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Advocacy initiatives from Spina Bifida Hydrocephalus Ireland

SBHI's newly appointed Advocacy and Campaigns Officer, Talent Nyamakope


Advocacy has long been a focus for Spina Bifida Hydrocephalus Ireland. Through our various service teams, and with our volunteers, we have sought to advocate with and for those affected by the issues arising from spina bifida and hydrocephalus.

In recent years the strategic aims of SBHI have become more targeted and it is via this process that the main areas requiring advocacy action have become clearer. In 2019, the leadership of SBHI took the decision to invest more heavily in this work with the introduction of a full-time Advocacy and Campaigns Officer to concentrate on the relevant projects.


The purpose of Equality Now! is to build a platform for advocacy work from SBHI which offers the following:

  • A clear plan regarding our approach to advocacy and campaigns

  • The necessary resources to enable defined targets to be realised

  • Projects which see all stakeholders consulted and clear aims agreed

  • Programmed accountability which ensures real-life change is experienced by advocates who live with SB/H

Key developments

  • Formation of Paediatric Advocacy Group – April 2017

  • Fight of Our Lives film and website – July 2018

  • Formation of Adults Advocacy Group – Summer 2019

  • Appointment of Advocacy and Campaigns Officer – October 2019


The initial set-up for the Equality Now! project has a two-year vision. The funding to be received from the Dublin Airport Authority (DAA) in February 2020 will be the main revenue source for this work.

However, the onus is on the team involved to source other project funding so that the initial DAA funding lasts beyond this two-year period.

The CEO, Education and Training Manager, and Advocacy and Campaigns Officer are already involved in a project application with Maynooth University and the Health Research Board (HRB). This project fulfils one of the key advocacy issues facing members and would offer valuable research data for all involved.

It is work like this which will serve two essential purposes – 1) Fund the work in the longer term and 2) achieve the targets of the Equality Now! project at SBHI.

Plans for the future

The Advocacy and Campaigns Officer will begin work in October 2019. This work will involve developing current advocacy projects, as well as seeking new opportunities which lead to a sustainable future for this work.

Issues already well known and requiring further consideration include:

  • Equity of services for children with SB/H in the health care system

  • Access to health care according to geographic location

  • Transitioning from child to adult services

  • Ageing with SB/H

  • Housing for those living with SB/H

  • Continence - Access to continence wear (via HSE) / Continence in schools

  • Employment for those living with SB/H and transitioning to Third Level education/ Options after second level education

  • Implications for carers of those living with SB/H

  • Folic Acid awareness

  • Implications of Sodium Valproate (with Epilepsy Ireland)

  • Medication VAT hike

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We are Spina Bifida Hydrocephalus Ireland (SBHI). We are the national organisation for everybody living with spina bifida and/or hydrocephalus across Ireland. The Equality Now website is the hub for our campaigning and advocacy activities. Thank you for visiting and please to get in touch if you need more assistance.


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