Some brilliant stories tonight – unfortunately, I can’t tell them, I’m too tired. My eyes are closing by themselves and my hands press down the keys on the kyd

Tomorrow will be another day.

This one is for the experts. It’s the official reply by the HSE to questions put to them by RTÉ journalist Aishling Kenny in preparation of the pieces she prepared for Morning Ireland, broadcast on 6 and 7 August 2016.

First the questions and replies. Then some comments.

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1. Is there a programme to help people with severe acquired brain injuries?

The National Rehabilitation Hospital (NRH) provides comprehensive inpatient and outpatient services toindividuals who, as a result of an accident, illness or injury, have acquired a physical or cognitive disability and who require specialist medical rehabilitation.

The Consultant led Brain Injury Programme at NRH is backed by experience and clinical expertise spanning over 50 years.  The Brain Injury Team works together with individuals and their families / carers to achieve the best possible outcome from the Rehabilitation Programme, which is tailored to meet each patient’s individual needs.

The Interdisciplinary Team within the Brain Injury Programme provides specialised rehabilitation treatment and care, designed to assist people with Acquired Brain Injury (ABI) to:

o   Adjust to their injury;

o   Achieve the safest possible level of physical independence;

o   Participate in family life, socially and in the community

o  Individuals admitted to the Brain Injury Programme at NRH typically have sustained a complex, acquired, non-progressive neurological disability following:

o   Traumatic brain injury, brain haemorrhage, stroke and other neurological condition

o   The service offers Interdisciplinary rehabilitation to individuals ranging from:

o   Individuals who remain in the near coma state or minimally conscious state  (disorders of consciousness), and locked-in syndrome

o   Individuals with major physical and cognitive disability

o   Individuals who sustain disabling initial head injury but recover the potential to return at least in part to their pre-injury role in society

2. Are you happy with that programme? 

The Acquired Brain Injury programme in the NRH is a specialist programme designed to met the needs of patients with moderate to severe acquired brain injury. In some cases patients with ABI have specific needs that can require them to have ongoing care at an acute hospital during their rehabiltation period, e.g. if they are for example ventilator dependant. However every effort is made to ensure that all patients who have been reviewed by the NRH team and deemed to be suitable for NRH ABI programme will have access to same. Headway operate day programmes for people with acquired brain injury which provide follow up care following discharge from NRH. Also, Acquired Brain Injury Ireland support a range of people with acquired brain injuries which increase the person’s independence in the community and provides specialisedsupport to people with Acquired brain injury residing in a number of community houses as well as transitional care in another location.

3. How long do patients with severe acquired brain injuries wait to get treated in the NRH? 

The table below indicates the breakdown of waiting times for patients currently awaiting admission to the NRH Brain Injury Programme. Waiting times are dependant on a number of factors and reflect the complexity of need of many of these patients. These factors can include other physical comorbidities that patients need treatment for, the complexity and the length of time that patients with ABI may require in NRH depending on the progress being made The HSE is  working   with stakeholders within the  draft framework of the Neuro- Rehab Implementation plan  to develop specialist community rehabiltation teams that can support care of these patients locally and enhance discharge pathways from the NRH.

SPEC	WAITING TIME
	0-3months	3-6 months	6-12 months	12-24 months	24-36 months
TBI	23	7	9	9	0
NTBI	13	7	10	2	0
STROKE	21	8	3	2	1
OTHER NEUROLOGICAL	2	1	0	0	0
OTHER NON NEURO	0	0	0	0	0
TOTALS:	59	23	22	13	1
Waiting List TOTAL:					118

4. How long does that treatment last when they eventually get in?

The target treatment time in the NRH Brain Injury Programme is 12 weeks, however each individual’s clinical needs can impact their length of stay depending on their requirements.This in turn impacts on waiting list for treatment, especially if patients become unwell during their rehab period and require acute hospitalisation.

5. How many beds are available to treat people with severe acquired brain injuries?

56 beds (out of a total of 108 Inpatient beds at the NRH) are designated to the Brain Injury Programme  including three beds for patients with the most complex clinical needs, for example patients who are minimally conscious.

6. Is there any homecare packages available for people with severe acquired brain injuries?

People with severe acquired brain injury present significant challenges for both the individuals and their families with many requiring lifelong high support care. The HSE’s Social Care Division, in partnership with the NRH and other agencies meeting the needs of people with acquired brain injury, are actively engaged in determining critical pathways of care and support that will best meet need their needs. It is also recognised that they frequently require highly specialist care across the acute, rehabiltation and community care setting. While every effort is made to ensure timely access to home care, the complex needs of people with acquired brain injury can require a different approach to standard homecare packages, if the appropriate standard of care and support is to be delivered in the community. Many such individuals are continuing to have their needs managed in the community on an ongoing basis; the provision of such care and support, in line with the ongoing development of the Neuro Rehab Strategy and Implementation Framework, is a priority area for further development (already highlighted in programme for Government) as highlighted above.

