Tonight will have to be a short one.

Just to say that Pádraig got a new PEG, smaller and neater than the old one that was 2 1/2 years old. We spent the day in St Vincents Hospital in Dublin today, but the absolutely brilliant news is that he did not have to stay there. He is back home, has a sore throat from the endoscopy. When everything was done, we even got some spare parts  – for some case and time in the future.

If your ship doesn’t come in swim out to it, a guy called Jonathan Winters once said. He clearly hadn’t heard about the Dreamboat. No need to swim out to it. It’ll carry you wherever you want to go. With lots of the best company. It’s this company, it’s the belief that your belief can carry you wherever you want to go. That there are no limit. Physics doesn’t come in. Medicine ain’t working on this journey. Preconceptions neither. The view goes way beyond the horizon, further than you ever thought was possible.

I believe that soon there will be more survivors of severe Acquired Brain Injury (sABI) living at home, with better support, with the right equipment, and adequate therapies. As long as that is possible. And when it is not possible, there will be a safe, homely and respectful place for them where they will feel welcome and where they will be able to live in dignity.

There will be a movement that will reclaim the human rights of those from whom these rights have been taken because their life and their humanity are not respected.

More meetings today and more meetings planned for the week. I am sure we will all get tired of meetings one day and normality will return:) Thought there was one meeting today we didn’t attend but where it was decided that Pádraig’s standing bed will be financed by the HSE. The last hurdle to take on that one is that an Irish supplier  will have to order it from the German company so that support and maintenance in Ireland will be guaranteed. Fingers crossed.

Pádraig’s and his PAs are getting on really well. It’ll take a few weeks and routine will have settled in. It’s hard to imagine at times, but it’s definitely getting there. Which is good.

It’ll be another day in hospital tomorrow for Pádraig for a PEG replacement. But hopefully, it’ll just be a quick ‘in and out’.

In Ireland: That’s interesting
Something you just said, something you are wearing, something you had cooked for your guests. Well – it’s most likely *not really* “interesting”, it’s odd, it’s ugly, it’s inappropriate, it tastes horrible — but no-one in Ireland would even dream of telling you this, people would just drop you a hint, not by telling you something is boring, but the opposite. Interesting, isn’t it? Certainly takes a while to get used to it when you would expect straight forward opinions:)

Some days just work out. Today did.

An Saol’s 2016 Pledge campaign is gaining momentum and quite dramatic reactions from some stakeholders who do not see this as an opportunity to really make an impact together — to provide a life and living environment  for survivors of a severe brain injury. The number of TD’s, Senators, and MEPs signing the pledge is growing by the day. Things are beginning to move!

Pádraig is getting on well with his PAs and it seems they are ok with him too. He hasn’t met them all (apart from that well-attended training day), but if the first couple of days are an indication, it’ll all be good. There’s still a bit of getting used to each other and getting used to the circumstances and getting used to the routine (routine? which routine?), but that’ll come.

We’re still not clear about the equipment recommended but not financed. But that will be resolved one way or the other too some time soon.

I got a phone call from my supporters in the Little Sport Bike Shop in Fairview to attend an urgent meeting (yes, another one:), with a rep. Only that this time it was the rep of a Californian bicycle manufacturer, Marin (as in Marin County). They are going to sponsor me for the two cycles in the US, Boston to Brewster (in June) and Hollywood to Napa (originally planned for around Eastern, but postponed to the autumn because my companion fell ill and won’t be able to get fit in time for Eastern). They are going to provide a first class brand new road bike along with all the equipment needed. Under one condition: that’ll I’ll raffle the bike after the cycles and pass the proceeds on to An Saol. — To be honest: I should have come up with this brilliant idea myself but then – I didn’t know they were going to supply the bike!

The best thing today, however, was Pádraig showing us, after we had asked him to do this, a ‘thumbs up’ first with his right, then with his left hand, and then proceeding to operate the switch with different fingers of both hands. Movement and control are coming back to his fingers. He is continues getting better and inspiring us. These are all small steps but so significant! And he keeps trying as hard as he possibly can. He won’t ever give up. And neither will we.

