Taking part

Do you want to talk about your experience of A&E?

Maybe take part in Disability Pride on 20th Sept?

What about influencing the NI Implementation Plan for rare disease?

We can do all of them.

Northern Ireland Human Rights Commission are looking at people’s experience of A &E. How was dignity preserved? Was there appropriate information? Were you able to participate in  decisions made about your care?

NIHRC

NIHRC want to hear from patients, family members, carers and staff, and will accept anonymous submissions. It’s not about individual cases, or identifying staff- the purpose is to analyse how the NI Executive is meeting international human rights standards, in particular the right to health.

Submissions will be accepted via Freephone 0800 028 6066, on-line, or at a series of public meetings across NI (Belfast, Bangor, Downpatrick, Newry, Armagh, Ballymena, Coleraine, Derry~L’Derry, Omagh & Enniskillen) in September and October.

DisabilityPride

DisabiltyPride will be a major celebration of diversity taking place in Belfast on 20 September 2014. There’ll be a parade for walking/ rolling/ pushing/ travelling by float (floating?), a concert with music and comedy, food and retail tents and charity tents for activities, information & fundraising. NIRDP have booked 2 tents for use by the partnership – space for banners, teddy bears, leaflets etc. Contact info@nirdp.org.uk if you want to share the space, at no cost.

‘Disability Pride represents a rejection of the notion that our physical, sensory, mental, and cognitive differences from the non-disabled standard are wrong or bad in any way, and is a statement of our self-acceptance, dignity and pride. It is a public expression of our belief that our disabilities are a natural part of human diversity, a celebration of our heritage and culture, and a validation of our experience. Disability Pride is an integral part of movement building, and a direct challenge to systemic ableism and stigmatizing definitions of disability. It is a militant act of self-definition, a purposive valuing of that which is socially devalued, and an attempt to untangle ourselves from the complex matrix of negative beliefs, attitudes, and feelings that grow from the dominant group’s assumption that there is something inherently wrong with our disabilities and identity.’ Sarah Triano.

During the summer, DHSSPS will publish the  NI implementation plan (of the UK rare disease strategy) for  consultation. We’ll have 12 weeks to make copious comments (thanks to Janet B for that one!) emphasising all the things we think are important- access to medication, appropriate referral to specialists, centres of excellence, the importance of translational research, a clinical trials website… and many more! We’ll share the plan here when it’s available, or it will be on the DHSSPS site.

What would you like to do?

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