Sep 8, 2026 · 24 min · 9 segments
In this week's episode we talk to Before We Die founder Tony Murray and members Sinead McGrath and Sarah Roarty in Studio 16, Sandycove. This is a national movement of parents, family and friends…
Tony MurrayGuest
Sarah RoartyGuest
Sinead McGrathGuestPrimary HostHostCo-HostHostHow did the Before We Die campaign come about?
And I think when I turned 70, I realised that I was older than my two grandfathers who died at 69 and realised, oh, my God, I'm old.
I'd had my head in the sand for such a long period, not thinking about the future, afraid to think about it because effectively there is no future.
The Irish Times published an article last June 12 months about the waste of money in the HSE and I was outraged by the 100 million just lost.
wrote a letter to the Irish Times and a friend of mine who had worked in RT called me and said, would you like to try and get on radio to make your point? I got on LiveLine and that gave me a licence to talk to people about what do you think is going to happen when you die? So we had our first meeting in October of last year through an arts club that Aoife is in and literally it's gone from a meeting of about 12 mothers to now we have over a thousand members, we've met the Taoiseach, so we've moved it on.
It came from the point of view that in the Irish state, we realise there's no planning, there's no accounting, and there's no delivery of service.
I think also through the campaign, what we've discovered is we were actually all in a state of blissful unawareness in that we genuinely, as parents, thought there was a pathway for our children.
And it's only the more we get into this and the more we uncover, whether it be to do with the Capacity Act, whether it be to do with emergency placements, that we're really discovering the situation is actually far worse than we originally anticipated.
But what we've uncovered is systemic problems with the system that isn't fit for purpose, a system that's chronically underfunded.
And the last people they actually think about is parents and the adults with ID.
How did the Before We Die campaign come about?
And I think when I turned 70, I realised that I was older than my two grandfathers who died at 69 and realised, oh, my God, I'm old.
I'd had my head in the sand for such a long period, not thinking about the future, afraid to think about it because effectively there is no future.
The Irish Times published an article last June 12 months about the waste of money in the HSE and I was outraged by the 100 million just lost.
wrote a letter to the Irish Times and a friend of mine who had worked in RT called me and said, would you like to try and get on radio to make your point? I got on LiveLine and that gave me a licence to talk to people about what do you think is going to happen when you die? So we had our first meeting in October of last year through an arts club that Aoife is in and literally it's gone from a meeting of about 12 mothers to now we have over a thousand members, we've met the Taoiseach, so we've moved it on.
It came from the point of view that in the Irish state, we realise there's no planning, there's no accounting, and there's no delivery of service.
I think also through the campaign, what we've discovered is we were actually all in a state of blissful unawareness in that we genuinely, as parents, thought there was a pathway for our children.
And it's only the more we get into this and the more we uncover, whether it be to do with the Capacity Act, whether it be to do with emergency placements, that we're really discovering the situation is actually far worse than we originally anticipated.
But what we've uncovered is systemic problems with the system that isn't fit for purpose, a system that's chronically underfunded.
And the last people they actually think about is parents and the adults with ID.
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