Opportunity: Join the Cleft Development Patient Engagement Group
Are you interested in NHS cleft care services in the UK? Would you like to have a say about how cleft services are provided and developed?
In 2022, CLAPA supported the Cleft Development Group (CDG) to develop a Patient Engagement Group (PEG) to ensure the patient voice was heard within CDG meetings.
The Cleft Development Group (CDG) is a collective group with representation from all the cleft teams within the UK. Its purpose is to represent all those involved in cleft care, and work with all, to ensure the highest quality of cleft care in the UK for all patients who need it.
The Cleft Development Group’s Patient Engagement Group (CDG PEG) has evolved over the last three years, with the members playing a large part in developing the format and function. They are currently inviting applications for new members.
Why is it important to get involved?
It’s important for cleft services to hear directly from the people who use its services. This way, services can be shaped in a way that works better for them.
“I have been a member of the CDG PEG for two years and it is a privilege to take part in the conversation about the development of cleft treatment within the NHS. As patients, we have a unique perspective on what cleft teams do, and I’m delighted to report the CDG listens to our thoughts and really values our input.”
Member of the CDG PEG
What does the CDG PEG do?
- Helps to effect change in NHS Services.
- Discusses patient/carer relevant items for the CDG meetings.
- Shares views of lived experience from a patient/parent perspective.
- Gathers and represents the views of the cleft community.
- Meets with cleft team professionals.
Interested in joining?
If you are
- An adult who was born with a cleft or
- a parent/carer of a child who was born with a cleft or
- a grandparent or other relative of a child who was born with a cleft.
AND
- Live in the UK and
- able to attend an online meeting on the first Wednesday of every month from 7:30pm to 8:30/9:00pm.
Then we’d love to hear from you.
How to apply
The CDG is keen to have a diverse group of voices and welcomes people to apply regardless of gender, age, disability, ethnicity or sexuality.
In addition, they would like a mix of cleft lip and/or palate experience, and a geographical spread – encouraging people from all over the UK, including Northern Ireland, Scotland, Wales, England, and the islands, to note their interest. If you feel you are underrepresented within CLAPA and/or cleft services, we would also love to hear from you.
If you are interested in joining the CDG Patient Engagement Group, please submit an expression of interest via the online form.
We can also accept an expression of interest via a video call or a voice note emailed to us. Please email [email protected] to arrange.
FURTHER INFORMATION
The CDG is responsible for guiding all aspects of the delivery of cleft care in England and Wales and, when asked, by Scotland and Northern Ireland. It gives advice to cleft centres, NHS bodies and Trusts, and the Departments of Health in England and the devolved administrations. The CDG also has ultimate responsibility for the running of the CRANE database, which collects information about all children born with cleft lip and/or palate in England, Wales and Northern Ireland.
Further information about the CDG can be found here: https://www.crane-database.org.uk/resources/the-cleft-development-group/
