The call came in today: the promoters (MCD) and the band will make sure that Pádraig will have the time of his life at the Kodaline concert on Saturday. Wow! How cool is that? Sound check! Concert! An evening of first class music! Brilliant!

Another first today. I received an email from an occasional reader who felt that I had misunderstood and subsequently misrepresented the situation about Pádraig’s home care package and asked me to correct this.

I had said that the application had not even been submitted to the corresponding HSE office – referring to the office that would take the final decision. While this is true, what I had not mentioned was the enormous and tireless effort by dozens of people who put an enormous amount of work and time into all the supporting paperwork for this application, the dozens of people who met us over the past 10+ weeks assessing Pádraig and preparing the paperwork. I also did not mention that, of course, most details of the application have been agreed by the NRH and our local HSE Home Care Manager.

So, it’s far more involved and complicated then I had described it: a home care package application has indeed been made to the Home Care Manager of our local HSE Area (this is not the person who will take the final decision). After this manager has approved it all, it will then be advanced to the Intensive Homecare Package Office for final approval by them. This is a lengthy process and involves a lot of checking on prices etc.

So, in case I made it sound as if no one had bothered to make the right application at all – that was never my intention. The process is well in hand, and we’re kept well informed of where it is at any given time.

It was a bit as if Santa had arrived early – or Nikolaus late: Pádraig got a brand new food mixer (haven’t unpacked and checked this yet for suitability) and a great invention called WendyLett. They are like satin-type bed covers and sheets that will allow us to position Pádraig in bed with much more ease. It’s also made of a material that looks great and protects the skin from sores much more effectively than ordinary sheets.

Pádraig also found a great new use for the buttons: I never knew when Pádraig was ready for the next spoon during eating time. Now, we are practising to push the button when he is ready. Not perfect yet, but it kinda works.

This morning, I looked up Tom Clonan and his campaign to get better services for home care. Tom is a well-know security analyst, journalist and campaigner in Ireland. He had been on the radio recently and left a really good impression. Then I thought: what if Tom was to be interested in getting involved in an An Saol meeting… So I emailed him. Then I thought about possible topics for this event, and here is what I could come up with, not necessarily in this order and not exclusively these:

• Treatment abroad: the practicalities of the EU’s Cross Border Directive
• Question the professionals: recurring topics in the acute hospital and in rehab
• Take charge: Legal issues around severe head injury
• Best Practice: Facilitating recovery long-term
• Reality Bites: The politics and practice of long-term care in Ireland
• Round table: The Family Perspective – followed by open mic

We would need a good venue and a really good MC, at least for the round table and open discussion.

What do you think?

I had heard that word before, resilience, but when I heard it mentioned today again I looked it up. It’s a great word to describe what defines a Dreamboater: you believe in yourself and your resources, you never give up, you’ll never allow anybody to drag you down, you take charge and show the way – even after a catastrophic accident.

Imagine.

Pat and I were in Salamanca in 1980, getting to know each other (at least that’s what I thought:), when we heard that John Lennon had been shot. None of us could believe it. I thought: if this peace-loving man managed to annoy someone so badly that he decided to shoot him, my chances of a long life weren’t great. What I didn’t understand then was that nobody would really care enough about what I’d be doing to ever bother killing me.

There are times when I wonder how I could change that (=making people really care).

Today, Pádraig is 10 weeks in the NRH for assessment that was required by the HSE to approve a care package.

As a German, I’m really concerned that the application for Pádraig’s home care package, including the care proposed and his equipment, has still not even been submitted to the corresponding HSE office – never mind been approved.

As an Irish person, I’m really delighted that his “PAs”, his  “personal assistants” (not: “carers”!) will be trained in the NRH next Monday and Tuesday – meaning that everybody feels really confident that the pieces of the puzzle will fall into place very soon.

I can’t but hope that it’ll be the Irish way that’ll work here.

Today is also the Day of the Immaculate Conception and the day that the people from the country, ‘culchies’, are coming to town to do their Christmas shopping. Christmas is near…

Imagine. A new year. An Saol. With a focus on what is possible. For support. Dignity. Autonomy.

Part two of EAT, electronic assistive technology, this time not in the EAT clinic but in a combined therapy session.

Here is the setup.

The switch (a different one) under Pádraig’s foot, with a wire coming out of it which is connected to a box that is connected to a wall plug and to a radio. When Pádraig presses the switch, the radio turns on; he presses it again, the radio turns off.

This is different from answering yes/no questions, or pressing the switch when he hears a certain letter he’s been given earlier, because this is initiating the action himself. He presses the switch when he wants to listen, and he presses it again when he had enough.

Back on the ward, we put the switch into his hand (the cables didn’t reach to his foot). And guess what? Right! Not a prob.

To finish off on another note: watch the videos, it’s important to watch them in sequence. And in case you haven’t been in Ireland, the wind and rain here, especially in the West, has been the worst ever.

Click here to watch the first video.

And then click here to watch the ‘pimped up’ version of it. No surprise, really, that this got almost 400,000 views in just two days.

Someone said, they could use this for the next sequel of Jurassic Parc.

