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.

I know.

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?”

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.

Had I not listened to RTÉ One this morning, I would have missed a brilliant quote by one of Ireland’s most famous philosophers, Eamon Dunphy, who apparently once said that “football is played on grass, not on paper”.

Ok, Eamon is probably better known as a brilliant ex-soccer player and a very controversial commentator on soccer and all sorts of other things far less important. Whatever…  this quote is just brilliant in its simplicity.

Tonight, the German soccer team is in town preparing for tomorrow’s match against Ireland. On paper, the outcome is clear. But who knows what’ll happen on the pitch?

On paper, the outcome is clear for persons with severe and very severe acquired brain injury. But who knows what’ll happen to each one of them if they get the right level of care and therapy?

German Soccer team arriving at Dublin Airport on 23 November 1956 before their game against Ireland on the 25th. – No idea who won the match 59 years ago…

We went to Germany in November 2013 because there was a waiting list for Pádraig’s admission to the NRH of more than a year. And I could not accept this infuriating delay. Worse, I am learning now that in cases like Pádraig’s there is a view that patients should not be “treated”,  they should be “assessed” in a SMART bed following the Sensory Modality Assessment and Rehabilitation Technique, “to assess levels of awareness functional, sensory and communicative abilities of adults in vegetative (sic!) or minimally-conscious states”. It is “conducted over a three week period by an accredited assessor with subsequent treatment in the following eight weeks”.

Which gives us, roughly, the three months of stay in the NRH every person with a severe acquired brain injury gets in Ireland.

Every expert, in fact any person who had anything to do with a severe acquired brain injury knows that eight weeks of treatment are absolutely inadequate.

Yet this is what is being offered in Ireland.

And after that the nursing home for the majority of injured persons.

Who would ever give up like that on people who have terminal cancer? Who would ever give up like that on people who have a kidney condition that they will eventually die of?

Pádraig’s accident has radically changed his life, the lives of his family, and the lives of his friends. The impact of the truck on his head was devastating.

But there is much much more. What Pádraig has done over the past two years and, more, what he is about to do, Pádraig will change the way society and the system will look at and deal with severe brain injury.

The match will be decided on the grass, the pitch. Not on paper.

And the underdogs can win – despite…

It feels like going where nobody ever went before. Yet, it’s so close

Here we are. Home. But not home home yet.

Still wondering, though, what’ll happen next when.

It’ll all depend. On the assessments. On the view of the health authorities on a home care package that not many people have been looking for before. It’ll be decided on by people who haven’t taken decisions like this before.

So Pádraig is in the NRH primarily, not to be treated but to be assessed. There is, in fact, not so much happening apart from reports and applications being put together which will form the basis for the health authorities decision on the level of care and therapy he should be afforded when he’ll get home, home.

In all honesty. All that could be done in an hour.

In the meantime, I have loads of time listening to the radio on the way out to Dun Laoghaire every morning during rush hour traffic. The advert about the new high-tech emergency department that closes each night at 6pm and Sunday all day. Seems that private clinics don’t open out of hours. It almost beats the advert on the telly where a guy tells us that he loves ‘local’ everything which is why he buys in his local Lidl shop.

This is so bizarre and funny. You couldn’t invent anything like it.

Today I was told: this day next week building work will be finished. Which makes me think that if we managed to organise a bed, even an interim one, Pádraig could come home to check out his new rooms and maybe stay a night at home – for the first time in almost two and a half years.

That would be super cool …

When we moved into this house, we bought a table somewhere in a market in the liberties. It was out of the kitchen of a convent. Real wood. But painted. White.

I took it out into the garden and started to take off the paint. With a hot torch blower. With white spirit. With special paint remover. Nothing worked. It was painfully slow. Over many days. Just before I was going to give up I tried water and soap. And guess what. It worked. Where all the high-tech, dangerous, flammable, expensive attempts had failed. Soapy water did the trick.

Somehow this long forgotten tale came up today when driving back home from the NRH.

It shows that simple things work best at times. That you don’t need to spend tons of money to get the results you’re looking for. In fact, very often so much money is just wasted. For all sorts of reasons.

Like the the very high cost of a hospital bed when people could be at home, given the right support at a fraction of the price.

Today, Pádraig used for the first time an Erigo. This is a tilt table with a ‘walking action’, a kind of pre-Lokomat device for early neuro-rehabiliation. It was great to see Pádraig (almost) standing again. It’s so important for dozens of reasons for him to keep moving and get onto his feet again.

