Just after 6am, I heard the bin men coming down our road emptying those big bins left in front of the houses on our street, one by one, into their huge truck.

It made me think.

What would we say, how would we react if one day, the bin men with their huge truck didn’t show up. For whatever reason: maybe one of them was sick, the other went on holidays, and a third had decided he could not do these early hours anymore for personal reasons.

What would we say if we went to the airport to catch a flight and were told the flight had, unfortunately, been cancelled because the pilot had not shown up that morning but texted in that he had had a bad night and couldn’t possibly come to work?

What would we say if busses did not run on Saturdays and Sundays because although drivers had been hired to cover the weekend shifts had given their notice that from now on they could only do weekday shifts?

What would we say if any of the essential services we so much depend on every day, such as public transport, police, ambulance, hospitals, gas and water emergency, were not available one day because some individual staff were not available – for whatever reason?

There’d be war on the streets.

Yet, any of the above has happened to Pádraig. The service provider and the service commissioner allow agreed shifts to remain uncovered.

It seems that what is right and what is wrong is often determined by the number of people who shout. You can be ignored, left behind, and abandoned – as long as you are the lonely voice in the desert no-one is going to hear or listen to you, never mind care about your needs.

Today, Cystic Fibrosis sufferers and their families celebrated because the Government and Simon Harris in particular had succeeded in agreeing a deal with drug manufacturer Vertex that will give them access to vital drugs, such as Orkambi and Kalydeco. The women (!) who had led the campaign that ultimately led to this deal were on today’s RTÉ Radio One Ray d’Arcy show. They went out of their way to thank Ray and other presenters, among them Joe Duffy and Claire Byrne, for their support which made this groundbreaking deal possible. – It seems that health policies are determined by media pressure and that nobody sees anything wrong with that. You have the media on your side, the sick will get what they need. You don’t have the media on your side, you can ‘safely’ be abandoned, your children can be made a ward of court, and necessary treatment can be denied.

I think there’s something fundamentally wrong with this line of thinking. Wouldn’t you agree?

(However, I hear you thinking – if that is what it takes???!!!)

Too many things going on, too tired to write, more tomorrow.

Love – Loss – Life, a play put on by students of the School of Nursing at DCU and RythmRoomDubin working with disabled (enabled?) actors, was Pádraig’s highlight today. He went up to DCU for a lunch time performance in the famous Helix Theatre and enjoyed not just a really good play, but also witnessed the proof (if that was needed) that there are things we all have to deal with in our own way: love, loss, life.

My take away was one of the last sentences in the play: “Hearts were made to beat, not to be broken”.

Some good news on a different ‘front’: Later in the week, I will meet with a senior legal expert to explore in a very informal way how the rights of survivors of severe acquired brain injury can best be reclaimed.

Ruairi Cotter broke the story on 01 March in The Sun, today Wayne O’Connor picked up on it in the Sunday Independent, tomorrow morning it will be an item on RTÉ’a Morning Ireland:

Over 200 brain and spinal patients face agonising wait as beds closed
Financial issues and ongoing lack of staff and resources blamed as patients are left in limbo by shutting of hospital beds and units
More than 200 patients with serious spinal and brain injuries will face a longer wait for treatment after the closure of beds at the National Rehabilitation Hospital.
A lack of finance and resources is being blamed for the closures as the hospital, in Dun Laoghaire, Co Dublin, does not have the required number of staff to manage increased patient workloads.

But there was another ‘item’ in the Irish Times last week that was, I believe, much more serious and even more disturbing than the incredible bed closures in the NRH.

Mary Carolan, the Irish Times court reporter, had three articles over as many days on a case the HSE has taken to the High Court. (Here is a link to article 1, article 2 and article 3.) The HSE is basically asking the High Court to allow its doctors not to resuscitate a young man with a severe acquired brain injury and not to up oxygen on his respirator – should this become necessary to save his life, against the wishes of the parents. The young man sustained the brain injury during treatment in a hospital and the parents have taken a negligence case against the HSE – which would become pointless, should the young man die. In the meantime, the HSE had made a successful application to the High Court to make the young man a ward of court as it could not reach agreement with the parents on the course of treatment, including resuscitation.

