Our advocacy response to the vaccine priority list

Our advocacy response to the vaccine priority list

We are acutely aware of the considerable anxiety arising from both the delay and miscommunication surrounding the COVID-19 vaccine rollout. In recent weeks, we have received a large volume of messages querying our advocacy work on this issue.

We would like to inform you that we have been working hard on this issue in collaboration with other key stakeholders to ensure that the concerns of those living with spina bifida and/or hydrocephalus are considered.

The following is a summary of our actions to date:

  1. As part of our political briefings, we met with health party spokespersons and submitted the following parliamentary questions:

• To request that the Minister for Health consider including those living with spina bifida and/or hydrocephalus in Category 4 of the vaccine priority list as the conditions are associated with kidney disease, neurological complications, respiratory complications and obesity. Although these complications may not be considered high risk individually, they constitute a very high risk when combined to an individual infected by COVID-19.

• To ask the Minister for Health for clarity on who is responsible for determining eligibility for Category 4 of the Vaccine List as there is currently no clear database on obesity, respiratory complications, etc.

Parliamentary questions were submitted by Alan Kelly and we are currently waiting for formal responses. Mr Kelly highlighted that there are delays within the Department of Health due to increased demand from the pandemic. We have since received responses for some of the questions referred to the Department of Health, but nothing on our COVID-19 specific questions as of today.

  1. Spina Bifida Hydrocephalus Ireland is under the umbrella of a coalition of fifteen patient organisations (IPPOSI) who have written to the Taoiseach, Chair of the High-Level Task Force on Vaccination and Immunisation, Joint Committee on Disability Matters, and the Minister for Health to urge that people with chronic and/or rare diseases/conditions, of all ages, be treated as the highest priority in determining early vaccine recipients.

  2. The Disability Federation of Ireland (DFI), The Wheel, and the Neurological Alliance of Ireland (NAI) are also continuously engaging with all political stakeholders to ensure that all people with disabilities are prioritised.

  3. We attended a Government briefing on the COVID-19 vaccine rollout and drafted an email which was sent directly to the Minister for Health on 25/02/2021 at 12.39pm. This email highlighted the additional risks faced by individuals with spina bifida and/or hydrocephalus that could put them at higher risk from COVID-19.

  4. An email was sent to the umbrella groups by Tom Scott, SBHI CEO, on 12/4/2021 querying why those living with disabilities cannot be vaccinated prior to the revised age-focused rollout. This is to be forwarded on by the DFI to those making decisions around vaccine rollout.

  5. Under the approach taken by the Government to see those in day services vaccinated, SBHI day service users from the Open Opportunity Programme have been registered by Aisling Nic Eochaidh, Open Opportunity Manager, for vaccination. The aim is to have all day service users vaccinated by 17th April 2021.

Furthermore, we will continue to action the following:

  1. To continue updating our stakeholders with any changes or developments through our communications channels.

  2. To continue lobbying and advocating for vaccine prioritisation for our members.

  3. To ensure this issue is highlighted on the agenda of all internal Spina Bifida Hydrocephalus Ireland meetings.

  4. To progress our work with the SBHI Adult Advocacy Group to ensure that all adults living with the conditions are represented, and that their concerns are conveyed to key stakeholders in the Government.

We are here to support you

We would like to remind our community that we are always available to acknowledge and listen to your concerns, provide accurate and up-to-date information, and support you in any way you require. If you require any further support, please feel free to contact your Family Support Worker.

Thank you for your continued support.

Spina Bifida Hydrocephalus Ireland, 14/04/2021