Just realised that this is my second ‘Nikolaus’ post. But it’s the first from Dublin. On the way back to the NRH tonight, we took the scenic route through O’Connell Street and around Trinity College, passing Grafton Street to show Pádraig the Christmas Lights.

There were no lights in the trees anymore as there had been before we left – actually, I remember them never have been taken out during the year, and just not being switched on during the summer…

We had our Sunday routine today. Irish mass at 10 in Church Street with a priest on two crutches who could hardly make it around the altar – but with beautiful Irish, it sounded really nice and fluid, just causing myself some problems as I was trying to pick up some words from the missalette – a nearly impossible task.

I’ll have to check that out tomorrow again – but it seems like the brilliant Neurological Alliance and with it the hundreds and thousands of people that are served by them was cheated out of theirs moneys – by a minister that was just looking after his own interests – playing ‘Nikolaus’ for his constituents.

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Really important in Germany.

No-one knows about it in Ireland.

And if they do, it doesn’t matter to them (to say it politely). Except you’re called Patrick or Pádraig or Páraic or Patricia or something like that.

So tonight I’m quietly celebrating my saint’s day while the world around me couldn’t care less. So what!

Pádraig is good, happy to be home.

Quietly, to be honest, I’m reaching the threshold of what I’m able to take.

Quietly, I think I’ll need to raise €2m and build an alternative to this mess. Working with the good people (they are the majority), leaving the others where they are (that’s where they want to be). – The alternative would be to pack it all in to an RV and drive. Haven’t discarded that not yet altogether either:)

Today, I went to my first professional one-day conference, organised by Headway, entitled “Current Best Practice And Future Directions In Neuro-Rehabilitation After Acquired Brain Injury”. Fair play to Headway!

At the end of the event I had decided I would not become a professional.

There were lawyers, doctors, therapists, researchers, and myself. When the CEO of Headway opened the event in the morning, I even got a special mention.

In my mind, the best talk of the day described rehabilitation as working for a meaningful and satisfactory life – not a series of ‘score taking’. It was a very comprehensive presentation of a very complex topic covering statistics, HSE initiatives, and expressed the hope that change could be on the way. However, it also described the practice that the injured are being sent back to acute hospitals after rehab as ‘beyond belief’. It highlighted that the 1999 recommendations by the Royal College of Surgeons of England (which also covered Ireland) for post-neurosurgery had still not been implemented. It described the resources available in Ireland as insufficient and as “shame on our service” – and compared this to the 200 rehab consultants working in Slovenia (in case you didn’t know, Slovenia has half the population of Ireland). It described a pathway to rehabilitation with two important elements, i.e. specialist in-patient rehab and specialist community-based rehab, as – “to put it politely” – “not consistently available”. It remarked that the State was failing the need of patients with brain injuries. It asked for support for the public outrage at the lack of services. It posited that in order to bring change (more quickly) family members needed to agitate because politicians listen to the public more than to the professionals. In order to bring change we need catastrophes. – What a speech!

It was a very powerful speech given with conviction. Somehow, however, I don’t think some of the listeners felt or even understood the magnitude of what was said. There was no outrage there. There was no agitation. Because, well, there were no injured and none of their family members. These were professionals.

I don’t want to be unfair to professionals though. Some of them haven’t lost their heart and their convictions (the speaker I mentioned earlier is one of those).

A few things happened today in the NRH, including a text Pat received from another kind of professional. The lady we bought curtains (well, not really curtains but ‘stores’) from Hickey’s last Sunday. Her colleague had called in during the week to put up the rails. She said that the curtains were ready, that she had pressed them, and would bring them down to the house this evening. She arrived this evening, hung them, re-measured the new windows and explained to us what we needed to buy instead of custom-made curtains (costing a fortune). She said ‘hello’ to Pádraig and wished him and us well when she left. On her way back home she texted again, she’ll be working in Sunday and will look after us, making sure we’ll get the over-curtains before Christmas. A true professional.

Today was EAT-day.

No food. But great technology.

Well, we started with some good, basic, hands-on engineering.

There is a clinic for ‘electronic assistive technology’ (EAT) in the NRH for which Pádraig had an appointment today. The idea was that the specialists would explore in which way technology could help Pádraig communicate better and take more control over his environment.

Basically, if you can press a switch to answer yes/no questions, to indicate that you recognise and understand words, or to spell – then you can ‘tell’ the radio that you want to listen to Raidió na Gaeltachta or Raidió Rí Rá or, even Radio Two; or you could switch the lights off; or play your favourite songs from a playlist; or…

Today was the first step and contact in getting there. Pádraig got the switch mounted on his wheelchair so that we won’t have to hold this in our hands any longer. And it’ll be always in the same place.

He tried that out: long beeps, short beeps, really loooooong beeps. (You need to know that the pitch of this bleep is similar to what you would hear if you had a tinnitus; and that he was making deliberate use of the switch most of the afternoon on the ward.)

A technology firm, Tobii Dynavox, will visit the NRH later in the month and Pádraig got a special appointment with them. Can’t wait.

