Pádraig did it before, but not at home: walking. It was only a few steps, ok, but so what? I was helping him to stand, his physio helped him to move his feet. Magic!
Pádraig had done this before too: spelling. Today, though, it didn’t work. He wanted to spell a word. We agreed on that. We used the Tobii to read him out the frequency alphabet. Apparently, the first letter of the word he wanted to spell was not on that list. I asked him, should I read out the list. He said yes. But apparently, I did not read out that letter he was looking for. When I asked him, should I read the list out like the ‘normal’ ABC alphabet, he said yes. Again, the letter was not there. I was running out of options.
Then I remembered how much Pádraig disliked, well ‘hated’, me speaking English. So I asked him should I say the alphabet in German. He said yes and Bingo – the first letter of the word he wanted to spell was “B”. I was thinking: how stupid and slow had I been not seeing the most obvious barrier for him to spell that word he wanted to spell! – Then the door bell rang, Pádraig’s programme moved on and I pleaded with Pádraig to remember his word until tomorrow… We’ll give it another go. Auf Deutsch:)
I very much respect the work of the Neurological Alliance Ireland (NAI). In fact, the An Saol Foundation is a member of the NAI. I also very much respect the work Dr Mark Delargy, Clinical Lead at Ireland’s one and only Rehabilitation Hospital has been doing over the past decades.
Today, the NAI posted a video in which Dr Delargy expresses his support for the NAI campaign: We need our heads examined. This is what the country’s leading rehab consultants need to do: publicly support campaigns like that of the NAI.
Dr Delargy says there is a ‘disconnect’ in the system; that patients in need of neuro rehab experience ‘severe and prolonged delays in achieving access to essential rehab services’. He also says that patients do not get access to the kind of therapy they really need, that even the NRH experiences ‘great difficulty providing the international level of intensity’ and ‘difficulty to provide it soon enough and for long enough’. He concludes that on this background he is happy to support the NAI’s campaign ‘trying to petition for improvements’.
I really respect Dr Delargy’s work and his decision to do this video, and sincerely applaud it.
But me being who I am, I do not understand how he can say what he is saying the way he is saying it. – You know what I mean. What he is saying about rehab services describes a national scandal! And the conclusion, in my mind, after decades of neglect, needs to be more than trying, to petition, for improvement.
There are also a few things the NRH itself could do immediately to improve this untenable neglect of those requiring rehab:
- The specialists in the NRH could state what the “international level of intensity” should be for rehab and what it is now – in the NRH and in the community (it’s very close to 0 in the community at the moment). That would provide significant support to those who are campaigning for more resources to be made available and for existing resources being used more wisely.
- The NRH also could, what am I saying: it really has to make available equipment, especially highly specialist equipment, that has been donated to them by generous fundraising, to those who need it – even if the NRH itself cannot offer treatment on this equipment, other nonprofits, like An Saol, could, out of hours, even on weekends.
The above are just two simple examples.
Above all, however, we need consultants to lead. Not to tell parents any money spent on physiotherapy for their sons and daughters is a waste. But to encourage and support them to do whatever it takes to provide a quality of life for those with sABI, something they have an absolute, fundamental, universal human right to enjoy.