ongoing network projects and as a forum for members to share and discuss ideas.
Terms and conditions
Membership is voluntary and there is no obligation to remain part of the group. Written notice is requested if you intend to leave the parent group so that your details can be removed from the data base for data protection reasons.
Due the potentially emotional nature of this work we recommend that parents wait at least 12 months post discharge before volunteering for the Network.
Find Out More / Join
To find out more about the group please download our Terms of Reference document.
If you are interested in joining the group please complete our Information Sheet and return to firstname.lastname@example.org. Alternatively you can complete the form below with your name and email address and a member of the SW neonatal network team will respond to you as soon as possible.