Sue Berry - Cambridge Rare Disease Summit 2015
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Transcript of Sue Berry - Cambridge Rare Disease Summit 2015
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IF I WAS QUEEN FOR THE DAY…Sue Berry, Parent to a child with Coffin-Sirus Syndrome.
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WISH 1
I wish the continual advances in knowledge about my daughter’s condition can help her reach her potential at school.
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Development – from birth to adulthood.
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Teacher Toolboxes(main stream schools)
Autism Dyspraxia ADHDDowns Dyslexia
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How can research help?• To enable the educationalist to help my daughter to learn.
• To provide technology that can be use to instil and re-enforce this learning with my daughter.
• To provide a pipeline for the education team to keep up with all the new research.
• “What do I say to a teacher who wants to know more about my daughter’s condition so that they can help her to learn and reach her potential?”
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WISH 2
I wish I knew the best path to follow to support my daughter.
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How do I know what way to go..?
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Who knows what?
Child
Clinicians
Education
research
Social services Child
Clinicians
Education
Research
Social services
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Falling between the cracks
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WISH 3
I wish that my daughter’s developmental progress was monitored in such away that professionals can support her better.
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Medical services / clinicians involved in the first 10 years of my daughter’s life:Age /Service
0 1 2 3 4 5 6 7 8 9 10
Neurology
Portage
Specialist nurses
Dietician
S<
Physio
OT
Eyes
ENT
Psychologist
Orthotics
Paediatrician
Genetics
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The holistic child
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Why is there no annual audit of skills?
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Child development timeline
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A site for every childTo be used by
clinicians, therapists, researchers,
AND the family
Family can record achievements,
milestones and other skills.
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Key benefits of a Child Development Timeline (CDT)
• A summary ‘dashboard’. • Regular parental input from any device.• Core information in standard format.• “Single source of the truth.” • Easy dissemination of new discoveries.• A rich resource for research.
And all this technology is here now!
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IN SUMMARY
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My 3 wishes are..
1. EDUCATIONAL: I wish the continual advances in knowledge about my daughter’s condition can help her reach her potential at school.
2. SOCIAL: I wish I knew the best path to follow to support my daughter.
3. MEDICAL: I wish that my child’s developmental progress was recorded in a way that helped new professionals support her better.
Joined up thinking
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If I was God for the day
All children would have a blood test at
birth and broken/missing genes
would be fixed.
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Finally I’d like to introduce my daughter.Her name is Charlotte
Thank you