Please read this article and await my wrath:
I cannot believe this.
No. It's truer to say I wish I didn't know this.
Of all the fucking irresponsible behaviours of the HSE. In the past, they have displayed gross incompetence, but this? This is just carelessness, this says they just can't be bothered.
Making an effort to procure organs should be a requirement of their work. When somebody collides with their fate in tragic circumstances and is brought to hospital; once the medics have fought like hell to save their lives, once death is declared, for those doctors and nurses the next thought should be contacting a transplant coordinator.
Somebody needs to have that conversation with a bereaved family, to find them in their darkest hour, and in the most gentle and hushed tones try to show them this little light that is embodied in me and hundreds like me.
To explain to them that there are hundreds of people waiting for a special call, and that through this devastating upheaval in their family, they today find themselves with the power to save a number of lives.
I maintain enough faith in humanity to believe that the reaction from a good percentage of those bereaved would be positive, that they would see an opportunity to salvage some good from this tragedy.
The figures makes me feel stupid. Here we all are, going around trying to encourage people to carry organ donor cards. Ha. Why should we bother? It's a waste of an effort, a waste of precious energy that I don't have in good supply.
Evidently there is no interest in the hospitals in helping us out. We can create all the awareness in the world, but we can't start chasing ambulances.
It sickens me to think of all the organs that have gone. Think of it like this, reader - think if you were stranded in a desert and all the water bottles had been buried on you. Think if you were in desperate need of food and all around you they were setting fire to hamburgers.
If I feel a desperation over it, how must the others feel? Those who are waiting for hearts or lungs or livers, who have an end date that beckons to them, without a treatment like dialysis to sustain their sick bodies. For them, this recklessness is the worst kind of betrayal.
Are our lives worth so little? I am 28 years old. I am educated and I want to be something, to contribute something, but my society has evidently decided I am not worth the bother.
When I was listed for transplant in August 2009, they told me I would probably wait two years for a kidney. Suddenly that seems so optimistic.
Fuck this.
Yesterday I emailed all the Health spokespersons of the major parties to ask them to commit to putting a Transplant Coordinator in every hospital.
ReplyDeleteI can post the email and addresses here if you like.
So far I got one generic reply for James Reilly of Fine Gael and nothing from anybody else.
The link to that article was in my email, btw.
ReplyDeleteEoin - Please do post the email here. I have felt too dismayed to do anything, but I hope to shame them in the media in my own time. It's the only language they understand.
ReplyDeleteDeputy/Cllr/Senator whatever,
ReplyDeleteAs the your party's spokesperson for heath, you have a strong voice on this issue.
I am asking all parties to make it a priority to introduce dedicated transplant coordinators in every hospital in Ireland in order to
promote health, save lives and save money.
It is estimated that dialysis costs €100,000 per patient per year. The majority of these patients can be taken off dialysis the second they get a transplant. The problem is that transplantation rates are falling.
I believe the solution is to put a dedicated trained counsellor in every A&E and/or every hospital who will speak to the families of the recently brain-stem-dead to encourage them to donate. This is not an easy job. Previous ministers for health though that overworked doctors could do this job while performing other duties. This was wrong. The coordinator in each hospital needs to be dedicated to the task.
For less than €100,000 per annum per hospital we could get a dozen or so patients off the machine and living a normal life. Like I am. I have been fortunate enough to have had a kidney transplant. Others are not so lucky.
Please make this a priority,
Le meas,
Eoin Madden.
Also, have a read of this:
ReplyDeletehttp://www.irishtimes.com/newspaper/ireland/2011/0131/1224288605263.html
and this http://www.irishtimes.com/newspaper/ireland/2011/0131/1224288605244.html
Regina,
ReplyDeleteI'm sure you could phrase the above message much better than I did!
