Here we are, trying to set up a service for persons with a severe acquired brain injury and we have to work our backs off to be even heard by the health service. They agree that this service doesn’t exist. They agree this service is badly needed. And instead of helping us to set it up, it’s almost impossible to be even heard. – Isn’t that mind-blowing?

We had ordered a bed and a mattress. Both custom-made. It took a few days to get the mattress. Today, the bed arrived. Turned out they got the measurements wrong.


A phone call by the carpenter who was setting it up. A big apology. And a delivery date of next Wednesday. That easy.

The bed is for us when we stay with Pádraig during the night.

In contrast to this custom-made bed which took about 3 weeks to get, Pádraig’s (in)famous standing bed has not even been ordered, as far as I know.

You wonder who is responsible for these incredible delays that don’t cause a mere inconvenience – as in the case of our fancy new walked – but serious health problems for Pádraig, as evidenced by the community therapists who got so worried about Pádraig’s oxygen levels they rang Pádraig’s GP a week ago.

I know life isn’t perfect. And people aren’t perfect. But there must be a way to do better than this. Because ‘this’ is not only unacceptable, it is not only contrary to the UN Convention of the Rights of People with Disabilities, it is dangerous for our family members’ health. And I mean: really dangerous.