What is a Patient Voices Group?
A Patient Voices Group brings together a range of people who can use their experiences of cleft services to represent the views of the cleft community, providing the patient perspective.
Patient Voices groups act as a point of contact between the local cleft community and the Cleft Service with the aim of maintaining and developing excellence in Cleft treatment and services.
How the Groups Usually Work
Group members meet to talk about their personal experiences, opinions and ideas. There are also usually visits from a member of the local Cleft Team and sometimes other health professionals. Groups are run informally and meet in a relaxed space in either the Hospital or somewhere close by. They are made up of around eight patients and parents.
There are around four meetings a year and the groups are supported by the Regional Cleft Service and CLAPA’s Regional Coordinator or Engagement Officer for the area.
Patient Voices Groups are currently active for the West Midlands Cleft Service and Cleft Net East (Addebrookes Hospital, Cambridge).
Nadine is a member of the West Midlands group, working with the team at Birmingham Children’s Hopsital (BCH):
‘I’ve been involved with the Patient Voices group from the first session. My daughter was born in 2010 with a bilateral cleft lip & palate.. I had already trained as a Parent Supporter for CLAPA and felt that being involved with this group would directly benefit families who receive treatment from BCH. Since being in the group, myself and the other members have raised several points about our experiences during the treatment process, which we felt could be changed and improved.
The group is a great way to meet with others who are going through or have been through the treatment process along with staff from various areas of the cleft team and help improve the future of families affected by clefts at BCH.’
What’s in it for You?
- Personal reward – see a positive change from your involvement
- Meet others like you locally and learn new skills to add to your CV
- Make a difference for people affected by cleft
Aims for the Future
CLAPA aims to work with each of the eleven Cleft Centres across the UK to ensure that there is a minimum of two patient representatives and even better, a Patient Voices group attached to each.
Interested in Getting Involved?
Contact your Engagement Officer or Regional Coordinator. See the Staff Page for contact details.
Other Patient Involvement Groups
There are many ways to get your voice heard as a patient, parent or anyone personally affected by cleft.
CLAPA’s Children and Young People’s Council (CPYC)
The CYPC is made up of 9-17 year olds born with a cleft lip and/or palate. Part of their role at CLAPA is to give feedback to researchers during their four meet-ups each year.
In this short video, they explain how their contribution makes a difference to others like them.
Research Patient and Public Involvement (PPI) Group
A new informal group is currently being formed to give regular feedback to major research projects. This is a joint effort between CLAPA and researchers to connect real people like you affected by cleft to the projects that will change the future of cleft care.
If you’re interested in research and would like to be kept up to date with this group, contact Anna Martindale at [email protected].