Also, for the very first time, Pádraig not solo lifted his left and then the right arm up when requested. He also, when asked, lifted one hand over and towards the other hand. He supported one hand with the other and held the two hands folded together over his chest. We knew that Pádraig can do this stuff. But it’s nice for the therapists here to actually see it! A simple exercise.

There ain’t much to smile about in Pádraig’s live.

But this past week was just brilliant.

First the big welcome in Rosslare, then the steady stream of visitors coming in to visit him, especially towards the second part of the week, He never stopped smiling when he was hearing the familiar voices of his friends.

Being in Dublin is really magic. There are a few hurdles to take yet, but I am sure it will all work out.

We pretty much know what Pádraig’s needs are. We have been living with him since January. Of course, all of that will need to be confirmed by the Irish specialists, but we intend to work very closely with them.

Tomorrow will be the beginning of another week. The first week Pádraig will spend entirely in Ireland.

The Dublin city marathon will be on in three weeks and today was my 32km run, the longest during the preparation.

This has been one of those weeks that morph into one big time warp. No days, no nights, no hours, no beginning, no end. When I had to look at the phone to remind me of the day it was. When I was so tired that I just couldn’t go on. When I was so excited that I just couldn’t sleep but had to listen to the ocean outside our window. When I got so upset that I really had to breathe in deep, and out, and in, and out, and then talk. When I was so happy to be home that nothing else could have been more important. When I was struck by the kindness of family, friends and complete strangers.

When I met, for the first time, in person, Marcus Mac Conghail, and he met Pádraig, for the first time, having written the most beautiful poem and song for him. A meeting, though short, I’ll never forget, and hope we’ll meet again.

We went out for a walk on Dun Laoghaire pier.

It was windy, a bit ‘fresh’, but so so so full of life. I know, I know, the pier doesn’t look exactly packed on the picture, but there anglers, kids, dogs, runners, walkers, young and old – where would you see that in a hospital, never mind a nursing home?

Where it’s routine to be confronted with talk about persons with potential and persons without potential. And resources being allocated to those with potential. When I know that we all have potential. When I know you support those who need support badly. I know it’s not meant in a bad way.

But it makes me furious. Because life is for all.

When we got back home this evening, the platform lift was installed, more lights added to the kitchen, the kitchen furniture almost ready, the floor in Pádraig’s new bedroom almost finished. Brilliant.

We’re getting there.

At home. At the hospital.

There are a lot of bits and pieces that will still need to be fixed at home. There are a few big things that still will need to be fixed. One of these big things was the stair lift from our kitchen up into the hall from where Pádraig will then have access to our living and dining rooms. They installer must have thought he was superman. Turned out he wasn’t. This was a job for four people. Wasn’t he lucky (and weren’t we) that there were a few other people working in the house. Although they had never planned to install a stairlift, they did.

Pádraig is back eating. Not quite yet the quantities and the consistency of the food he had previously, but he is eating fine. The x-ray they took yesterday to make sure his lungs were ok, also turned out to be fine. No aspirations. Not even the dreaded micro-type aspirations. Not really a surprise to us but a re-assurance for the speech therapist.

First conversations with the occupational therapist today. She’ll be assessing Pádraig to see what he’ll need in terms of equipment and physical surroundings at home. Again you wonder why not just copy the set we’ve been using for the past 10 months but it’s not as easy as this. I’m sure we’ll be getting there. I look at this from the positive side: we might find something that was overlooked previously.

We went for a walk around the building today and discovered a coffee shop, a restaurant for patients, and a restaurant for staff and visitors. And the toilets, of course. They are one size fits all kind of toilets which makes things so much less complicated. Pity that life is not like that. (And they left out at least one additional option.)

The NRH sign: one fits all?

Spot the one left out in the NRH sign

We’ve asked for permission to leave over the weekend, not home yet, but out for a walk in Dun Laoghaire, on the pier, if the weather allows. It’ll be great to see people, hear the waves, and feel the wind.

This is not what you think it is.

It’s not Spain or Barbados or Sicily.

It’s the garden of the NRH where Pádraig and I went for a walk today.

Things are becoming a bit more normal. It guess that by the weekend, it’ll all have settled down, we’ll all have got used to each other, and Pádraig will have adapted to his new temporary environment. And the environment to him.

We were asked would he want to go home for the weekend to get a break from the hospital which was a great offer. It won’t happen this weekend, not just because the house is still a bit of a building site, but also because it’s probably a good idea for him to stay in one place for a while and get used to that before starting to move again.

