Dena Corden-Le Petit Cleft Lip and Palate Association Volunteers

Parent Contact Deputy Chairperson of Stafford Branch Clapa Parent representative for the Cleft lip and palate network board for North West England, the Isle of Man and North Wales (Manchester Hospitals)

Mum to Oliver and Niamh

What is a parent contact? “Someone who can provide support, offer reassurance, help with confidence and ensure a new family can enjoy their baby from the benefit of their own experience.” Parent contact Training 2008

Who do parent contacts work with?  Parents – at any stage of diagnosis and treatment  Family and friends  Clapa Head office  Clapa Branches  Specialist Nurses  Cleft team coordinator  Speech and language therapists  Other health professionals – GP’s & Midwives

Branch Activities Raising Awareness Sponsored events Coffee mornings Fun days Children's Christmas party. Duck race.

Ultimately we want every one to have fun!

Cleft Lip and Palate Network Board for North West England, Isle of Man and North Wales. New role Two parents – representing the parents, carers and children who attend the Manchester and Alder Hay Hospitals. Evolving role – Initial impressions are very positive with active consultation at last board meeting.

In recognition of all our volunteers. A Very Big Thank you!

CLAPA Volunteer, llford. Nazneen Khan

Cleft Lip and Palate Association Branch of the Year!

National Steering Committee Inaugural meeting, 20 September 2008 CLAPA Head Office, London

Improve communication/ the relationship between branches and Head Office and inter-branch dialogue Future meetings focus on improving the services we offer/ how to achieve our goals as CLAPA volunteers Reasons

Barry Hancock, South London & Surrey Andy Till, Aberdeen Natalie Rigg, Bristol Mary Newbold, Cambridge Charlotte Cockburn, Glasgow Vanessa Middleton, Great Ormond Street Naz Khan, Independent Mel and Pete Leslie, Independent Joyce Russell, Merseyside Mary Dawson and Amanda Dunlop, Northern Ireland Dena Corden-Le Petit, Stafford Jane Whittingham and Tracy Wareham, Stoke

CLAPA’s Aims Our reach The role of branches The role of Head Office The realities of running a branch What difficulties do branches face? Expectations Communication National identity and membership Key areas for improvement We discussed:

Regional presence Provide local services - support -awareness raising -fundraising -support for professional team How many activities do branches actually need to provide? Concern around merging branches Role of Branches:

Some unaware of it or unsure how to use it – will use more now that they know the other people involved Branch forum

Hard to maintain interest Hard to attract new volunteers Huge commitment for committee members Difficulties faced by branches

Practical Support Communication Bring branches together Data management Acknowledgement How can CLAPA support its branches?

Parent Contacts and branches need strong relationships with cleft teams The cleft team needs to be aware of local branches and that there may be a number in their region Cleft team needs to have confidence in CLAPA representatives CLAPA should compliment not compete with the Cleft teams Relationship with Cleft teams

NHS distribution Information in the right places and with the right people Information on the parent experience Branch/parent contact details in the free starter pack Press, National Childbirth Trust (NCT) and local mums networks to raise awareness Information

Awareness More biog for each contact Use skills in other areas? Training for health professionals? Parent Contacts

Volunteers need more advice from H.O. Details of insurance and accountability Health and Safety, Risk Assessments

New focus Clarification of roles and available support Tools to improve communication Training Some Outcomes

Annual ‘National Steering Meeting’, combined with a training day Representative(s) from each branch to attend Advisory group(s) to work on specific projects: 1.Re-writing the branch manual 2.Deciding our minimum set of services 3.Deciding agenda for next N.S. Meeting The Future