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 manual2. Deciding our minimum set of services 3. Deciding agenda for next N.S. Meeting

The Future