In Ireland: Big Problem Solving in no Time
From a distance, the world looks blues and green. From a distance, there is harmony. That’s probably the way Ireland, and especially the North, was looking to me. In the mid-eighties, when I arrived in Dublin, my parents thought I was moving into a war zone. People were bombing and killing each other. In my new job in a large multi-national, I talked to everybody who wanted to talk to me about religion, the North, and abortion. It was all perfectly clear how all this could be resolve — until one of my colleagues told me that I didn’t have a clue what I was talking about. That made me shut up. For a while.

German Music Tip
Otto Waalkes sings one of Germany’s best ever songs, Männer by Herbert Grönemeyer, but not about Männer (men) but “Hexen” (witches). Really, really well done.

I’ll have to keep it short. it’s almost midnight and it was a long day. It’ll be a short night.

One thing struck me today. And that is how good and caring people are. Today it was the unlikely combination of the milkman and the nurse, both showing such incredible concern and support for Pádraig when I didn’t really expect it. They hear and listen and understand with their hearts. They don’t have a system or procedures behind which to hide or which they would blame for things that are wrong.

It was also the carers who spent their first day with Pádraig. Down to earth, wanting to help and to do a good job. They all got on really well.

Finally, An Saol’s pledge campaign is really gaining momentum and is being supported by a growing number of members of the Oireachtas across all parties and the independents! Will send out a reminder tomorrow to those who haven’t responded.

I’ve started to write tonight’s blog half a dozen times.

I know what I want to say but I don’t know how. I don’t want to misrepresent anything. I don’t want to ignore all the efforts made by so many people. I don’t want to accuse anybody of anything.

But I have been thinking about this all weekend.

Four months ago, Pádraig arrived with a list of equipment for which he had been assessed, a care plan, and a therapy plan. He was then assessed again, in a hospital, by other experts, and an application was put together.

It turns out they could have saved themselves the effort. What Pádraig is going to get does not depend on what he requires (as assessed by the experts) but by the budget available.

I know this sounds controversial, is not politically correct, and will most likely offend someone reading this – but: to me it looks like as if the HSE could save themselves a lot of money doing assessments and just get the accountants to decide what what treatment one should get.

 

I went to Lidl to beat the crowd. And there it was.

The TV Simulator has arrived in Ireland!

Get one and you won’t ever be afraid of a break in when you’re out because this gadget will make the burglars believe you’re in watching the Late Late or Ray d’Arcy.

Pádraig got a really really lovely present today. Maria brought it in: a hand knit blanket , so nice, so exactly the right size, it must have taken weeks to make this. In ‘rojo y negro’ (the colours of our favourite hangout in Salamanca:).

We had a meeting with builders this morning to get the outstanding items resolved. There’s so little left to bring this project over the line! And it looks now that we’ll do this over the next week or so. And as soon as the weather will get a bit better, Pádraig’s sensory garden will be prepared.

I’ve been thinking about the last 16-17 weeks. It’a all still a bit too close for comfort what happened. A bit raw. But I think, in years to come, these weeks will turn into folklore. In their very own way, they were epic. A real manifestation of what our health system and, to an extend, our country is about. We’ll look back and mark the day the first ever standing bed arrived in Ireland. (That day hasn’t come yet, but soon will!)

We’ll look back and wonder how on Earth this country could ever have allowed it’s children with a severe acquired brain injury to be kept, or “maintained”, under intolerable conditions. Where they were hydrated, sedated, and nourished — and not much more. Because the limited resources of the health system could not be ‘wasted’ on them. When we’ll look at this kind of treatment of the most vulnerable of our brothers in the same way as we look now at child abuse that, in the past, was apparently perfectly acceptable.