It is also important to know that the parents have seen improvements, while the doctors predict a worsening in the condition of the young man. A neuropsychiatrist has determined that the young man is conscious, in a state of minimal consciousness, and that he can follow commands. Contrary to what modern research tells us (have a look at what Joseph Fins of Cornell says in his book “Rights come to Mind”), and comparing a prognosis to looking into a crystal ball, his doctors believe that the young man has no chance of getting better.

Do you find all this hard to stomach? – If you do, you are not alone.

This should be a huge case: the health service actively planning to allow a conscious person to die by denying him live-saving treatment, and the President of the High Court admitting this case and seriously considering it. All this against the wishes of that person’s parents and while there is a negligence case against them being heard in the courts. And all this against the background of not one place available in this country, not even in the NRH, where this person, being on a respirator, would have been able to receive the neuro-rehabilitation that he so desperately requires, the treatment that would give him a chance of recovering from his injuries.

Where are the Human Rights lawyers, where is Amnesty International, where is the human rights movement that would make cases like these public, that would make sure that even someone with a severe acquired brain injury receives the treatment and rehabilitation that he has a natural right to?

Is it right, could it be right to allow a conscious person, even if he is only in a minimally conscious state, who cannot decide for himself, to die against the wishes of his family because the organisation looking after him believes it would be “in his best interests” – while this organisation is already being sued for negligence because the brain injury happened when that person was in their care for treatment of another illness?

I mean, …. come on guys! There is a ‘right’, and there is a ‘wrong’! And let’s not confuse the issues.

Back home and off to a 60th birthday party a good friend had invited us to on Baggott Street. He had asked his friends to donate whatever they had planned to give to him as presents to An Saol instead. What a very generous gesture! What a very lovely evening!

But  – here are some last (moving) picture of the first ever first leg of he Camino Celta by anyone ever!

Yes – we can!

Watch this space for the second leg, starting on 22/23 April from A Coruña!

We made it.

Pádraig has become the first person, not just the first wheelchair user, to complete the irish leg of the Celtic Camino, to be continued on 22 April with a walk from A Coruña to Santiago de Compostela.

What an achievement!

Thank you to all who walked with Pádraig and all who help and supported us to make this happen!

Dreamboaters! Tonight, in our dreams, we’ll set off sail to A Coruña to get there the evening of 22 April! We’ll start walking from the Church of St James in the city on 23 April!

Men wanted for hazardous journey!

Every day counts – and today was an absolutely brilliant day!

I’m shattered.and overwhelmed.,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,

This morning, Pádraig had a visitor who brought Pilgrim’s Passports and Connemara Shells, the likes carried by many pilgrims on their way to Santiago. A native Irish speaker, he chatted to Pádraig and got one of those big smiles reserved for very special visitors. – All part of the excitement of going to Dingle today in order to get ready for our 2-day walk tomorrow morning.

In the meantime, we finished our 4 1/2 hour drive across Ireland and arrived in Dingle. We just missed a lady working with the Kerry Camino Committee who left all the information for the Kerry Camino for us. Also caught up with family who had helped to arrange accommodation for Pádraig and us here in Dingle and had a great evening meal in the Pub.

Can’t wait for tomorrow!

Check out and share the Facebook page for Pádraig’s walk.

You must have been waiting with almost unbearable curiosity to find out which word Pádraig wanted to spell yesterday. I must say that I thought about it all night. A German word, beginning with “B”.

So, the first thing I did when his last PA had left this morning, was to sit down with Pádraig to spell the rest of the word.

Ok, most of you know Pádraig or have got to know him a little through this blog (I hope). That’s why expect that you will not be too surprised to hear that the first thing Pádraig told me was that he didn’t want to spell a German word beginning with “B” anymore. He had changed his mind. The word was to begin with an “H”.

It was so funny. It was one of these moments that I felt really really felt so close to him and knew he was there right beside me.

The next letter was an “I”. I then noticed that he had a bit of a problem distinguishing between the “M” and the “N”. So I asked him, could I guess the remaining letters – which is how we spelled the word “Himmel” together.

If you have a bit of German then you know that “Himmel” can have (at least) two meanings: ‘sky’ and ‘heaven’. Pádraig confirmed that he meant ‘sky’ and told me that he was wanted to see loads of it today and during our walk along the Kerry Camino on Thursday and Friday.

