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 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) Chair: Dr. (Mr.) A. Dickson (Manchester, UK) Co-Chair: Dr. M. Patricolo (Abu Dhabi, UAE) Co-Chair: Dr. M. Patricolo (Abu Dhabi, UAE) Remaining Structure: 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: New Member: Dr. Intan Sabrina Binti Mohammad Dr. Intan Sabrina Binti Mohammad WFNR member WFNR member Master in Rehabilitation Medicine (Malaysia) Master in Rehabilitation Medicine (Malaysia) Special Interest : Paediatric Rehabilitation Special Interest : Paediatric Rehabilitation Translated several documents in Malay for our SIG Translated several documents in Malay for our SIG

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

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

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

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

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

SIG ACTIVITIES AGREED ISTANBUL Proposal for WCNR 2016 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 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 Combined Meeting of SBH and Neurosurgery SIG’s – Neural Tube Defects and Comorbidities10 minutes – Management of Spina Bifida and Hydrocephalus30 minutes – Management of Neuropathic Bladder and Bowel30 minutes – Challenges of Developing Countries and Rural Areas15 minutes – Transition Care for Neural Tube Defect patients15 minutes – Example Case Reports25 minutes – Q&A’s15 minutes

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