Ireland 1 : Germany 0
Eamon Dunphy (remember: he’s one of Ireland’s best known philosophers) said tonight on Irish TV that if you want to do something, if you really want to do something you have every chance to succeed. In life. In soccer.
Time is in short supply.
But please take a few minutes and read what follows. Let me know what you think. (Keep in mind that this is about policy and not individual people.)
I had bit of time this morning, waiting for the ceiling hoist man who was going to call in on his way to the Áras. So I did a bit more reading on SMART, the assessment tool developed by the Royal Hospital for Neuro-Disability in Putney (London, UK), following the comment by the father of another young Irish person with a severe ABI who was very clear in his mind about rehabilitation services in Ireland, “just” doing assessments but not getting involved in sustainable follow-up care and therapy.
Remember, the three beds, the only three beds, in the whole country, reserved for persons with severe acquired brain injuries, the beds Pádraig was put on a year-long waiting list for, was a SMART bed.
Here is Putney’s answer to the question “Why use SMART?”
Patients with Disorders of Consciousness are often difficult to diagnose. Unless provided with an up-to-date, comprehensive, structured and standardised assessment, potential consistent or meaningful responses may be missed or not fully explored. This, in turn, can lead to:
– Misdiagnosis and possibly withdrawal of nutrition and hydration
– Inaccurate allocation of resources for future patient management
Then there follows a bullet list of “potential reasons for insufficient assessment of this patient group”.
Then the article ends like this:
A Judge recently made a landmark ruling to ensure that SMART assessments are carried out in all future court cases in relation to determining patient awareness levels which could potentially lead to their nutrition and hydration being removed.
I found it hard to believe what I was reading. Was I over-reacting?
Combine this with the statements by health officials about their concern of resources being “wasted” on patients with severe ABI.
This is not SMART. This is upsetting and frightening.
Is it not in contradiction to the UN’s Convention on the Rights of Persons with Disabilities and, generally, against the human rights of persons with disabilities which are “are grounded in a human rights framework based on the United Nations Charter, the Universal Declaration of Human Rights, international covenants on human rights and related human rights instruments“? In essence, these instruments affirm the essentiality of “a universal respect for, and observance of, human rights and fundamental freedoms for all without distinction…”.
It is also in line with EU law, where “disability is a rights issue and not a matter of discretion. This approach is also at the core of the UN Convention on the Rights of People with Disabilities (UNCRPD), to which the EU is a signatory.” (Note: Ireland has not yet ratified this convention!) The European Commission’s European Disability Strategy 2010-2020, adopted in 2010, builds on the UNCRPD and takes into account the experience of the Disability Action Plan (2004-2010).
Luckily, the ceiling hoist man arrived, I got distracted, and started to get going. Another day. Another day closer to home home.
PS1: It would be difficult to find nicer people to look after Pádraig than the nurses in the NRH. Since Pádraig arrived there I have also seen therapists and doctors assessing Pádraig who are all very caring and professional, and who I very much respect and value. The above is in no way meant to be a criticism of them individually.