What is it that we want? What is the “ask”?

Tonight, the Lotto jackpot will be 18m euro. The demand for tickets today was such that it temporarily crashed the system. On the news, they asked people what they would do with the money and one lady said that she would get the best treatment possible for her autistic daughter.

It seems that you have to win the Lotto to get the best treatment, rather than it being what society affords to those who need it, rather than it being a human right. At least this is, it seems, what some people believe.

I most emphatically disagree and will refuse to play the Lotto to get care, equipment, and therapy for Pádraig – and not because of the impossible odds (you’re more likely to die in an aircraft crash than winning the lotto) but because it shouldn’t be up to Lotto winnings to finance anybody’s treatment.

So, whatever the “ask” might be – it will not be financed by a Lotto win.

Tonight, the HSE are having a meeting – we believe with the carers and Pádraig’s doctors (but without us) – so that “Team Pádraig” will have an opportunity to get to know each other. I suppose they will get to know us and we them overtime.

In the meantime, we are planning the start of Pádraig’s care for Monday of next week. By then, it’ll be 17 weeks since we arrived back in Rosslare, meeting his friends at the port, and having one of the most wonderful breakfasts ever in the fantastic Kelly’s Hotel in Rosslare, followed by lunch and dinner and another breakfast.

The “ask” for Pádraig is care, equipment, and therapy. The “ask” by An Saol for all of those with severe acquired brain injury is care, equipment, and therapy.

By now, 24 hours after having been sent to Irish parliamentarians, the following have signed the An Saol 2016 election pledge:

Tony mc Loughlin	Fine Gael
Senator Sean Barrett	Independent (Trinity College constituency)
Averil Power	Independent
Senator Mary Moran	Labour
Richard Boyd Barrett	People Before Profit – Anti Austerity Alliance
Charlie Mcconalogue	Fianna Fáil
Matt Carthy MEP	Sinn Fein
Tom Fleming TD	Independent
Maureen O’Sullivan	Independent
Ruth Coppinger	Anti-Austerity Alliance

Please pass on the pledge to your Irish parliamentarians and ask them about it when they’ll knock on your door. Another “ask”:)

In Ireland
People have told me: “Reinhard, you’ve been living in Ireland for 30 years — and you *still* don’t know how things work??? I’ll share a few stories with you about living in Ireland for 30 years. A long time. So, get ready

How are you?
In one of my first jobs in Ireland, on a Friday afternoon, I walked by one of my colleagues who wasn’t too busy. As I walked by, we looked at each other and, with a smile on his face, he asked me: “How are you?” — for the first and last time. Because i sat down in his cubicle, got myself comfortable and told him about what had been bothering me that day. He had asked for it, in a way, but hadn’t counted on a reply beyond “grand!”.

German Music Tip
I’m sure you’ve been missing this. And I just can’t explain, even to myself, why I never had though of Nina Hagen’s “Heiss” – Ja isses denn ein Wunder… And this here is a Rockpalast Live version from Dortmund’s great Westfalenhalle. Total Heiss!

 

Big day. – The day An Saol circulated a pledge to Irish politicians (see cover letter below, click here to sign the pledge). The day Pádraig’s home care package was approved.

Which is good news. However, they did not approve the equipment requested for Pádraig based on the assessment of several specialists, starting more than a year ago in Germany: a standing bed (the only standing device for Pádraig), a MOTOMed and arm trainer, a therapy table, a comfort chair, a power pack for the wheelchair, and a suction unit. Which is really beyond believe.

What does this mean – especially in the light of no, yes, you read this correctly: no therapy having been recommended by our National Rehabilitation Hospital to the community services?

It means that Pádraig will not be able to stand, he will not be able to exercise, Pat will not be able to push his wheelchair outside, and we will not be able to give him even the most basic of therapies / movement exercises. — Not being able to stand and not being able to exercise  – not affording this to Pádraig is just beyond what I will take.

We have heard that there might be some alternative source of funding for this. I hope to hear about this alternative by the end of the week. I think Pádraig had to wait long enough.

Pledge

Tonight, I sent an email to all TDs, Senators, and MEPs on behalf of An Saol, asking them to support those affected by severe Acquired Brain Injury (sABI).

Thank you to Therese Caherty. Without her help we would not have been able to send this out. Thank you also to the families who contributed their stories and that of their sons to this email.

Please pass this on to your families and friends, to people you might know in the media or in politics, and ask them to use this to question candidates in the upcoming election campaign.