Fianna Fail : Barry Andrews TD -bandrews@oireachtas.ie
ReplyDeleteFine Gael : Dr. James Reilly TD -drjamesreilly@gmail.com
Labour : Jan O'Sullvan TD -jan.osullivan@oireachtas.ie
Sinn Fein : Caoimghín O Caoláin TD - caoimhghin.ocaolain@oireachtas.ie
Green Party : Senator Niall Ó Brolchain - niallob@esatclear.ie
Great email Eoin - concise and logical. At the moment, money is probably the only thing they understand, so putting it in those terms is the best approach to take. I'll get on my own campaign now. Best to get them before they enter government.
ReplyDeleteThis is staggering - I'd read something about it yesterday but was in a rush. It's typical of the short termism and blind haste with which these situations are handled.
ReplyDeleteI've seen a lot of outrage, not only from yourself, today so hopefully this can ignite the situation with a view to fixing it.
I have been well and truly left staggering from it anyway, Radge.
ReplyDeleteStaggering and reeling and dialysing.
It's not carelessness on the HSE's part, it's actually gross negligence, no doubt about it. You're damn right to be fucking angry. It's an unfunny joke.
ReplyDeleteA common occurrence with them ... look at them okaying the contaminated dialysis fluids from the factory in Castlebar. I realise there's a shortage in Ireland, but for God's sake, if it was baby food, it'd have been taken off the shelves and destroyed immediately. And I think that is a fair comparison to make. Society hasn't decided that, it was a negligent health minister who refused to take on the HSE, an institutionalised zombie that like the Borg, subsumed its employees into its poisonous being. And ignored hundreds of patients each week on trolleys. And failed cancer patients. Harney ignored funding issues since the day she took over from Cowen. And passed the buck for years.
Negligence is endemic in our health service. It's beyond carelessness.
The public should also be campaigning for an opt-out policy by the new Government in terms of organ donation rather than opt-in.
For what it's worth, it is an issue on my list of questions for GE candidates. I hope it will be for others too.
My thoughts are with you and the hundreds of others in your situation.
Our (thankfully) outgoing Government should hang their heads in shame. They won't though.
F.K.
F.K. - That's the kind of anger we need. Maybe healthy folk like you can lead the charge. The reason successive governments neglect the sick is because few of us have the strength to fight back - as with all bullies, they prey upon the weak.
ReplyDeleteThe situation in Castlebar is horrendous - though it affects me (as in it is the Extraneal fluid that I carry around in my tummy during the day that could potentially be contaminated), nobody gave me any warning until a nurse mentioned it in a 'by the way' fashion two weeks ago.
Regina, I'm just so disgusted that I hardly have words!
ReplyDeleteIreland seems to be completely run by the criminally incompetent. I've worked in the health system in Germany for over twenty years and, heaven knows, I give out about it frequently - usually with reason - but this beats anything.
Opt-out is the only solution that makes any sense anywhere - though unfortunately we don't have it here either.
Nobody better than yourself to start a campaign, you have a way with words and you are a 'face' of organ donation. Maintain a certain degree of anger ... it helps focus the mind.
ReplyDeleteYou've already done a write-up with the Times and done radio, surely they'd be willing to give you a sounding again on such an important issue.
Your post speaks volumes, it's words like those that will strike a chord with people.
F.K.
Holy Lord, best of luck Reg. Sorry for all your troubles, I had no idea. Best, Bill.
ReplyDeleteFrancis - I was kinda just numbed by the story when I read it first, then I just got angry. I also feel foolish. Here I have been going to bed every night, thinking I might get the call before morning, only to now know that transplants just haven't been happening.
ReplyDeleteF.K. - I'm working on it. Going on Tubridy again for a rant next week. Will see if I have the time to write something for The Times too. I'm just concerned at doing stuff now and having it fall through the crack that exists when you have a country that is between two governments.
Bill - Thanks for your good wishes. I'm keeping well, despite it all. A transplant is just really necessary for my sanity.
Wow. Fair play to ya. Make sure to make a new post here well in advance when you’re going on Tubridy, so myself and other Limbo-ers get the update alert and can hopefully make a coordinated effort to send in supportive and angry texts (although he defo seems to swing in favour of reading out tweets).
