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.


 

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.


 

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 11th 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 26th Oct, when he opened his eyes for the first time.

He was flown to Dublin by air ambulance on the 8th Nov and admitted to the Mater ICU on the 9th 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 18th 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


 

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


 

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.]