I AM WRITING here on behalf of the voiceless, the people lost in HSE statistics, plans, strategies and task forces. Those for whom the institutions continue to make decisions “in their best interest”.
I am not neutral on this matter. German born, I have my own collective memory about the State taking control of what is best for sick people. I also have years of personal experience as the father of a catastrophic brain injury survivor.
The truth is that the “fight for life” has become my mission in life since our son Pádraig’s accident in 2013, when he was hit by a truck trying to overtake him with oncoming traffic, as he was cycling to work on Cape Cod. He was spending the summer there on a J1.
Lack of staff and resources
On September 2 2008, the Irish Times reported that the NRH got the “green light for 235-bed facility” with the new building to be completed by 2012.
Fast forward 9 years to earlier this week, when the issue of bed closures in the existing National Rehabilitation Hospital (NRH), and the fact that the new building was never built, was raised (again) in the papers and on Morning Ireland.
The NRH, with a waiting list of 226 patients, some of whom have been waiting for more than two years, has twelve beds lying empty because “of a lack of staff”. Valuable resources are seriously under-used in the NRH, including robotic walking equipment, worth hundreds of thousands of euros, and provided to the NRH by generous donors.
The Brain Injury Programme of the NRH, the only one of its kind in the country, still has no neurologist as part of the team and has no direct access to basic equipment such as an EEG monitor, a CAT scanner or an MRI machine.
I don’t blame you if you haven’t heard about this very serious and shocking lack of resources in the NRH, because the NRH is not telling us about it.
You either find out about it yourself the hard way (as a patient or family member) or via investigative journalism.
The Strategy for the Provision of Neuro-Rehabilitation Services in Ireland
On 16 December 2011, the HSE published the Strategy for the Provision of Neuro-Rehabilitation Services in Ireland 2011 – 2015.
Towards the end of 2016, the HSE circulated a draft implementation plan for this strategy to stakeholders, which did not contain a timeline, nor a proposed budget, nor the names of those responsible for its execution. The current plan is to present such a strategy to the Minister by June of this year.
Let’s be honest: a first year business class student handing in such a plan would fail their course work. Yet, not only do we allow such a plan to pass, we engage in serious discussion about it with the authors. Are we mad?
I know from the experience of our own son that, with the right treatment, recovery, even from a severe acquired brain injury (sABI), does indeed happen. Still non-verbal, but now well able to communicate using a switch, he has told us that he is enjoying life as much as we do and passes through difficult patches, just like us.
We know from research (and so should the HSE “experts”) that once someone has regained consciousness, even a minimally conscious state, recovery can take many, many years.
Abandonment is not an option
Pádraig’s journey through life did not finish with the catastrophic brain injury when that van at speed hit his head on Cape Cod almost four years ago. It did not finish because he was determined not to let that happen.
He could have died many times over, starting at the time of the accident itself, during his time in Cape Cod Hospital when doctors were pressing us for organ donation. He could have died on his way back to Ireland with his head fixed by duct tape to a tiny stretcher, when his lungs collapsed, when a SIRS (type of sepsis) took control of his body, when deadly hospital bugs wouldn’t go away but kept coming, or from a life-threatening thrombosis that kept his doctors on their toes.
He could have decided that he’d had enough and packed it in. But he didn’t.
Pádraig has decided to get through this
Instead, in his stubbornness and single-mindedness, still being the athlete he was when he was swimming on a scholarship in Kentucky and won Irish championships, he has decided to get through this, to recover from his injuries as much as he humanly can. And I can tell you, he has never ever trained as hard as he has over the past three years.
From not being able to respond, move or control his body in any way, smell, taste, eat, drink, talk or even make a noise, from a state where we had to suction phlegm out of his throat at regular intervals via a tracheostomy tube, he has moved to a state where he can reliably use a switch to answer questions, spell words, let us know what he wants to do, eat, drink, wear, watch (movies, tv), or listen to.
We insisted on the removal of the tracheostomy and are using the PEG only for additional water (drinking large amounts of liquids still takes some time but is constantly improving).
He was the only one in the family who didn’t even catch a cold over the past two winters, and he has not been on any medication for a long time. He is eating and drinking with more ease every day. Last weekend he enjoyed lamb shank and homemade pancakes. He has been to concerts, plays, and the cinema.
He has told us that he is coming to terms with his new life, that what bothers him most are the barriers to communication, and that he will continue to work really hard on his recovery.
No part of this incredible journey has been easy
Pádraig will be the first person, never mind the first wheelchair user, to complete the newly designed Camino Celta following the ancient route his forefathers (or rather mothers) followed to visit the tomb of St James in Santiago de Compostela.
Having already completed the 25km-long Irish leg to Dingle, he will walk the remaining 75km from A Coruña to Santiago starting today, April 22. A week later, he will collect his Compostela in the pilgrims’ office in Santiago, the certificate that will give testimony to his incredible achievements, so far.
No part of this incredible journey has been easy. Not for Pádraig, not for myself and our family.
I decided to take the maximum period of carer’s leave from my job and am currently considering what I will do when the two years are up at the end of August. I have effectively started a new career, becoming a specialist in neuro rehabilitation with a focus on severe acquired brain injuries, and a social entrepreneur establishing the An Saol Foundation to support survivors of sABI and their families in their quest of a new life that is worth living.
Is this not something that the health system should provide?
I am constantly wondering is this not something that society and the health system should provide, rather than announcing new hospitals that are never built, producing expensive strategy papers that aren’t implemented, publishing draft implementation plans without a schedule, budget or assigned responsibilities, setting up task forces that meet often but implement nothing.
Article 25 of the universal declaration of Human Rights states:
Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.
I am not a judge nor am I a legal expert. But if needs be, I will become one to make sure Ireland complies with her obligations to her citizens, including those with an sABI.
A well-known Irish rehab consultant has said: “Change will come when enough families agitate. It is the families who will be able to drive change.” I’d like to think that the professions, led by consultants, also have a role here.
It’s time to lift our heads up, to stand tall for the rights of people with neurological illnesses, and especially for those with severe acquired brain injuries. Like everybody else they have a right to receive the treatment and therapies they require, to be included in society, and to live life with dignity and respect.
Reinhard Schaler is the father of Pádraig Schaler who suffered a severe acquired brain injury in 2013. He is founder and CEO of the An Saol Foundation (www.ansaol.ie). Encouraged by a rehab consultant in 2013, he started to write a daily blog about his son’s and his own personal journey through life and the world of neuro rehabilitation (www.hospi-tales.com). This month, Pádraig will become the first person to complete the ‘Camino Celta’ in his wheelchair, going from A Coruña to Santiago de Compostela, having already completed the necessary 25 km of the Irish leg to Dingle last weekend.
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