ReplyDeleteI hear what you’re saying about falling through the cracks. However, if you could get a commitment from FG and Lab BEFORE they form a Government that they will address the issue of transplant coordinators and opt-outs, I think that would be a major step forward. Maybe even get it in their Programme for Government. Maybe they'd even welcome a breather from questions about the banks/economy/IMF/unemployment/mortgages!
And if they say an opt-out system may breach human rights, well, let them state a case to the European Court of Human Rights and anyway, Labour want to re-write the Constitution. Anyway, one could argue that you and countless others are already being denied a basic human right to proper healthcare in a developed country with high taxation.
I shall send Tubridy an email over the weekend, maybe Eoin (above) and some others can too? There certainly seems to be anger out there. But more is needed.
The contact details for Tubridy are:
Texts: 51551
Email: tts@rte.ie and tubs@rte.ie
Twitter: @TubridyTweets
Phone: 1850 715 105
PS I'm loathe to suggest him, but have you considered contacting Joe Duffy?
F.K.
Fuck - what a disgusting mess! How could I have missed this, I check the Irish Times daily as part of my round up of World news and I obviously have an interest in all things transplant and kidneys, but this is just mind-blowing.
ReplyDeleteOur kidney transplant surgeon here in Saskatchewan was ill for a bit in July/August 09 and the Health minister used that as an excuse to shut down the transplant program for 11 months. He only agreed to start it up again after being shamed by a dialysis patient doing her exchanges in the main foyer of the legislature. Her transplant had been pushed way back even though she had a willing live donor lined up.
I am just totally pissed off that the highly paid bureaucrats who are supposed to deliver proper health care cannot be bothered to do their jobs. I was going to say I couldn't believe it, but after my years on this earth I can believe it only all too well.
Fight them,get the parties to commit to doing the right thing, and to clear out those who cannot be bothered to do their jobs. In this economic climate, there are plenty of active, intelligent, willing people to do the jobs that the current lot do not care to do. If they are not fit for purpose, get someone who is and hold them accountable.
This is our lives they are messing with here. As Regina pointed out, kidney patients have dialysis (however unsatisfactory and draining it may be) to bridge us over. Lung, heart and liver patients just can't wait, they have a final termination date.
Kidney patients wasting away our lives in limbo, with limited energy and our bodies accumulating damage from inadequate kidney clearance are in a slower version of this death if we do not receive transplants.
J Harper
Regina, Saskatchewan
What's this about distributing contaminated extraneal solution? I had not seen anything on that! How could that possibly be justified. PD centres constantly preach on the necessity of eliminating any possible source of infection and then they put out infected solution? Can you direct me to where this was mentioned please. Also I replied to your email.
ReplyDeleteJ Harper
Regina, Sask.
I got one reply to my email so far:
ReplyDelete--
Eoin a chara,
Thank you for bringing to my attention the need for transplant co-ordinators in our healthcare system. In reading the material to which you referred I was struck by the fact that the drop in donor numbers is yet another symptom of the pressure being put on front-line healthcare staff as a result of Government cutbacks. It is also clearly a result of the failure to put in place a properly co-ordinated donor system. Your representation is timely and this is certainly something I will raise in the new Dáil (trusting that the people of Cavan & Monaghan re-elect me!)
Please keep in touch and feel free to forward any further relevant information.
Is mise
Caoimhghín Ó Caoláin.
Sinn Féin spokesperson on Health & Children.
Caught the end of the radio piece on way to work, must download it later. Seems to have gotten a great reaction which is what you need. Fantastic job, well done. Hopefully you can make a change.
ReplyDeleteF.K. - I ended up being on Tubridy yesterday, with no notice, so I couldn't give anybody advance warning. Thanks for posting all of those contact details there - very efficient and helpful of you! The interview went well. I will put up the link in a little while. Oh, and I've heard rumour that the IKA are hoping to get Joe Duffy on board as one of their sponsors for the coming Donor Awareness Week.
ReplyDeleteJohn - I sent you an email
Eoin - I'm not a fan of the Sinn Fein people, but fair play to him for replying - or for at least getting one of his staff members to reply. There are plans afoot for a major push when a new Health Minister comes in. We will have to pester him until he gives in and grants us a National Transplant Body.
