CLAPA Conference 2015 Videos

January 11, 2016

Videos from our CLAPA Conference held in November 2015 in London are now available to watch via CLAPA’s Vimeo profile.

Many thanks to Atmospheres for handling the filming and production of these videos.

 

Conference 2015 – 01 – What do we mean by ‘Taking Control’? – Mark Russell from CLAPA Video on Vimeo.

What do we mean by ‘Taking Control’?

Mark Russell, Chair of CLAPA Trustees

In this introduction to the 2015 CLAPA Conference, CLAPA’s Chair of Trustees, Mark Russell, explains how he got involved with CLAPA, and sets the tone for a day centered around the experiences of patients and parents.

Conference 2015 – 02 – “Nothing About Me Without Me” – Amanda Bates from CLAPA Video on Vimeo.

“Nothing about me without me”

Amanda Bates, CLAPA Volunteer

Born with a cleft in the 70s, in this talk Amanda shares her wide range of experiences growing up with a visible difference, and how becoming an adult in the service gave her a new perspective on her own care.

 

Conference 2015 – 03 – Returning to Treatment as an Adult – Danielle Keohane from CLAPA Video on Vimeo.

Returning to treatment as an adult

Danielle Keohane, CLAPA Volunteer

Danielle was born with a cleft lip and palate. She spent nearly 7 years as part of CLAPA’s Children and Young People’s Council, and has since moved on to CLAPA’s Adult Voices Council. As part of this year’s theme of ‘taking control’, Danielle shared with us her experiences of transitioning into an adult patient.

Conference 2015 – 04 – Influencing the Direction of Research – Rachel McDermott from CLAPA Video on Vimeo.

Influencing the direction of research

Rachel McDermott, CLAPA Volunteer

Rachel’s 5-year-old daughter was born with a cleft lip and palate, and since then she has been active as a CLAPA volunteer as well as within the Healing Foundation’s Research Council which funds the Cleft Collective, the world’s largest cleft research programme

In this talk she explains what motivated her to get involved with research in the first place and what it has meant to her and her family.

 

Conference 2015 – 05 – Discussion Groups – When have you not felt in control? from CLAPA Video on Vimeo.

DISCUSSION GROUP: When have you not felt in control of your care?

Facilitated by CLAPA Staff and Trustees

In this session we have use the Moments of Truth during the treatment pathway and feedback from the CLAPA survey to highlight situations which can be particularly difficult for people affected by cleft.

In discussion groups, delegates talk about situations where they haven’t felt in control, such as diagnosis, the first time they met the full multidisciplinary Cleft Team, trying to make decisions about treatment, etc.

The group filmed was facilitated by Cassie Footman (Trustee) and Anna Martindale (Staff), and was largely around the experiences of adults with a cleft.

 

Conference 2015 – 06 – Speech & Language Therapy Workshop – Marie Pinkstone from CLAPA Video on Vimeo.

Speech and Language Therapy Workshop: Part One

Marie Pinkstone, Specialist Speech and Language Therapist, North Thames Cleft Service in Great Ormond Street Hospital

Part of an hour-long workshop on Speech and Language Therapy (SLT)

Marie Pinkstone talking about how SLT fits within the Cleft Teams and how the service is provided in the NHS. She also talks about legislation and how to use it to get what you need for your child.

 

Conference 2015 – 07 – Speech and Language Therapy at Home – Nicole Prendeville from CLAPA Video on Vimeo

Speech and Language Therapy Workshop: Part Two

Nicole Prendeville, Specialist Speech and Language Therapist, North Thames Cleft Service in Great Ormond Street Hospital

Part of an hour-long workshop on Speech and Language Therapy (SLT)

In this talk, Nicole talks through a few different techniques you can use to support your child’s speech and language development at home.

 

Conference 2015 – 08 – Speech and Language Therapy Research – Debbie Sell from CLAPA Video on Vimeo.

Speech and Language Therapy Workshop: Part Three

Debbie Sell, Specialist Speech and Language Therapist, North Thames Cleft Service in Great Ormond Street Hospital

Part of an hour-long workshop on Speech and Language Therapy (SLT)

In this talk, Debbie talks about the PLAT project which trained parents to deliver SLT themselves supported remotely by SLT specialists. Later in the day, Debbie shared a video about the PLAT project which you can watch below.

 

Conference 2015 – 12 – A Parents Perspective from CLAPA Video on Vimeo.

The PLAT Project – A Parents’ Perspective

Debbie Sell, Specialist Speech and Language Therapist, North Thames Cleft Service

Debbie Sell presents a video interview about the PLAT Project which taught parents to deliver Speech and Language Therapy themselves supported remotely by SLT specialists. Learn more about the PLAT project in a short talk from Debbie above (see ‘Speech and Language Therapy Workshop: Part Three)

 

Conference 2015 – 09 – Launch of CLAPA’s New Website from CLAPA Video on Vimeo.

Launch of CLAPA’s New Website

Nick Astor, CLAPA Trustee

CLAPA Trustee Nick Astor gave the audience a sneak preview of CLAPA’s new website which launched on 15th December 2015. He explains how it was developed, what the priorities were, and what new features we have introduced.

Conference 2015 – 10 – Update on CLAPA’s Patient Voices Project – Gillian McCarthy from CLAPA Video on Vimeo.

Update on CLAPA’s Patient Voices Project – Part One

Gillian McCarthy, CLAPA’s Senior Regional Coordinator for Scotland

CLAPA’s Senior Regional Coordinator for Scotland, Gillian McCarthy, talks about our Patient Voices project which brings together different people with experiences of cleft services to represent the views of the cleft community in the area. A number of these groups exist already around the UK, and CLAPA would love there to be more.

 

Conference 2015 – 10 – Update on CLAPA’s Patient Voices Project – Mandy Temple from CLAPA Video on Vimeo.

Update on CLAPA’s Regional Coordinator Project – Part Two

Mandy Temple, CLAPA Volunteer

Following on from the Patient Voices talk from Gillian McCarthy (see above), CLAPA Volunteer Mandy Temple talks about her experiences of getting involved in this way.

 

Conference 2015 – 10 – The NHS Youth Forum – Ben Dockrell from CLAPA Video on Vimeo.

“Why I Joined the NHS Youth Forum”

Ben Dockrell

18 year old Ben Dockrell was born with a cleft palate, and is passionate about representing young people in the NHS. In this engaging and inspiring talk, he explains what drove him to join the NHS Youth Forum and how his time with CLAPA’s Children and Young People’s Council gave him the skills he needed.

Conference 2015 – 11 – Talking to CLAPA – Cherry LeRoy from CLAPA Video on Vimeo.

Talking to CLAPA

Cherry LeRoy, Regional Coordinator for South East of England

In this session we will explain the different ways CLAPA is involved with the cleft community all across the UK and how our regional staff and consultation groups can help you get your voice heard, even on a national level.

 

Conference 2015 – 13 – Discussion Group – How can CLAPA help you take control? from CLAPA Video on Vimeo.

Discussion Group: What can CLAPA do to help you take control?

Facilitated by CLAPA Staff and Trustees

We’ve heard about what we do now and how well we do it. This is your chance to feedback to us – what else could CLAPA be doing to empower the cleft community? How else can we help you to take control?

The feedback we received from this section went straight to our Trustee Board Meeting in early December and will be a part of our plans for the next year.

If you have feedback about this conference, these videos, or any aspect of CLAPA’s work, we would love to hear from you! Please leave a comment on the relevant website page or get in touch with us directly at [email protected]