It’s almost two o’clock in the morning. And I’m not even having a good time, as one should if you stay up that late. It’s almost one o’clock back home in Dublin. – I’ll have to fake the time of this blog so that it looks like as if it had been written on 18 March, just before midnight. You will forgive me, I am sure.

Tonight, the “Late Debate” on RTÉ Radio 1, the first radio channel of Ireland’s national broadcaster, dedicated a full hour to Pádraig’s case. To “this broken health system” and to an insurance “system” that promises a 6.5 million cover, but then doesn’t pay the bills.

We spent a lot of time preparing for this hour and then did not manage to get half of the points in. The lesson I learned: right at the beginning, no matter what the first question is, you just ignore it and state your most important point.

“It is said that a society can be judged by how it treats its most vulnerable members. The Medical Independent reports that when it comes to providing appropriate rehabilitation services, Ireland is neglecting its duty of care.” (June Shannon, 14 July 2011)

1. The National Rehabilitation Hospital’s consultant in charge of Acquired Brain Injury co-authored a report which clearly states that “Access to rehabilitation is a basic human right. European legislation makes it clear that people with disabilities should have access to appropriate rehabilitation” and “All those needing rehabilitation should have access to it. This holds also for those with extensive or multiple disabilities.”

2. Neurorehabilitation services in Ireland are recognized to be the worst in Europe. And even if the improvements being sought were implemented, they would still be worse than those in any other European country with the exception of the UK. For example “we currently have 7 consultants to serve specialist neurorehabilitation needs across the whole country. But even if we had 50 we would still have the lowest number per capita in Europe with the exception of the UK. And if it increased to 150, we would still be behind countries like Estonia, Latvia, Czech Republic, Croatia and Serbia. In other words, what we are really aspiring to is not to have services that any country could be proud of, or even services that are mediocre – but to be the second worst country in Europe for neurorehabilitation.” (Chris Macey, Chairperson NAI)

3. There are just three beds allocated to the disorder of consciousness programme in the country’s only rehabilitation hospital. Aoine Carroll, National Clinical Lead for the HSE’s rehabilitation medicine programme: “It is very labour intensive because we have such a shortage of beds. We can’t justify any more 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 that service to three.” – Dr Carroll seems to see patients as an investment: if you don’t provide a return, we’ll ditch you. Dr Carroll, neurorehabilitation “even” for severe cases, is not primarily a question of investment, but a question of ethical and legal obligations. ETHICAL AND LEGAL OBLIGATIONS!

4. A highly prestigious scientific publication, the Cochraine review, published a report on “Multi-disciplinary rehabilitation for acquired brain injury in adults of working age (review)” in which the authors stated:
“For moderate to severe injury, there is ‘strong evidence’ of benefit from formal intervention. For patients with moderate to severe ABI already in rehabilitation, there is strong evidence that more intensive programs are associated with earlier functional gains.” Meaning that there is widespread scientific agreement of the question of rehabilitation, of formal intervention.

Consider this:

• We wrote a letter of complaint to the Patient Representative in Beaumont Hospital and never received a reply.
• We wrote a letter to the Taoiseach who in turn asked the Department of Health to get in contact with us “without delay” – over a week ago. We have not heard from them yet.
• We are raising what has been known for a long time, what is blatantly obvious, and what nobody cares about: the dignity and the human rights of the most vulnerable members of our society. Ireland is neglecting its duty of care.

The answer: white papers, strategy papers and implementation papers. Stuff, civil servants like.

But lets make it concrete, graphical: what about the lack of funding to buy a headrest for a wheel chair; to buy cotton buds to conduct proper oral hygiene; to buy equipment for each patient so that it doesn’t have to be shared, so that it doesn’t spread multi-resistant bacteria? What about dislocated shoulders, bed sores, and dropped feet? What about the lack of personal hygiene, not getting your hair washed for months, being put under severe risk by doctors not washing their hands before and after they examine you? What about being cared for in an acute hospital environment when it is clear, that, without the shadow of a doubt, you should receive early neuro rehabilitation?

“We are all to blame”, said a prominent participant on tonight’s show – to which I would have replied, had I had the opportunity: “No, we are not.” But where have the specialists been, the consultants and doctors who are supposed to stand up for their patients’ rights and dignity?

And now: the best for last. In preparation for tonight’s interview, I checked out Pádraig’s Glasgow Coma Scale (GCS). The GCS measures Eye Opening, Verbal Response, and Motor Response, and is a reliable and objective way of recording the initial and subsequent level of consciousness in a person after a brain injury. The GCS is scored between 3 and 15, 3 being the worst, and 15 the best. While every brain injury is different, generally brain injury is classified as:

• Severe: GCS 3-8 (You cannot score lower than a 3.)
• Moderate: GCS 9-12
• Mild: GCS 13-15

In Beaumont, it was between 3 and 4 (3 being the lowest possible value). Having checked with his doctor this morning, this value has gone up to 10-11. Pádraig is out of the state when he could not communicate and react, and not in a deep coma anymore.

Take note: even “individuals who will never get to that point, so we have to limit the number of beds that service to three” can make progress – if you leave them with their fundamental human rights, if you treat them with respect, and if you don’t ditch them (because you care)!

Tonight I know two things: (1) Pádraig will most definitely get better, much better; and (2) I will not let the ‘system’ get away with it. This is not about papers, this is about Pádraig’s health, dignity, and human rights – as well as that of many, many others in his position. And the Taoiseach, the Minister of Health, the NRH consultants better take note.

And what the insurance is concerned – who would ever in their right mind buy an insurance policy that promises millions of euro and then pulls out the small print when you need their help? Who would ever in their right mind buy an insurance policy that is obviously not fit for purpose?

It’s three o’clock now. Good night Ireland!