Once his room will be ready though, it’ll also be time for him to test it over a weekend and than move in.

Pádraig had a good physio assessment session today. I had a real good talk with the social worker. And I’m looking forward to meeting the OT tomorrow.

They will look into the possibility of different types of therapies (just to check them out), to check on the wheelchair and possible improvements for it, and to look into vision and hearing tests.

Contact with the HSE has been established and there are quite a few people getting ready to present Pádraig’s case to the organisation. Imagine if it all worked out just fine! If all the worries would just disappear. If all our prayers were answered. If we could start living life. With ups and downs. But without constant worries. Without the feeling that everything, everything requires such huge efforts and makes you stay awake at night.

We are very lucky to be here – although the idea of being, again, in a hospital has absolutely no appeal whatsoever. But staff here is not just very nice but also very professional, and there is no doubt that they have a huge understanding and interest in helping us to get the support needed from the HSE.

One thing that is clear and has become even more obvious over the past few days is that there is no place like Ireland with people who deeply care, with people who go out of their way, with people who give their time and more, when others need that help and support.

I’ve a feeling of settling down again. Home.

Today’s Paper.

I’m rewinding, trying to remember yesterday.

There was us leaving Rosslare, driving to Dublin, arriving in the NRH, attending a long meeting with the team that is going to look after Pádraig in the NRH, going home to a building site, falling asleep as I was trying to write yesterday’s blog.

I couldn’t believe the amount of sausages I ate yesterday morning myself. And the rashers. And the black and white pudding. – There’s me preparing for the marathon, I thought. Pádraig had a great breakfast too. Than we packed our bags and went to check out and pay.

Which is when we were met by another incredibly generous gesture: Laura, Bill Kelly’s daughter told us that Bill had looked after the bill. Would you believe it?

The drive up to Dublin was relaxing, we were trying to imagine how it would be in the NRH.

There was a lovely welcome and people were incredibly nice. One of the therapists turned out to be an ‘old’ pal of Pádraig’s from swimming. You should have seen the huge smile on his face when they met!

When Maria arrived, there was even more joy – he didn’t stop smiling, he was so happy to see her. Having been away for such a long time, meeting her just on visits, was hard. All that is going to be over now.

Hospi-tales continue.

This morning I rang the ward and the nurses told me that he had had some difficulties breathing. They also had not yet given him breakfast. But a nurse put the phone to his ear and I could talk to him briefly which was great. As soon as the meeting with the builders was over, I made my way to the NRH.

I arrived at around noon and it turned out to be a long day. Actually, I am still sitting here beside his bed. Pat arrived half an hour ago, after work and after talking to Cromac on Raidio na Gaeltachta. It took here ages to drive across the city together with thousands of commuters, all at the same, wrong time.

On his bedside, there was an oxygen mask connected. I did not ask whether they had used it. He was on an oximetre measuring his oxygen saturation and his heart beat. He apparently had a slight temperature. Nothing to worry about (yet) but to be watched. They were talking about doing another endoscopic swallowing test (FEES) of which he had three over several months, starting a year ago. Just to be on the safe side. Apparently, he did not swallow well enough. Was a bit chesty. I gave him a high calorie drink which went down very well. Another eating assessment was  made which did not work out well enough to give him more food. I stopped the plan to give him peg food.

I’ll be here tomorrow morning at 8.30 to meet the therapist and give Pádraig the breakfast he has been eating for months.

Everybody here is really nice, caring and kind. Everybody has Pádraig’s best interest in their mind. But this is a hospital where there are procedures, ways of doing things, ways to assess things, ways to avoid any risks. He is not quite ‘home’ yet. The hops-tales continue…

But, at home and in the NRH, letters for Pádraig are arriving, welcoming him in Ireland and even sending him the most German of sweets, from Ireland. – And yes, they taste the same here as they do on the ‘continent’:)

And then, also in the post, also today, the tickets arrived. Concert tickets. For Pádraig’s first concert in years. I wonder will Kodaline remember?

I felt every bump in the road.

But the car was empty.

Pádraig is, for the first time in eight months, not with us. Early this afternoon, he experienced another very warm welcome in the National Rehabilitation Hospital (NRH) where he will stay until the Irish Health Service Authority will have assessed him for a home care package.

Meeting the builders tomorrow morning – that is if I’ll wake up in the morning!

Soooo tired tonight. Can’t write anymore tonight.

PS: Pádraig’s return to Ireland was shared by 1,530 views of the blog and pictures!