Anonymous - The reaction was massive alright, and they had a heart transplant recipient-in-waiting on this morning, just to maintain the momentum. Thanks for posting.
Regina, I had typed a comment or two but somehow I deleted the entire message by selecting one word!
ReplyDeleteBut I fear this is as a result of the ideology of privatising our health service. Certain persons in Ireland want to make our ills their bread and butter. An apartheid 'American' style of healthcare must be opposed at every opportunity.
There are currently plans to give health insurance companies the control of care plans instead of consultants. So some accountant who listens to Michael Bolton CDs will decide how much access you get to top level care.
Holemaster - I know a lot of people are edging towards that theory - that not finding a cure for kidney disease ensures massive wealth for our consultants. I can't think like that. I already feel like enough of a pawn in someone else's game.
ReplyDeleteDear Eoin,
ReplyDeleteThank you for your email and your link to the interesting Irish Times articles. The Labour Party has included a commitment to implementing the recommendations of the Madden Report for an 'opt out' scheme so as to improve the availability of organs for people in need of a transplant (I have attached a link to the Manifesto below).
Your proposal to for Transplant Coordinators has much merit and, if Labour are in Government, I will ensure that the proposal is given serious consideration as part of any policy we are introducing to improve the availability of transplant organs.
http://www.labour.ie/download/pdf/labour_election_manifesto_2011.pdf
Best wishes,
Jan O Sullivan
Eoin - Nice letter from Jan. If we could get a response from a party that will actually be in government now, it'd be great!
ReplyDeleteA lot of them are into the opt-out idea. Our Kidney Association say it doesn't make any great difference to the number of deceased donors. Having donor coordinators in each hospital and allowing for organs to be harvested from those who have suffered cardiac deaths would be much more effective in terms of increasing transplant numbers.
Good work you're doing anyway. And good timing. They'd be willing to do anything for you in these pre-election times ;)
Finally I get a response from the Greens. They must have been waiting for the moratorium to kick in! :p
ReplyDeleteDear Eoin,
It is troubling and sad to hear of the decline in organ donation recently,
leaving more people on dialysis for longer. I know that it is not ideal for
patients to be on dialysis for extended years and that they can gradually
become weaker. We need to concentrate on getting people transplanted
quicker. There are many ways this can be achieved. My preference and
perhaps the most effective would be to place coordinators in major
hospitals as you have suggested. These coordinators would have to be
trained to deal with the emotional situations they would be in, but it
must be possible.
I am supportive of the IKA and, as you know, last year I sold
Forget-me-Nots on Shop Street in Galway. Thanks again for raising this
issue.
Best Regards,
Senator Niall O Brolchain
--
Now in the spirit of openness and transparency, I must admit to having leafleted for Niall this week and having given him a hard time for not replying sooner.
But as you hint Regina, it would be nice to have a reply from Fine Gael, given that it is almost certain they will be the largest party (if not the only party) in the next government.
Eoin - We need to talk, my friend. You're a Green? This changes everything! ;)
ReplyDeleteNice reply from Niall, though I did laugh out loud at the "as you know, I sold forget-me-nots on Shop Street" bit. He should not take this personally. I have a twisted sense of humour.
Seeing as the next Taoiseach is going to be from my own county, myself and Brendan can camp on his lawn if needs be in the coming months. I know where he lives.
Good on you :)
ReplyDeleteAnyway, the new Programme for Government agreed this evening between Fine Gael and Labour contains the following:
ReplyDelete"We will legislate to change the organ donation to an opt-out system for organ
transplantation, rather than an opt in system so as to improve the availability of organs for
patients in desperate need."
Personally, I see this as pointless without dedicated transplant procurement coordinators in the major hospitals.
Eoin - It is entirely pointless. It's like trying to put out a fire in a house by hosing down the adjacent garage.
ReplyDeleteOpt-out may increase the number of potential donors, but we still won't have the Donor Coordinators to do the talking, we won't have sufficient number of operating rooms and staff to harvest organs, or the sufficient number of beds on wards for patients.
They just don't get it.