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Jun
23

10 Years of Empty Promises as Successive Governments Fail to Invest in Rehabilitation Services

Mansion House, Dublin: Organisations representing people with neurological organisations are calling on the new Government to tackle the critical lack of rehabilitation services in Ireland.
The Neurological Alliance of Ireland (NAI), the national umbrella for neurological not for profit organisations, has teamed up with fifteen of its member groups representing conditions such as stroke, acquired brain injury, multiple sclerosis, Parkinson’s and Huntington’s disease to launch a nationwide campaign entitled “We Need Our Heads Examined”. The campaign is calling on the government to take action and prioritise the urgent need for neuro-rehabilitation services, for the 25,000 people each year who need them.
Speaking at the launch of the campaign was Professor Mark Delargy, Clinical Director at the National Rehabilitation Hospital, he said “Rehabilitation services in Ireland are completely underdeveloped, not everyone who needs to can access vital specialist rehabilitation in a hospital setting, and when they are discharged they often receive little or no additional supports in the community. For many there is no other option than to be inappropriately placed in a nursing home with little chance of gaining any independence”.
Ten years of empty promises have seen no investment in services, despite the publication of a National Neuro-rehabilitation Strategy in 2011. Since then nothing had been done and no progression made.
Reinhard Schaler, a father whose son Padraig suffered an acquired brain injury (ABI) in a road traffic accident, and was forced to travel to Germany for treatment said, “We are condemning people with acquired brain injuries to a future of neglect, disability and lost opportunity. We cannot continue to deny access to vital services and we can no longer be expected to travel overseas to avail of them. The intervention period is crucial for a neurological condition, yet due to the lack of neuro-rehabilitation services in Ireland this ‘intervention period’ is a loss for many”.
Also speaking at the launch was Alexis Donnelly, a person living with MS for over twenty-five years who has known a lifetime of inadequate services. He said “Ten years of inaction has brought about extraordinary despair for so many of us. People living with a neurological condition cannot just be left to deteriorate and told the health system won’t provide for them. We need access to a range of quality services and supports to enhance our quality of life and well-being. This is not just bad healthcare it is bad economics”.
The NAI and its member organisations are calling on the government to overcome a decade of broken promises and honour their commitment to publish an implementation plan for the National Neuro-rehabilitation Strategy; dedicate investment to the development of new services from hospital to home, for those living with a neurological condition.
The campaign ‘We Need Our Heads Examined’ launched in the Mansion house today. For more information or to support this campaign see www.nai.ie or tweet #Rehab4Ireland @nai_ireland

Campaign Member groups
Acquired Brain Injury Ireland www.abiireland.ie

Ataxia Ireland www.www.ataxia.ie

Chronic Pain Ireland www.chronicpain.ie

Multiple Sclerosis Society of Ireland www.ms-society.ie

Headway www.headway.ie

The Rehab Group www.rehab.ie

Parkinson’s Association of Ireland www.parkinsons.ie

The Alzheimer Society of Ireland www.alzheimer.ie

Irish Heart Foundation www.irishheart.ie

PSPA Ireland www.pspaireland.ie

Huntington’s Disease Association of Ireland www.huntingtons.ie

Brain Tumour Ireland www.braintumourireland.com

Enable Ireland www.enableireland.ie

Spina Bifida Hydrocephalus Ireland www.sbhi.ie

Muscular Dystrophy Ireland www.mdi.ie

Jun
22

My name is Colm Griffin; I am from Ballyheigue, Co. Kerry. I am an Electrical Design Engineer and work in an SME. I am 35 years of age. I’ve played GAA since I was 8 and took up cycling in 2009 as an alternative as it was flexible and I could plan my cycling around work commitments.

My grandmother died aged 54 from a brain haemorrhage in 1960s.  My Dad (her son) had a surgical procedure in 1980 for his first brain haemorrhage and in 2008 had a second brain haemorrhage from which he died. In November 2014 my eldest brother had a brain haemorrhage which lead to a surgical procedure in Cork University Hospital. At the time of my brother’s surgical procedure the surgeon enquired had the rest of the siblings been scanned for any aneurysms after he learned the family history. He recommended we all be screened.  On this recommendation I was screened in the early part of last year.


From the scan it was found I had a 3mm aneurysm on the right side of my head. I had a consultation with the same surgeon that operated on my brother and after being given all the information and scenarios I decided to have an elective surgery to fix the aneurysm in my head.


 

Colm climbing mountains in the snow with his friends

Colm was very active before the surgery


Surgery and post surgery

I arrived on the 18th November 2015 in CUH and had the surgery. Then I had a blood clot during the surgical procedure which led to a stroke. The complete left side of my body was paralysed. I was operated on again immediately and the clot removed. The aftermath recovery was in an ICU ward for one week followed by four weeks with intensive rehabilitation in the neuro surgery ward in Cork University Hospital (CUH).