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Pledge your Support to Survivors of severe Acquired Brain Injury (sABI)

[Please click here to pledge your support.]

They cannot look after themselves. Their families are trying as hard as they can, but they find it hard to cope. For people with severe acquired brain injury, their uphill battle is one they will never be able to win alone. The survivors and their families need your support to get to a point where they can live their lives in dignity and with respect.

As the 100th anniversary of the Proclamation of the Irish Republic approaches, Ireland is a long way away from “cherishing all the children of the nation equally”. Survivors of severe Acquired Brain Injuries (sABI) are not cherished – they are neglected.

Instead of receiving intensive care and therapy in line with accepted international research and practice, families are told that all their children require is “hydration, sedation, and nourishment”. They are told that their children are “lost causes” on whom valuable resources cannot be wasted. Outrageously, young survivors of sABI are sent from college or their first job to nursing homes where they are put on a “maintenance” programme, deprived of a life of dignity with respect, neglected beyond belief.

Each story of each of these survivors, the way they are being treated by the health system and by society, would move a rock to tears and is utterly outrageous.

Taoiseach Enda Kenny, replying to an open letter just under two years ago, agreed that “the health system that we have here at the moment is unsatisfactory; it is not able to provide health care for its patients when they need it most”.

HSE director Tony O’Brien has been quoted as saying that there is “no plan, no money and no vision for health in Ireland” (Editorial, Irish Times, 04 January 2016), with the editor adding that, “somewhat bizarrely, Minister for Health Leo Varadkar agreed with him”.

We, the families of survivors of sABI, working together in the An Saol Foundation, are asking you as a candidate in the upcoming general elections to pledge your support for the rights of survivors of sABI.

Please click here to pledge your support.

We have included the stories of three survivors of sABI, as told by their families (see below).

Should you have any comments, questions, or suggestions, please contact us directly either by phone or by email.

Help us to change the hearts and minds of people about sABI. We look forward to hearing from you.

Please click here to pledge your support.

With kind regards,

Reinhard Schaler

CEO, An Saol

About An Saol

We are families, friends, and supporters of persons affected by a severe Acquired Brain Injury (sABI). We have established the An Saol Foundation as a non-profit organisation. An Saol will afford every opportunity to survivors of sABI to live their life with dignity and respect, to continue to improve, to regain as much independence and self-determination as possible, and for their injuries to heal, supported by adequate therapies. We will offer advice and support to families and friends affected by sABI.

Web: www.ansaol.ie   /  twitter:  @an_saol  /  Facebook:  http://bit.ly/AnSaolFacebook    /   phone: 087-6736414

An Saol Foundation, Carmichael House, Brunswick Street, Dublin 7.

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Robert Flynn – our son’s story

The significance of 9/11 is such that it will always be remembered but 10/11 is another date that The Flynn family will never forget as that was the date our lives changed forever.

At 9.30am on the 11^th Oct, our son Robert, then 32 and the youngest of four children, was returning from Las Vegas to Kingston, Jamaica, where he was based, when he suffered a Cardiac Arrest in the departure lounge of Miami International Airport.  Robert was taken to the Metropolitan Hospital and he remained unconscious and on life support until the 26^th Oct, when he opened his eyes for the first time.

He was flown to Dublin by air ambulance on the 8^th Nov and admitted to the Mater ICU on the 9^th Nov and to the day we die, we will always recall this as our first and biggest mistake. He was later moved to the Sacred Heart unit where tests were carried out to establish what had caused the cardiac arrest and this was confirmed as LQT3, one of the categories of sudden arrhythmic death syndrome (SADS) associated with young men dying in their sleep.

It is now over 4 years since that fateful day and since leaving the Mater, Robert has been in the Wellington Neuro Rehabilitation Unit in St John’s Wood, London for 5 months, the NRH in Dun Laoghaire for 5 months, St Vincent’s Hospital 5 times and in Hamilton Park Care Facility for over two and half years. During his time in the care facility, we have employed our own physiotherapists, occupational therapists, speech and language therapists to mention just a few.

In July 2015, we embarked on another journey when we brought Robert to Pforzheim in Germany where he underwent 3 months intensive therapy, getting six hours of therapy a day. While there, he worked with all the different disciplines including Speech and Language Therapy and made progress but since his return on the 18^th Oct, he has not been receiving any therapy and already we can see the negative effect this is having. The overriding aspect of this story is that Robert has received all his Rehabilitation Therapy outside of Ireland or from private practice therapists in Ireland and funded privately. The lack of facilities for young people with ABI in this country is nothing short of criminal and the HSE solution to the problem is to place them into Care Facilities which is just another name for Nursing homes.

