SPINA BIFIDA AND HYDROCEPHALUS SPECIAL INTEREST GROUP March

SPINA BIFIDA AND HYDROCEPHALUS SPECIAL INTEREST GROUP March 2015 Abu Dhabi - UAE

SIG–BH: AIMS • Improve quality of life of patients with neural tube defects • • Publication of recommendations, policies, and ICPs To initiate research Identification of resources and specialized centres Provision for training in developing countries

Committee • Chair: Dr. (Mr. ) A. Dickson (Manchester, UK) • Co-Chair: Dr. M. Patricolo (Abu Dhabi, UAE) • Remaining Structure: – – – Secretary: Prof. S. W. Wasti Consultants for Neurogenic Bladder: Dr. M. De Gennaro Consultant for Nursing: Mrs. J. Rogers MBE Consultant for Neurosurgery: Dr. Dominic Venne Global Region Representatives: Unchanged Honorary members: Unchanged (Prof. W. Jaouni; Prof. M. A. Al Gohary)

Membership • New Member: Dr. Intan Sabrina Binti Mohammad WFNR member • Master in Rehabilitation Medicine (Malaysia) • Special Interest : Paediatric Rehabilitation • Translated several documents in Malay for our SIG

ISTANBUL WCNR 2014 • Symposium: • Neuropathic Bladdder • Neuropathic Bowel • Transitional care for Spina Bifida patients

ACTIVITIES AFTER WCNR 2014 • Translations in Malay of Paediatric Booklets: – – Understanding Bladder and Bowel Comorbidities in Children Bowel Care Pathway Talk About Bladder Scanning Talk About CIC – PDF copies of the original booklets and of the translated documents will be forwarded to Tracey Mole for publication on our SIG page of WFNR Website – A plan has been agreed with the SIG Members to prepare translation in Arabic, Urdu and Italian for circulation, and to be presented in occasion of ECNR 2015, in Vienna.

ACTIVITIES AFTER WCNR 2014 • The Article: “Addressing Continence in Children with Disabilities” has been published in October 2014 • Magazine: Nursing Times • Authors: J. Rogers MBE (SIG- SBH Cons. Nursing), M. Patricolo (SIG-SBH Co-Chair and Founder) • Reference: – Nursing Times 22. 10. 14/ Vol. 110; No. 43/ www. nursingtimes. net – The link will be published shortly on the SIG-SBH page of WFNR website

SIG ACTIVITIES AGREED ISTANBUL • International Multicentre Study re Neuropathic Bladder • Aim: to assess quality of services to understand different national situations to make recommendations • • Patient care Clinical services Clinician awareness Clinician training

SIG ACTIVITIES AGREED ISTANBUL • Agreement to create 4 questionaires • Circulate to all WFNR Members – (Prepared by J. Rogers and Revised by A. Dickson and M. Patricolo) • 2 for Patients and Relatives – Adult Patients – Paediatric Patients • 2 for Professionals – Paediatric Neurorehabilitation Clinicians – Adult Neurorehabilitation Clinicians

SIG ACTIVITIES AGREED ISTANBUL • Proposal for WFNR/ICS neurogenic bladder/bowel course • To be discussed at Montreal ICS World Congress • Children/Young adults committee (2 SIG-SBH members)

SIG ACTIVITIES AGREED ISTANBUL • Proposal for WCNR 2016 • We wish to request help from the WFNR Presidium and Prof. Wilson for the opportunity of having a Pre-congress Workshop or similar Session of SIG-SBH • Combined Meeting of SBH and Neurosurgery SIG’s – – – – Neural Tube Defects and Comorbidities Management of Spina Bifida and Hydrocephalus Management of Neuropathic Bladder and Bowel Challenges of Developing Countries and Rural Areas Transition Care for Neural Tube Defect patients Example Case Reports Q&A’s 10 minutes 30 minutes 15 minutes 25 minutes 15 minutes

ACTIVITIES AFTER WCNR 2014 • FUTURE PLANS: • 1) Standardization: – ICP’s for Neurogenic Bladder Clinic – Transitional Neurogenic Bladder Clinic are in process. • 2) Gulf Area Section • Family Participation with WFNR • Awareness Campaign for Patients, Relatives and Home Care Professionals • 3) Conference workshops • Summer schools • Flying Faculty • 4) Increase membership of SIG