In the meantime, Pádraig is making huge progress not just using his ‘left foot’, but also his hand; with a much smaller and more complex switch. It’s a recordable switch: you press it once, it ‘says’ what was recorded, and you have to release it before you can press it again. In this short 1-minute video, I ask Pádraig to press the switch (it says ‘ja’ when he presses it) when he hears a certain number. (Sorry, it’s all in German:)

Pádraig is getting loads of visitors which is absolutely brilliant! Two last night, one in the morning and another two tonight. He must be absolutely thrilled to see how much people care about him!

The visitor this morning is also a nurse who will be helping us with An Saol. There is really quite a bit of momentum building up with many people not ‘just’ saying how appalled they are with the lack of timely, proper and sufficient help and services, but who are also prepared to do something about it. (I need to say here that what staff are doing for and with Pádraig in the NRH, given the resources at their disposal, is really good – but access to the NRH is, of course, very much limited as we know. So much more needs to happen.)

Other friends have been volunteering to start working on a bit of a PR campaign in Ireland and abroad to spread the word that An Saol’s first volunteer meeting is about to happen, that An Saol will be hiring therapists, and that there are two fundraising cycles being planned for next year in the US.

It has been a good day today. And I’ve got this feeling that there will be many more good days to come. (Never thought I would say this ever again.)

Pádraig is doing well and was quite alert today, with both eyes opened. What I wouldn’t give to be able to find out from him what he is thinking, what he would like to do, how he thinks we could help him best. We keep practising with the buttons but it’ll take time before he’ll do any kind of serious spelling.

It would be hard to find anybody, and I mean *anybody* in Ireland who would say that the health authorities here are delivering a good service. To the contrary. I have heard french people saying that when they get sick, they don’t call a doctor or an ambulance, but a taxi. To the airport.

In a press release yesterday, the Neurological Alliance of Ireland, representing dozens of organisations, quotes one of the co-authors of the national strategy for neuro-rehab as saying that since the report was published the situation did not get better, it go worse.

On a personal level, we experience this too.

But I have decided not to waste time trying to convince people who do not want to hear that far better services are needed for persons with severe brain injuries. I will be working with people who want to change this outrageous situation. And there are many of them. In Ireland and all over the world. They will be the change.

Yesterday afternoon, four young lads from Colaiste Eoin, Pádraig’s old school, came over to help me to fill the skip and to clear the back garden to get ready for a new shed. We managed to get everything out into the front garden and on the road, but had to pull stuff back from the footpath into the front garden when the skip was badly delayed. But then, two other friends (I had never met before) turned up this morning to fill the skip (which had arrived late last night). Just when we were finished, the new shed arrived. I spent the afternoon clearing everything up. It’s great to see everything coming together.

Today, the Neurological Alliance Ireland published a press release in which they say that the “Government Strategy on Rehabilitation Delivers Nothing” – not even the promised draft (!) implementation plan.

They say that the National Policy and Strategy for the Provision of Neurorehabilitation Services was published by the government in December 2011 with a three year implementation period (2013-2015). Nothing came out of it.

Why are you not surprised? – The sad truth is that everybody would have been surprised had anything, anything at all, resulted from this ‘strategy’ – because it lacked the most essential data, did not include any targets, and had not been allocated any resources.

This is at national level.

Our own personal experience, at a personal level, it is not very different. First, Pádraig needed to leave Ireland to get the treatment and therapies he needed, otherwise he would have had to wait a year for admission to the NRH. That wait would have been in Beaumont Hospital, in an acute neurosurgical ward. Having left the hospital in Germany, having lived with us for almost nine months, he came back to Dublin, but had to be admitted to a hospital to be assessed for a home care package. Nine weeks later, we were told that applications for equipment and carer-hours are being submitted based on the NRH’s assessment, but there is no similar plan for therapy. Carers will be trained and ‘community’ therapists have been trained to support the carers. There is talk about Pádraig being treated as an outpatient in the NRH, for a period of six weeks, after a certain period imposed by a waiting list. There is talk about referring Pádraig to other services. There is talk about taking up with the HSE the fact that nursing homes receive money to provide therapies for their patients – but not home carers.

Why are you not surprised? – The sad truth is that everybody would have been surprised had anything, anything been provided in terms of professional therapy for Pádraig at home. Instead, people talk about ‘maintenance’, even palliative neurological care – being provided by the carers. They talk about very limited resources being available, not about what Pádraig needs. It almost sounds like, and I know that I am being cynical now, as if Pádraig should have been ‘assessed’ by the HSE accountants, not by specialist therapists.

I am convinced, and would like to be told if I am wrong, that any professional would agree that, given the phenomenal progress Pádraig has made over the past two years, Pádraig’s continued progress needs to be supported professionally, with professional therapists.

Yet, while I have seen plans and proposals for care and for equipment, I have not seen a plan or a proposal for therapy.

Looks like as if this has to be done outside of the system. Because, in the words of the Taoiseach, the Irish Prime Minister, this health ‘system’ is broken. And nothing is being done to fix it, at least not in relation to neurological rehabilitation – there isn’t even a plan. After five years.

But let’s stop moaning and let’s do something ourselves. Check out An Saol  and its first Meeting of Volunteers. ‘Like’ An Saol. Attend the meeting.