National Steering Committee why, when, where, who, what we talked about. What we are bringing forwar

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Dena Corden-Le Petit

• Cleft Lip and Palate Association Volunteers

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• 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)

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Mum to Oliver and Niamh
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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

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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 GPs Midwives

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Branch Activities

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

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Ultimately we want every one to have fun!
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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.

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

• CLAPA Volunteer,
• llford.

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Cleft Lip and Palate Association
Branch of the Year!
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National Steering Committee
Inaugural meeting, 20 September 2008 CLAPA Head
Office, London
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Reasons

• 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

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

• CLAPAs 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

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Role of Branches

• 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

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Branch forum

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

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Difficulties faced by branches

• Hard to maintain interest
• Hard to attract new volunteers
• Huge commitment for committee members

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How can CLAPA support its branches?

• Practical Support
• Communication
• Bring branches together
• Data management
• Acknowledgement

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Relationship with Cleft teams

• 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

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Information

• 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

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Parent Contacts

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

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Health and Safety, Risk Assessments

• Volunteers need more advice from H.O.
• Details of insurance and accountability

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Some Outcomes

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

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The Future

• 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

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