Today, Pádraig stood up – for his rights.
This is a slightly long story. About just one issue. But, I think, worthwhile telling. And thinking about. And wondering: how is this possible in a civilised society?
Last summer, and you’ll probably remember me writing about this, I sent all the details about Pádraig’s care at home in Hamburg to the relevant people in Dublin, so that they would know what would be required for Pádraig in Dublin.
Pádraig had been assessed by doctors. We had lived with him almost nine months. I forwarded the specs and the prices for his equipment. This was going to be easy.
Just over two weeks ago (i.e. 5 months after Pádraig’s arrival in Ireland), a rep with a therapist measured (again!) the height of Pádraig’s room to make sure the standing bed would fit in.
Last Wednesday, at a meeting, we heard that Pádraig’s standing bed could still not be ordered because the right mattress had not yet been sourced (the rep had suggested a 2.1m mattress for the 2.3m standing bed – remember, I had forwarded the spec. for the right mattress and the details of the company selling it last summer).
Here now starts an even more amazing part of the story.
Last Friday, a therapist (without clearly communicating this to us) called Pádraig’s GP practice because they had become worried about Pádraig’s oxygen levels after a visit to see him the previous afternoon. Yesterday, both Pat (at home) and I (in Berlin) were surprised to get phone calls from the practice and then a visit by doctors – out of the blue. But – as we all know, lack of oxygen can be very serious.
There was a problem with Pádraig’s oxygen levels, sadly but not so surprising — as it was almost going to be expected: anybody not standing and not being mobilised for months will develop these problems. First year medical student knowledge.
This is why we had taken the initiative about a week or two ago and ordered a tilt table ourselves – basically, a therapy table that can ‘stand up’. We were not prepared to put Pádraig’s health at serious risk any longer.
After a bit of research, we ordered it from Poland where it was tailor-made for Pádraig and shipped to our home for less than half the price and in a quarter of the time it would have taken had we ordered it from a supplier in Ireland. (I hear you all asking: what???)
When Padraig stood up this morning, for the first time in months, in his brand new table, his lungs cleared, his oxygen levels went back to normal.
Having stood up, finally, in the standing-table, having felt his body on his feet again, this afternoon, he achieved another few PBs when cycling the MOTOMed. He cycled 2.5km at 42rpm – on his own.
I am tempted, but won’t, list all the things that went wrong here and won’t point out where it all went wrong and who was involved. Even as a non-expert, you’ll see that by yourself.
Not standing up for such a prolonged period of time significantly increases the very serious risks for your well-being, if not your life. For anybody – and far more so for someone with such serious injuries as Pádraig’s.
In my opinion, denying him, for months, the possibility to stand up is a violation of a long list of Pádraig’s rights – patients’ rights and basic universal human rights.
Someone said to me recently: in years to come, there will be an enquiry into how persons with severe acquired brain injury were treated in Ireland. And there will be an outcry and people will ask: how could we have allowed this happen?
We have the opportunity now to stand up, with Pádraig and others, for their rights.
Collectively, we can stop this injustice, the ill-treatment of the most vulnerable.