Sue Berry - Cambridge Rare Disease Summit 2015
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The document outlines the wishes of a parent with a daughter who has Coffin-Sirus Syndrome. The parent's three wishes are: 1) for advances in research about the condition to help her daughter reach her potential in school through tools and education for teachers; 2) to understand the best ways to support her daughter through various services; and 3) for her daughter's developmental progress to be monitored in a way that allows professionals to better support her over time. The parent believes a comprehensive online child development timeline would help achieve these goals.
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Sue Berry - Cambridge Rare Disease Summit 2015
- 1. IF I WAS QUEEN FOR THE DAY… Sue Berry, Parent to a child with Coffin-Sirus Syndrome.
- 2. WISH 1 I wish the continual advances in knowledge about my daughter’s condition can help her reach her potential at school.
- 3. Development – from birth to adulthood.
- 4. Teacher Toolboxes (main stream schools) Autism Dyspraxia ADHD Downs Dyslexia
- 5. 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?”
- 6. WISH 2 I wish I knew the best path to follow to support my daughter.
- 7. How do I know what way to go..?
- 8. Who knows what? Child Clinicians Education research Social services Child Clinicians Education Research Social services
- 9. Falling between the cracks
- 10. WISH 3 I wish that my daughter’s developmental progress was monitored in such away that professionals can support her better.
- 11. 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
- 13. Why is there no annual audit of skills?
- 15. A site for every child To be used by clinicians, therapists, researchers, AND the family Family can record achievements, milestones and other skills.
- 16. 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!
- 17. IN SUMMARY
- 18. 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
- 19. If I was God for the day All children would have a blood test at birth and broken/missing genes would be fixed.
- 20. Finally I’d like to introduce my daughter. Her name is Charlotte Thank you
Editor's Notes
- I would like to make 3 wishes….
- 2nd Wish
- Like all of us my Daughter will spend at least 13 years of her young life at school. As we all know in the last 6 years there have been many curriculum changes and updates on how children & schools are monitored and measured. (the Gove effect!)
- Most main streams schools are aware of well known conditions and have strategies in place on how to help educate these children. With this new wave (CLICK) of conditions coming through it is harder for teachers to know how to help.
- For this wish I’m not sure of the answers, perhaps some method of linking new syndrome’s/conditions with different learning styles technical. My quote at the bottom of this slide is true, but when I’m not a educationalist or a clinician but I’m seen by teachers as an expert in my daughter. But all I know if the now and the history….
- There was no map given when my daughter was born to help me navigate my way through the world of special needs. They have been lots of helpful people long the way who have helped for a ‘mile or 2 and then we are on our own again. We are trying to keep on track but with no real idea of our final destination. I don’t know what I don’t know…!
- The same can be said for the services around my daughter. As mentioned while Education has been going through all their own changes, there are also being many cuts in support for social service. How can these 2 key areas who are there to support my child, keep up with all the amazing research and medical knowledge. How does all this learning come together for the good of my daughter? (click again) Joined up thinking.
- With so many aspects to keep on top off and think about . How can I Stop my daughter from falling through the cracks.. I want to future proof my child’s development….
- Here is my 3rd wish. @READ@ the next few slides will give you some back ground to why I want this wish and how I think it could be achieved.
- Ever since my daughter was born we have had our fair share of Specialists . In 10 years we have seen at least 13 different disciplines, for varying amount of times. As you can see as she has got ‘better’ or reached a level where budget constraints no longer keep her on any lists..
- A large number of these disciplines only treat their part of my daughter and rarely view her as a whole person. I would also frequently be asked the same set of questions, how’s she doing at school? What has changed since we last me etc etc.
- As you saw we have not seen many specialist in the last 2-3 years. There are regular stocktake or audit made on an annual or biennial basis to record and monitor my daughters development across all the disciplines. Not only would this be great to log her progress but would provide invaluable data for other clinician, researchers and parents for child with her condition.
- Also the final issue for me is that nearly every clinician/therapist we see have their own Charlotte file, paper . So her data is never collated in 1 space. So why in this age of facebook and fit bit can we not have an internet development log in per child.
- The account would be set up from birth and could replace the ‘red book’ that follows babies through their early years of development. Not only could all clinicians, therapists and health works add data to this. (ideally on line during an appointment) it should also have parental access. Such that parents can record key development stages, start crawling, walking, 1st word, cycling etc etc.
- I’ve listed some of the benefits why this would be so useful. The system could be set up with the ‘standard’ development stages for a child and as they are recorded by the parent the system would highlight if the was on track or not. 2. The parent feedback pages may need to have some guidance and character restriction or a novel per child would be captured. 3. If after a 2 minute scan of the child’s ‘dash board’ the clinician will have a better understand of the child and can concentrate on the next steps so more efficient use of an appointment. 4- the gold mine of data this would give research would be amazing….
- Before I finish I have 1 final wish….CLICK
- A Final wish… I love my daughter but her life would be a lot less challenging if she did not have any issues.