Young people should not be in Nursing homes!

Brendan & Helen Flynn

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Pádraig Schaler – our son’s story

On Thursday morning, at 10am, on 27 June 2013, our son Pádraig was knocked off his bicycle as he cycled to work on Cape Cod. He had planned to spend the summer on a J1 visa while he considered which of his many plans he would pursue, having just finished his undergraduate studies in Trinity College Dublin. Pádraig was a champion swimmer and studied Irish and History at TCD. He is well known in Irish-speaking circles because of his role as Reachtaire of the TCD Cumann Gaelach, his involvement with many Irish language activities, and his radio broadcasts.

Pádraig was brought to Cape Cod Hospital in Hyannis, where he was operated on immediately. He had received a devastating brain injury and doctors did not have much hope for his survival. After two and a half weeks in Cape Cod Hospital, we brought him home. He was admitted to Beaumont Hospital on 15 July, where he remained in a coma.

The only facility in Ireland providing early neuro rehabilitation is the National Rehabilitation Hospital (NRH) in Dún Laoghaire. The total waiting time for one of the three beds available in Ireland for patients in Pádraig’s condition was one year and the time limited to three months. German consultants we contacted described this as ‘grotesque’ and ‘unethical’. They said that Pádraig needed early intensive neuro-rehab immediately. British consultants we spoke to confirmed this need.

In November 2013, we brought Pádraig to Germany where he received early neuro rehab in a specialized hospital for about 14 months. He was then discharged home and lived with us in rented accommodation where he received about 14 units of therapy a week. He spent six weeks in an intensive therapy centre before returning home to Dublin at the end of September 2015.

Since his devastating accident, Pádraig has made tremendous progress because of the care and therapy he received. His tracheostomy was removed, all food intake is now oral, and he has made dramatic progress in terms of communication. Pádraig still requires 24-hour care and regular intensive therapy.

Upon his return to Ireland and in order to be assessed for a home care package, he had to be hospitalized again. Although we are very hopeful, no final decision about his home care package has been made. Even if approved, this home care package will not include any therapy. In fact, the NRH declined to even make a recommendation for therapy to the community.

This is contrary to best international practice, it is contrary to published, widely-known, and well-understood research, and it contradicts international agreements such as the UN Convention on the Rights of People with Disabilities. It is shameful for a modern and civilized 21st century State to neglect its citizens in such a way and to deny them a life with respect and dignity.

Patricia O’Byrne and Reinhard Schaler

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David Cahill – our son’s story

David (at age 21) acquired a serious brain injury as a result of multiple cardiac arrests while on holiday in Crete. David was airlifted home to Dublin and spent some time in an acute care hospital (Connolly Hospital in Blanchardstown).

He spent 12 weeks in the NRH (after a very long waiting time). 12 weeks was and still is the maximum amount of time a patient can spend there. Then he was moved to a nursing home in Balbriggan. Since this time, we have extended our house to allow David to come home at the weekend where we look after David 24/7 with just two hours of help.

What David needs?

David is now 28. He has been assessed by various neuro-rehabilitation experts (from a German private company). They are of the opinion that there is great hope and chance of quality of life improvement for David if he is provided with consistent and correct neuro-rehabilitation. However, there is literally no appropriate place in Ireland where this exists. At present, David receives 1 hour per week of occupational therapy in the nursing home.

A nursing home as you will hear from other families is not an appropriate place for brain injury patients, particularly in relation to getting the required treatment. Most of the time, we have to show the staff how to deal with and care for David. In addition the nursing home is totally understaffed and morale among staff is low as they are under constant pressure and do not have the required skills and training to give our son the best rehabilitation care.

In addition the HSE spend vast amounts of money to the nursing home to accommodate our son – this is money which could be properly invested in appropriate and effective care and resources which would benefit all people like David.

This is why we have come together with other families under this new charity group. We want to show the Health Service Executive there is a better way to treat brain injury patients. We as the parents of our son, who spend more time than any nurse, doctor, expert with him know what our son needs. We want an opportunity to prove this to the health care experts in the hope that they will sit up, pay attention and respond in a proper and humane way.

Here is just one recent article which conveys our and an unknown number of similar stories:

http://www.healthnews.ie/neurology/why-neuro-rehabilitation-is-vital-for-brain-injury-survivors

Catherine and Peter Cahill

[Please click here to pledge your support.]