We must put the rights of disabled people at the heart of our society. We cannot, and must not, allow the next twenty years to be a repeat of the past.
David Isaac, chair of the EHRC

What David Isaac, chair of the British Equality and Human Rights Commission, said at the launch of the most comprehensive analysis of the rights of disabled people in Britain echoed in my mind all day. He added, “They must have the same rights, opportunities and respect as other citizens.”

Ok, I thought, fair enough. But (and we all know there’s always a “but”) – But what if they are treated as if they were already almost dead? What if more than 60% of them are diagnosed wrongly as being in a permanent vegetative state, without conscience? What if the only treatment afforded to them is water, nutrition, and medication? What if families are told not to waste their hard worked for fundraising money on their loved ones but go to the Canaries instead? What if they are told by the experts that therapy would be wasted on them?

Would it be time to “trying to petition for improvements”? Or should we bring a case to the United Nations Commission on Human Rights, the European Court of Human Rights, or even an Irish Court?

I know – improvements are coming. But: for those affected every day counts.

And at the moment we are loosing too many of these precious days. I am not seeing progress being made, agreements being honoured, phone calls, emails or texts being returned, despite an agreed pilot project.

Es ist zum Mäusemelken!

Pádraig did it before, but not at home: walking. It was only a few steps, ok, but so what? I was helping him to stand, his physio helped him to move his feet. Magic!

Pádraig had done this before too: spelling. Today, though, it didn’t work. He wanted to spell a word. We agreed on that. We used the Tobii to read him out the frequency alphabet. Apparently, the first letter of the word he wanted to spell was not on that list. I asked him, should I read out the list. He said yes. But apparently, I did not read out that letter he was looking for. When I asked him, should I read the list out like the ‘normal’ ABC alphabet, he said yes. Again, the letter was not there. I was running out of options.

Then I remembered how much Pádraig disliked, well ‘hated’, me speaking English. So I asked him should I say the alphabet in German. He said yes and Bingo – the first letter of the word he wanted to spell was “B”. I was thinking: how stupid and slow had I been not seeing the most obvious barrier for him to spell that word he wanted to spell! – Then the door bell rang, Pádraig’s programme moved on and I pleaded with Pádraig to remember his word until tomorrow… We’ll give it another go. Auf Deutsch:)

I very much respect the work of the Neurological Alliance Ireland (NAI). In fact, the An Saol Foundation is a member of the NAI. I also very much respect the work Dr Mark Delargy, Clinical Lead at Ireland’s one and only Rehabilitation Hospital has been doing over the past decades.

Today, the NAI posted a video in which Dr Delargy expresses his support for the NAI campaign: We need our heads examined. This is what the country’s leading rehab consultants need to do: publicly support campaigns like that of the NAI.

Dr Delargy says there is a ‘disconnect’ in the system; that patients in need of neuro rehab experience ‘severe and prolonged delays in achieving access to essential rehab services’. He also says that patients do not get access to the kind of therapy they really need, that even the NRH experiences ‘great difficulty providing the international level of intensity’ and ‘difficulty to provide it soon enough and for long enough’. He concludes that on this background he is happy to support the NAI’s campaign ‘trying to petition for improvements’.

I really respect Dr Delargy’s work and his decision to do this video, and sincerely applaud it.

But me being who I am, I do not understand how he can say what he is saying the way he is saying it. – You know what I mean. What he is saying about rehab services describes a national scandal! And the conclusion, in my mind, after decades of neglect, needs to be more than trying, to petition, for improvement.

There are also a few things the NRH itself could do immediately to improve this untenable neglect of those requiring rehab:

1. The specialists in the NRH could state what the “international level of intensity” should be for rehab and what it is now – in the NRH and in the community (it’s very close to 0 in the community at the moment). That would provide significant support to those who are campaigning for more resources to be made available and for existing resources being used more wisely.
2. The NRH also could, what am I saying: it really has to make available equipment, especially highly specialist equipment, that has been donated to them by generous fundraising, to those who need it – even if the NRH itself cannot offer treatment on this equipment, other nonprofits, like An Saol, could, out of hours, even on weekends.

The above are just two simple examples.

Above all, however, we need consultants to lead. Not to tell parents any money spent on physiotherapy for their sons and daughters is a waste. But to encourage and support them to do whatever it takes to provide a quality of life for those with sABI, something they have an absolute, fundamental, universal human right to enjoy.