Got two phone calls from Germany today, from fellow Lourdes pilgrims who both were wondering how Pádraig was getting on. One is aiming for her 60th pilgrim train – she’s done 57 already. 57! The other is in charge of the carers and got in touch to see whether I thought that her son who is currently studying in an Irish secondary school could help with Irish pilgrims. We can’t wait to meet our dear friends again who took Pádraig and us on the most wonder-ful, miraculous journey ever.

In Ireland: The Room
When I moved, many years ago, from one university job to another, bringing along some sizeable EU projects, I needed to find office space for researchers. I went filled in a form, sent it off and waited. Then I rang, Later, I emailed, and rang someone else. I talked to one of my colleagues in desperation, exhausted, loosing hope of ever getting anywhwere — when he asked: “why didn’t you tell me earlier? I know Sean. He’s in charge of the rooms, is about to retire, and he owes me one.” Next day, I had the room.

German Music Tip
Otto Waalkes, Am Arsch vorbei, Otto acts Udo ‘singing’ Udo’s original “Wenn Du durchhängst” using the story of Hänsel und Gretel — you wonder which version is better:)

People are talking about fighting battles with the health system to get appropriate treatment and care. Or they are talking about ‘taking on’ the health system. — When that system is supposed to be there to help them. Which experiences got them to the point where they felt that this ‘system’ was not their alley but their foe? When the world turned upside down on them?

I’ve still not fully understood what it means for Pádraig that he has such a good eyesight. Some of his great friends who came for a visit last night were thinking of a few cool computer games. I was thinking of reading:)

He is also getting better at the spelling and finds great pleasure especially in longer words. He enjoys the challenge.

We have had a great reaction to the pledge and have signatures from more than a dozen members of parliament in Ireland and the EU. We’ll follow up on the responses and will send out a reminder to those who haven’t replied yet. Please get in touch with your TD’s and ask them to sign the pledge.

We will prepare some question ‘cards’ you can use when the election candidates will be knocking on your door.

Another visit by HSE therapists today, as well as our GP, everybody getting ready to support Pádraig’s stay at home home. We are learning more about the HSE works and the several funding sources that exist for the one person within the same organisation. In a situation like this, quite a bit of time is spent establishing which funding source is going to pay for which service or equipment. Each funding source requires a justification for the funding, reports and quotations — material that doesn’t always seem to be passed on between all these offices and funding sources.

It’s also interesting to see that the experts in the NRH (part of the HSE) recommend equipment which will then not be supplied by the another HSE division because of budget restrictions. The request is then referred to a third division who will need a meeting, request reports, and have an assessment on whether they will be able to entertain the request. Today, I was seriously thinking about organising a fundraiser for the HSE. In the country with one of the highest growth rates in the world. No funding for basic, recommended, and badly needed equipment. – Kaum zu glauben!

In Ireland: The roofer
Someone in the family, many many years ago, wanted to get their roof fixed. I had just arrived in Ireland and was pretty clear about how you do this: you get quotes in, you compare them, and you take the best available. Then I learned that this is (was?) really tricky in Ireland. Because you had the roofer you’re always dealing with. And because you couldn’t possibly be asking him for a price. Because if you did, you’d just imply that you didn’t trust him — otherwise you wouldn’t ask him about the price. So me, being German and new in the country, ignorant of all of these issues, was sent out to ask for the price….

German Music Tip
Nina Hagen & Udo Lindenberg, VOPO live concert from Berlin’s Tempodrom in 1989. VOPO stands for Volkspolizist, the people’s police of the former GDR. And this performance is pretty unusual.

We were afraid to find out. But we have always been wondering.

Today, two and a half years after his accident, Pádraig had his first formal eye test which confirmed that he has 20/20 vision on both eyes.

Nobody had ever bothered to do this eye test. Maybe because they though ‘what does it matter?’

Today, we also learned that the NRH does have an orthoptist (like an eye therapist) but no ophthalmologist (eye doctor). The same way it does not have a neurologist.

We had been wondering whether we could ever be happy again after the accident happened. Today we are over the moon!

Is féidir linn!

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.]