We were out today.

One of Pádraig’s friends had arranged a meeting with a civil rights strategy group in Belfast. So I had a day out. It was great.

Pádraig also went out to the post office, to his GP, and get a hair cut. All really normal things of which you don’t realise the value until they’re gone.

Later in the week, I will meet a business man who might have some room for An Saol’s Sara Walsh.l I’ll keep you posted!

This is getting boring and un-exciting. No drama. No controversies. No emotions. No real change in anything. No German songs or sayings. Nothing. Except a dry, boring, pretty predictable, sometimes a little self-indulging update on what is important to me but not really to many more people out there. What do you think? Who is interested in the daily grind, the daily ups and downs, the daily routine boredom, even if it is so tough, so heart-breaking, so infuriating, so full of hope, so exciting, so spectacular — for me?

Today I thought, it’s almost time to write the book. Hopi-tales unplugged. Written with only Pádraig in mind, not anybody else. And if someone feels hurt, they probably should. And if someone feel flattered, they probably should too.

Today I thought, Pádraig’s accident sent us all on a mission, including himself. Here’s a new meaning of lift, Dreamboater. You’ll sail down the stream in this construct that wasn’t ever meant to make it.

Today the question is a bit more difficult than yesterday: What have “idiot”, “nice”, and “date” have in common? They can all be spelled using just the first two lines of the English frequency alphabet. And… Pádraig spelled these words today. What will he write when he’s learned all the lines of this alphabet? What is it that he’ll tell us?

He also remembered that today was Sunday.

Today, I fixed the dates of the Californian fundraising cycle with the friend who’ll accompany me. We’ll buy the tickets next and start to get the “operation” transformation going.

Tomorrow, I’ll go with one of Pádraig’s friend up to Belfast to get advice on strategy for An Saol.

 

What do start, tall, told, and street have in common?

We went through the months and, yes, and of course, he knew it was January.

He didn’t know what date it is today. We reminded him that last Tuesday, 12th, we had a birthday in the family. So if Tuesday was the 12th, what date is it today? 16th. Yes.

Tonight I made a simple dinner. We had it first. And then he had it. Different consistency. But it was the same food. And he liked it.

Then we were talking about the trips we had been on. There was this insanely long, out of this world train trip to Lourdes. Did he want to go again this Pentecost? Of course he does!

It was Pádraig at his best: adventurous, yearning for life, curious.

And bright: great at his spelling.

It’s official.

Today, Pádraig has been discharged from the NRH.

He’s been there for almost 16 weeks to be assessed for a home care package that would provide for help so that he and us could manage at home. That has now been submitted as well and everybody expects a positive decision real soon.

It feels strange, though.

We got to know loads of people in the NRH. Between cooks, doctors, social workers, therapists, nurses, and care workers there were dozens of people looking after Pádraig. Sure, the ‘H’ in NRH gives it away: it’s a hospital. And, as we’ve learned over the past two and a half years, hospitals are institutions with procedures, routines, hierarchies, and all sorts of other difficult-to-deal-with stuff. But, as hospitals go, the NRH is a good place. And as staff in hospitals goes, they’re good, at times even brilliant, at times not what you’d expect. I’m sure I wasn’t (always) like what they’d expected. There were sometimes really difficult situations, there were really deeply understanding moments, and there was even banter and fun. What I appreciate is above the table, straight conversations. I recognise that this is, to an extend, possible, but that there are limitations to this, in a hospital environment. Although, personally, I don’t see a reason for it. Overall it’s such a charged environment, huge emotions, plenty of vulnerable people, loads of on-the-edge stuff, risks, room for mistakes, room for brilliance, room for disaster. It’s a really difficult place to develop trust, even though this is the most important ingredient of a hospital stay. But you know that when you have an accident with your car your insurance demands from you that you never admit that you were at fault. It’s a bit like that too when you treat patients, I guess. The thing is that we all know what works well and what doesn’t. I have been ready to talk about our perspective of things, which might be incomplete and mistaken, but worthwhile considering I would have thought, I have loads of ideas of stuff that can be done, even as things stand, with the existing resources. So, let’s talk, right? There were amazing things that happened in the NRH. Pádraig will, hopefully, be back as an outpatient, after a bit of a waiting time.