7. What are they and how many hours do they include? 

Where a package of care has been provided, the number of hours is dictated by the needs of the individual. The type of care provided might include;  personal assistants with training in complex disability care, high level of nursing care needs for immobile patients, provision of specialist equipment, the ongoing provision of rehabiltation in the community to prevent the onset of complications such as limb contractures. Many  individuals  for example require high levels of assistance with all personal care and feeding.

8. How much community based OT, physio and speech and language therapy is being provided to people with severe acquired brain injuries? 

Information in relation to type of disability is not currently collected, however, it is reasonable to project that  a significant number of individuals with acquired brain injury form part of the caseload of most clinicians relates to neurological conditions including acquired brain injury.

Ends.

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The answers provided by the HSE are frightening because not only do they highlight the extend to which the (top level of the) HSE is out of touch with our daily reality and that of the people working on the frontline, but also to which extend they are ignorant of their own assessments – apart from the fact that these generalised answers do not reflect the very specific questions focusing on persons with *severe* acquired brain injury.

The following is from a Draft Model of Care document available on the HSE website:

and authored jointly by the HSE and the Royal College of Physicians in Ireland. It’s just an extract, there are many more details on “gaps” and “unmet requirements”.

There are “profound resource and delivery gaps in rehabilitation services when compared with those in other European countries”. There is an “overwhelming unmet requirement for specialist rehabilitation services particularly for people who have sustained major central nervous system injuries”. “Many community residential options for younger, severely disabled people do not meet their unique needs where continuing slow functional recovery is possible over many years after their injury.”

It makes me physically sick reading these outrageous answers and I had to stop reading them out because I didn’t want to upset those around me, including Pádraig who is with us here in Germany getting therapy – because there is virtually no physiotherapy available for Pádraig in the community. And no OT. While we are not complaining, and Pádraig has no medical issues, he had no visits by the district nurse for months. Since his discharge from the NRH he had one outpatient physio/OT appointment there that did not include any treatment, just a form-filling exercise.

All families are fundraising to cover expenses that should be covered by the HSE and the State. Because these services are not provided or not provided adequately, many young persons have bed sores, dropped feet and contracted limbs – which are all more the norm than the exception – because of a lack of adequate care.

I wonder what Derek Greene, CEO of the NRH, would say to this? Or Simon Harris, Billy Kelleher, Louise O’Reilly, Roisin Shortall, and Finian McGrath.

An Saol will be meeting with the Minister of Health, Simon Harris, on 19 September and with Fianna Fail’s spokesperson for Health, Billy Kelleher. We have met with Finian McGrath TD, Minister of State with special responsibility for Disabilities, who has expressed his support for the An Saol Pilot Project. – Acquired Brain Injury Ireland and Headway, as well as Dr Delargy, clinical lead of the NRH, have all expressed their support for the An Saol Pilot Project — precisely because so far no one has been providing the neuro rehab to sABI survivors that they need.

I am still shocked by the outrageously generalised and imprecise way the HSE answers such serious questions about those whose lives have been changed forever by a severe acquired brain injury – including that of Pádraig.

16 Steps – sounds doable. Even with a severe acquired Brain Injury.

Actually, it didn’t to me when Pádraig’s physio announced that Pádraig was going to go up the stairs today. No ‘special’ stairs. No ‘physio’ or fake stairs. Real stairs. The one we are going up and down several times a day to go to the Bistro or to attend a therapy session. I’m no physio myself, but I’d say there are few physios around who would have dared to do this.

But we did. Pádraig did walk up the stairs. With help. But he did. And he made a huge effort to lift up his legs. It looks ‘difficult’ but it turned out to be much, much easier than any of us had imagined because Pádraig did so much of this himself.

 

To be honest, I thought I was dreaming.

Now – what’ll be next? 

 

Following the extensive news coverage over the past week or so, no one will be able to say that they hadn’t heard of the scandal that is the way Ireland treats her children who survived a severe acquired brain injury. – Change is on the way and at least one Minister has publicly stated that he supports the An Saol Project.

Here is an extract.

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Interview on John Savage Show on 06 September 2016.

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Cormac interviews Pat (as Gailge) on Raidio na Gaeltachta’s Cormac ag a Cúig on 06 Sep 2016

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Morning Ireland #1 on NeuroRehab and Shane Grogan on 06 Sep 2016.

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Morning Ireland #2 on NeuroRehab and Pádraig Schaler on 07 Sep 2016.

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Ireland’s Minister for Disability Finian McGrath TD Supporting An Saol on RTÉ One Morning Ireland (07 Sep 16)

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Miriam O’Callaghan reports on RTÉ’s Primetime (06 Sep 2016) on Neurological Rehabilitation in Ireland (or rather the lack of it), visits Shane Grogan and his family, and talks to Dr Delargy of the National Rehabilitation Hospital.

