For some reason, I’ve been talking recently to people about what we heard from health officials and senior medics over the past years in relation to the treatment of persons with severe acquired brain injuries, in the USA, Ireland, and Germany. And I think it’s worth looking at them again. Because now, we know much more. We know how Pádraig is doing after two years of good care and therapy.
What we heard and read includes published remarks by the National Clinical Lead for the HSE’s rehabilitation medicine programme in Ireland and former Chair of the Medical Board at the NRH in Dun Laoghaire, in relation to the treatment of patients with a disorder of consciousness, referring to the fact that there are only three beds for these patients in the whole country, leading to a waiting time of a year – when it is widely recognised that immediate intervention and early neuro rehab is necessary:
“It is very labour intensive because we have such a shortage of beds. We can’t justify anymore beds because you can make the argument that it is a much better investment of resources to invest that time and effort into individuals who are going to increase their functionality, reduce care costs, hopefully get them home, get them back to work. These are individuals who will never get to that point, so we have to limit the number of beds for that service to three.”
Note: Just read the above again. Slowly.
It includes remarks by another senior health official who said the following on Irish National Radio, following a prompt from myself (The Late Debate, starting at around 34:30, the health official’s remarks start at 37:00):
“This is about how we use our resources and are we using our resources in the best possible way. Our resources are limited. We are a small country. There are things we’ll never be able to do well. And at what level will we set the point that we say…”
There are two really remarkable points about the above.
(1) Even people in the Irish health sector working with persons with disorder of consciousness do not believe me when I tell them that this is the view of some leading consultants and health officials in the country.
(2) Although Pádraig *is* one of the people who, according to this view, does *not* offer a good return of investment because he is one of “These are individuals who will never get to that point” of increasing their functionality or going home or have their care costs reduced — he *has* increased his functionality (e.g. only eating orally), he *has* gone home, and he *has* decreased care costs by at least 18,000 euro a month (“just” by the removal of his tracheostomy because of our ongoing insistence and care; and there is more). He has done all this because he had huge support and got good care: he is not on any medication, does not have dropped feet, takes food only orally, has no catheter (and no urinary infections), has great skin and no bed sores (apart from those he got in Beaumont), and he has no other injuries or bugs. It looks like he defied all medical knowledge, judgement and expertise.
And to me, it looks like as if Pádraig’s live will fundamentally change the way the experts think about persons with severe acquired brain injury. It will fundamentally change the way they think, they talk, and they treat persons with severe ABI.
Back in Germany and at REHACare for a few days.
People in wheelchairs pulling themselves and their wheelchair up to the top of the exhibition hall. Lifts lifting people up to any height desired. Thousands of people talking and living integration. Every imaginable help and support for any imaginable need.
And another fresh look at the German media, reporting on hundreds and thousands of refugees moving across the Austrian border into Germany via a small country road and Mr Putin literally going on the attack.
I met our friends from Pforzheim who introduced me to some of their contacts running different kind of care houses for persons with severe acquired brain injuries, leading to extremely interesting conversations and allowing me to continue my amazing learning experience about all the things that are possible!
One of the people I talked to said: “The question of whether to provide adequate support to persons with a severe acquired brain injury or not does not arise. They are alive because they decided to live. Had they not decided to live, they would have died, probably a few times, along the way. And because they have decided to live, they have a right to receive, and we have an obligation to provide any possible support we can that will enable them to live their life to the fullest extend possible.”
And that’s the way it is. Amen.