Tonight, we “Don’t look back“, though. We look forward to an exciting year when really exciting things will happen. With no boundaries. No restrictions. No ‘that’s the system’. No ‘you won’t be able to change that’. But with power, perseverance, positivity, can-do, love, energy, lust for life, friends, music, travel, Dreamboaters.

Loads of things happened over the past two days.

Pádraig did the equivalence of a one-person table quiz about Kodaline. He refused to answer the first question which was, admittedly, too simple to merit an answer: do you spell Kodaline with at “K” or a “C”. I mean…. He then had all the answers right. Which instrument one of the guys plays. Whether there were from Sallynoggin or Swords. How many of them made up the group. It was incredible to see him remembering all these details.

Then today there was a neurologist assessing him. Loads of therapy. A long day.

Also got some more suggestions for possible space for An Saol’s therapy centre – at least some temporary space, but some hints also pointed at potential permanent space. Will follow up on firm up over the next days.

Met the co-owner of a bike shop who will look around and help me with some sponsorship for the cycles.

Tonight three of his friends came for a visit. Being home makes all this so much easier.

I’m still in awe of his friends. They really are absolutely and utterly incredible people, the likes I’d never met before!

Tired and ready for bed!

I didn’t believe it and, I’m sure, you won’t believe it either. Especially if you live in Ireland.

First, a bit of background information:

Not such a big surprise here. While EU countries cut their health spending per capita by 0.6% between 2009 and 2010 as a consequence of the economic crisis, Ireland cut its health spending by a massive nearly 8%.

But here is the mega surprise: Even after (!) those massive cuts, Ireland’s spending per capita was 2,862 euro – way above the EU average of 2,171 euro AND just below that of Sweden (2,894 euro) or Germany (3,337 euro) which has a much ‘older’ population than Ireland and would, therefore, ‘naturally’ have to spend more on health per capita.

So, Ireland spends as much as Sweden on health care, and not that much less than Germany. Yet, we all agree, including the Taoiseach or Prime Minister of the country, that health services in Ireland aren’t quite what is needed, to say it politely.

What does that mean? – Even a non-expert can draw the conclusion that there must be Massive (with a big ‘M’) inefficiencies in the Irish system. What other explanation could one have to explain that hundreds of people have to spend the nights on trolleys in accident and emergency. Or: why there is NO therapy for persons with serious acquired brain injury living at home – and almost none for those in nursing homes. Nursing Homes for the young ?!

Here’s a task for a new government. Here’s something each of us should tell the candidates who will come knocking at our doors, looking for a vote.

Pádraig is home. But without a home care package approved. Without the equipment he needs approved, never mind being ordered. We’ve been assured that this will all happen soon. In the meantime, we’re driving to the NRH most days of the week to get some hours of therapy for Pádraig. He’s fine, we’re less worried, but we need some routine, some re-asurance, a more regular day.

(Here is the link if you want to read up some details on health spending.)

Days go by and you wonder whatever happened to them. They become months and years. Then you wonder whatever happened to all those years. You start telling stories about the past, how different it all was. The things you worried about almost don’t count, in hindsight.

Pádraig is home.

Two great friends of Pádraig’s came for a visit tonight. Pádraig’s smile when he sees them and hears their voices is contagious. It is brilliant to see him being so aware of what is going on around him.

What he needs is regular and extensive therapy – as do all the other people with severe acquired brain injury.

Tomorrow, An Saol’s letter to politicians will go out asking them for their stance on the issue. It will be supported by the ‘stories’ of three survivors as told by their parents. It’ll be interesting to see the reaction…

Still looking for adequate space for An Saol’s Sara Walsh Therapy Centre. If you can help us finding something, even temporary, please let me know!

This week, serious preparations for the first big fundraising cycle from Los Angeles (Hollywood) to San Francisco (Nappa) are going to start. We will need to plan the route, contact cycling clubs on the west coast and ask for their support, arrange press conferences and meetings (at schools?), and get in touch with the Irish communities on the West Coast – we might even find a celebrity patron! Can you help with any of this?

15 weeks ago, Pádraig, Pat and I were in Kelly’s Hotel in Rosslare, having the most wonderful dinner in a brilliant restaurant with the waiters and the chef preparing the most delightful food for us and especially for Pádraig. Tomorrow, it’ll be 15 week that Pádraig is being assessed. That is considerably longer than the ‘standard” stay in the NRH of three months. – Why it has been taken so long is an absolute mystery.

I, I will be king
And you, you will be queen
Though nothing will drive them away
We can beat them, just for one day
We can be Heroes, just for one day