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Thank you to all the journalists and families who contributed to making the hidden scandal of the abandonment of survivors of severe acquired brain injury (sABI) public.

In parallel with all this other stuff going on and an extremely busy day packed with therapies, we have been working with Pádraig using his new amazing tech gear. Pádraig’s therapist had given us some exercises to do, really a therapy plan for the four weeks. Pádraig flew through the week 1 tasks: selecting areas of communication and then selecting the pre-set communication segment he wanted to use.

So he did some ‘fun’ things, using the device – watching back on some of the coverage yesterday and listening to one of his most favourite groups, Bell X1.

 

He couldn’t believe what was going on! It was just pure magic simply watching his joy and amazement at the tech he was using.

 

 

Never has this message be broadcast to the nation about severe acquired brain injury: the families are abandoned, the injured neglected. It’s time for change.

We really would need our heads examined if we allowed the current situation to continue.

This week, the private suffering and misery was converted into a public outrage. Today alone on TodayFM, Newstalk, Raidio na Gaeltachta, Primetime, the Irish Independent and other media outlets, the message was sent to the politicians: Basta. No more.

With a bit of luck, there will be more coverage tomorrow on Morning Ireland.

We’re just warming up:)

Pádraig went to a park today and two young boys started to talk to him and to us – a Syrian and a Lebanese. They wanted to know what “that” was in his neck. Pat explained to them that it was from a tracheostomy and why he had had one. They felt sorry for Pádraig when they heard about the accident, and the Syrian boy asked whether Pádraig had died? – Even Pádraig had to smile at the innocence of that question!

Today demonstrated how news stories can change really fast depending on what is seen as important. The report on Shane Grogan and his journey and that of his family was scheduled for Morning Ireland today, and confirmed last night. And changed later in the night. I’d say for bad Apples. There is a plan to have the report on tomorrow morning, but who knows. We’ll see tomorrow, or rather: hear.

>>> NEWS JUST IN: UNLESS SOMETHING BIG HAPPENS, THE FIRST OF TWO REPORTS WILL BE ON MORNING IRELAND BETWEEN 8:00 AND 8:30 TOMORROW MORNING AND ALL MORNING NEWS BULLETINS WILL CARRY A SHORTER NEWS REPORT! <<<

Pádraig is doing well with his therapy. The plan for tomorrow is to climb stairs. When I heard that, I was wondering whether this was something real or more an expression of ambition. In the end, I decided to look at it like I’m looking at the Morning Ireland situation. It’ll all be revealed. Tomorrow.

Today, I got a bit of competition. Chris (remember, Chris is one of those three auld folks attempting to cycle from Hollywood to Napa next month) started what he calls a ‘blog’, and Facebook calls ‘Notes’. Have a look at it!

Listen to RTÉ Morning Ireland tomorrow morning between 8:30 and 9:00 with a report on the severe acquired brain injury suffered by Shane Grogan four years ago as the result of a vicious assault in Tuam, Co. Galway – his journey to various hospitals, the need to go abroad for neuro rehab, his care in a nursing home and the wish of his parents to bring him home.

There will be a second programme around the same time tomorrow on Morning Ireland about Pádraig.

Germany is full of surprises. As you would expect, it’s not necessarily a “fun”-kind of surprises. This is not a “fun” country. Its more a solid, established, a ‘we-all-know-how-this-is-done-and-we-won’t-do-it-any-other-way’ place. Everything has its place. And that includes the seasons. These days it’s all about Herbst: autumn recipes, autumn drinks, autumn decorations, autumn colours for your wallpaper,

Could you imagine Irish people asking whether you are already in autumn mood, suggesting a few decorations for your home? What’s next? Christmas?

Pforzheim today brought memories of home. This morning, Carol Moran sent greetings to Pádraig and myself at around 7:45 which was really nice! This afternoon it started to rain all of a sudden, after a week of temperatures in the low 30s.

It stopped me from going out ‘training’ for the Great American Cycle #2 on my new bike that I bought yesterday, on what the Germans call “Verhandlungsbasis”, like the asking price. The person selling it via a bike shop was looking for a massive 60 euro but came down to 50, which left me 10 euro for a pump and a spare tube. It’s a German made bike, it has a brilliant Shimano set, and look at these tyres: just perfect!

You think, I thought – they must have sense. The Germans. The must have thought about this.

But they obviously didn’t. Who in their right mind would even think about selling, never mind buying, never mind giving as a present a “Romantisches Bastelsortiment”? (I don’t think there is a word in the English language that would appropriately translate “Bastelsortiment”:)

We went down to the Oechsle – Fest for the second consecutive day – and I still cannot grasp the germanic side of it all. It’s awesomely awful!

 

The weekend is almost over – long live the weekend!!!