A family meeting was scheduled with the multi-disciplinary team in the hospital to agree a plan for my rehab but the only person to show up at the meeting was the physiotherapist. That morning while at my physio session I broke down emotionally, I was in tears as I felt like I was irrelevant to the parties that were to show at the meeting. I felt abandoned; no one gave a crap about me and my rehabilitation in the hospital. It was like; your aneurysm is fixed. Sure it’s time now to go home and sort yourself out to walk and use your left arm. I was so angry that day; I was raging inside. I walked in for a procedure to fix an aneurysm I had, in my engineering head a “Preventative Maintenance” procedure; fix it before it breaks so I’m not a burden on my family or society later in life if it breaks. So I arrived in hospital a 100% fit and healthy 35 year old man with full mobility and now the hospital system thinks I’m fixed yet I’m wobbling around with limp leg, foot and arm and hand that presently does not function at all.


How the HSE can’t see how rehab is as important, if not more important than medical procedure, baffles me! If I had to go again with this medical issue I had; I wouldn’t. Not because of the care or the surgical procedure but due to the limited rehab the hospital system allows. As it stands, I can’t cycle, I can’t drive, I can’t play sport I can’t work, I can’t lift my future children up into my arms!! I understand there is risk in the operation and I signed the waver to acknowledge this. I’m no way blaming the medical professionals that have been part of my medical and rehab team. They’re just tied by the overall management and the ‘system’.


The hydrotherapy pool which I attended in CUH brought my rehab along so much yet the therapists have to try and work with two at a time in a pool no bigger than 16ft x 8ft. The rehab gym in CUH did fabulous work also in bringing my recovery along in such a short amount of time, but from my view I can see that only 3 to 4 staff can work in the gym at a time. The existing CUH rehab services require so much more financial funding to let them carry out their fantastic work, have more time with patients, adequate facilities and staff. There must also be a rehab bed allocation to keep patients until they are able to progress to the next stage of their rehab.


Colm in hospitalColm in hospital, in wheelchar in front of Christmas treesColm in hospital, picture of scar on his head

Colm in hospital after the surgery


Leaving CUH

I was discharged on the 23rd of December.  I had no contact from any member of the HSE in relation to services in the community. I understood the basics but after this it’s being pure luck with word of mouth and my own research. In the meantime, the bills are mounting up. I can’t drive for 6 months as I had a seizure after the operation. My mother has to drive me to all my appointments. My mother is applying for carers allowance (she is a pensioner) and we only found about this service through again word of mouth, right place, right time to hear it. She may not get it. Enable Ireland in Tralee have hydrotherapy pool that I can use privately at €50 a session or €20 a group session but paying is challenging when you’re getting €188 per week….you can see the issue….


I’m really just frustrated at the health system or lack of when you’re discharged from hospital.  It’s non-existent, definitely in Munster and without a doubt in Kerry, end of story when it comes to intensive rehab for patients who are able for it to get them back to where they were before their problem occurred.


Getting into the NRH

I got a bed in the NRH on 3rd February 2016. I think I probably got it because I complained and shouted the loudest. I know everyone on my rehab team in the NRH has worked so hard  getting me to where I am now and for that I’m so grateful but at the same time can’t help feeling that I haven’t got the most out of my time there. I put together all my hours on the timetables for 9 weeks of my 10.5 weeks block of rehab in the hospital. (I threw away Week 1 & 2 timetables). I basically took all my contact hours on my timetables for therapy/sessions of any kind which I have done on my rehab block and compared them against total hours available on my timetables Over 9 weeks of rehab I’ve only been engaged with all my therapies 32% of the time and the other 68% of the time is free time, idle time I like to call it. This is calculated on the basis of 8.30am – 5pm day. It doesn’t include the evening hours from 5pm till 10pm in the hospital. For the national centre, the NRH is not properly resourced and there are many limitations to what they can offer there.  I shared my thoughts with the NRH and made a few recommendations to them too based on my experience.

I made real progress with my leg and hand but finishing in the NRH means I have to start all over again in Kerry General Hospital. I do realise the progress I have made; just look at the photos from where it all started. You work as hard as you can and you’ll have good days, bad days, lazy days, angry days, and deflated days with yourself about your progress. You go through every feeling with it.

Final comments

It will be argued, that’s it’s down to yourself to get better and that is correct 100%! If I could look at the recovery being like a mountain stage of the Tour De France; yes the person has to have the will, the drive, the focus, the believe in himself to reach the top but every now and then they fall off their bike and need a hand to get back on and a push to get moving!
I have written this as brutally honest as I can be. I hope this shows the people who do control the money decisions in the HSE that rehab is an essential part of treatment that services need to be developed and funded properly in order to provide the therapists that are needed. They are the cold face of rehabilitation and they are changing people’s lives every day!

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