Time to say ‘thank you’. Because today’s meeting with the Minister of Health, Simon Harris, T.D., was the result of the hard work and dedication of hundreds of people who, in their own way, have contributed to making the hidden crisis of the abandonment of sABI survivors public. And by making it public, they have contributed to getting the attention of those who are in a position to help us to bring change. The people who have been supporting the idea of An Saol from the very beginning with their very generous donations, their time and their expertise, fabulous beautiful crazy fundraising ideas, their efforts to spread the word amongst their families and friends, to people with ideas and influence. People who are directly affected by sABI, some of whom very sadly lost their loved one and of whom we think tonight especially. Admirably, however, also people who feel so deeply, so strongly, with so much empathy, about the abandonment of the survivors that they make it their ‘case’ to bring about change – even though they are not directly affected. Thank you to all of you, Dreamboaters!


Simon Harris, today, pledged his support to the An Saol Project and to our efforts to advance it. He said that he felt very strongly about it. He commended An Saol for its solid and thorough work in the preparation of the proposal. He and his officials listened to the stories of four families, provided first hand by Catherine, Joe, Terence and myself. There was an immediate agreement that what is happening cannot be allowed to continue.

What will need to be addressed in relation to the An Saol proposal are operational issues which we will start working on, together with the HSE, next week. There will be another meeting with Minister Harris when he will be joined, hopefully, by Junior Minister McGrath in a few weeks time.

I’m back from Dublin, sitting on the train from Frankfurt to Pforzheim with an ETA of midnight. So relieved. Because I nearly missed the flight, then the train, and several connections. It all feels a bit like the Midnight Special.

There are millions of different versions of this song, and even the lyrics vary – with one of the very early versions going like this:

Get up in the mornin’ when ding dong rings,
Look at table — see the same damn thing

…very similar to the Luke Kelly’s ‘auld triangle‘ and the ‘hungry feelin’ (but missing the verse about the female prison:).

When we’ll wake up tomorrow morning, we won’t be seeing the ‘same damn thing’. We’ll be looking at the beginning of a new era, a new life for sABI survivors and their families, of the beginning of a process that will change the hearts and minds of people, including professionals, about sABI.

What we have been told about our loved ones by professionals, how our loved ones and we have been treated at times, seen as wasters of precious and scarce resources in the health sector (because there was no ‘return on investment’), the ‘feed, medicate, hydrate’ maintenance approach – all that will one day soon be a thing of the past.

On that day, we will look back and wonder how on earth the inhumane and degrading treatment of people with sABI and their families was allowed to continue for so long. Why didn’t we shout ‘STOP’ earlier? That day, we will remember today’s meeting, when the Minister of Health heard the story of a 30 year young man ending up in a nursing home. And when he said, softly, ‘he’s my age’.

We’re not there yet, but we can certainly see the sun raising beyond the horizon, at the end of the line for the Midnight Special. We’ll get out of the darkness. Soon. And I’ll be in Pforzheim by midnight:) Hopefully.