It’s such an Irish-ism but honestly, If my pup gets sick or hurt, I can choose to take her to any number of vets for prompt and reliable care. Think your dog can take their human to any hospital to get reliable treatment and care if they happen to get sick or hurt? Hell no!
I am sick of the HSE (Health Service Executive, for my non Irish readers) I am sick of their wasting of money, wasting of patients time, Their complete lack of communication within its departments and a complete lack of overall proper treatment for the, mostly public patients of Ireland. Private patients have their fair share of stories to tell too, I am sure, but as I am going through the public system, I will speak only from my own experiences.
This morning a letter arrived in the post. I opened it, only to find 2 shiny new medical cards, one for himself, one for me, valid for how long? …2 months!
WE ALREADY HAVE CARDS which are valid until Jan 2014! why are they printing and sending these out to us? I know this may be trivial but that is an utter waste of money, printing the cards, and sending them to people who have no need of new ones because we already have them! Especially when there are people out there who also deserve them and cant get them or those who have them, need them and are having them removed for no apparent reason!
You can read such stories, all published within the last few months, here;
Mum ‘incensed’ as medical card taken off Down Syndrome child
Hospital vigil held in protest at removal of medical cards
Chronically ill girl has medical card taken from her
it is maddening!
The day before yesterday, The hubby recieved a letter from the HSE stating that he had been on a Vascular waiting list for so long at this stage that they wanted to know if he still wanted an appointment. He was never and has no need of ever being put on a vascular waiting list, what is this?!
About 2 months ago I recieved the same, stating that I had been on a Urology waiting list, again, I hadnt been, so why are these being sent out when people are waiting for genuine appointments and they are sending letters for phantom appointments that were never made?!
These are only tiny things. From my own experience, and from what I hear from others in the same situation, The HSE has broken down as a whole!
Yes there are success stories within the system, but it’s the minority that rarely get heard and treatment in this country for certain conditions, including most aspects of Dysautonomia, are simply non existant.
For example when I was in hospital, more than once, have I come up against a ‘so called’ specialist or Rheumatologist that said, “You dont have EDS, you have Hypermobility syndrome”
…?
I have said it before and I will say it again, that is like saying, “I am sorry, you dont have cancer, but, I am afraid you have… Cancer!”
IT’S THE SAME THING, MORON, with just a few risky extras, which I just happen to have! do some up to date research and stop living in the past!
In my opinion, and I doubt that I am far wrong, the only reason they argue or say this is simply, that if they admit to a condition, within the public service, which was diagnosed originally by a private specialist, then they, by law, have to provide public service care for that condition under the health system. There is no proper treatment available here for EDS, so you know, go figure…!
There are no specialists in Ireland who are qualified to deal with EDS or Dysautonomia. As patients we are palmed off on the cardiologist/geriatricians for Postural Orthostatic Tachycardia Syndrome because they cover some aspects of the condition, but certainly not all.
You are given over to the Rheumatologist/musculoskeletal specialists for EDS, because again, they know so much but not all about the condition.
By right, we should have a team of different specialists to cover our broad condition which would include: Rheumatologists, Neurologists, Cardiologists, Vascular specialists, Physiotherapists, occupational therapists, Pain management, Gastroenterologists and nutritionists, just to name but a small few, to cover every aspect of the condition intensively so that it can be properly managed.
That just does not happen here in Ireland.
If you require treatment like this, you have to pursue every medical angle separately, either privately yourself or through the HSE publicly, which takes years and there is very little, if any, communication within these departments, so that, files, information, xrays, appointments, you name it, either go missing or are never passed on to where they need to go.
It is frustrating, upsetting and makes our healing process go backwards, because, we get diagnosed, then do not get the immediate follow up treatment we need to progress in the right direction, instead you get ‘looked after’ over a very long period of time making your condition get worse while you wait!
The nearest Autonomic specialist is in London, his name is Dr. Rodney Grahame and he is known world wide for his contributions to research and development in this area. He is currently training a specialist to come over to Ireland to provide proper treatment over here, but it could take up to two years or more for that to be ready.
Getting to london without your own money for an appointment is impossible though unless some sort of fundraising is done. Either that or you can apply to the HSE Travel Abroad Scheme, which the majority of people get refused even though you may be perfectly entitled to it.
One irish patient with EDS, Jamie O’Brien had approval for his Travel Abroad application, went about making all of the necessary arrangements and just 3 days prior to leaving to go to England, the HSE retracted the approval. Meaning he couldn’t get the treatment he needed. You can read Jamies story here.
This has happened so many times, here is Aimee Foley’s Story and Sarah’s story Here. There are many, many more.
This has to stop. The time wasting, the money wasting, the lack of care, compassion or proper treatment. The lack of education of certain conditions within the HSE, the lack of communication or any organisation.
The health system is a disgrace and it’s time to fight.
Thankfully, there are a few very strong people within this little community of ours who are willing to make a difference and to fight for change. The EDS Awareness Ireland group have a few admin and members who have already spoken to those in The Irish Patience Association, Meeting up and pushing the issue with their own local TD’s, Writing letters direct to the current health minister and direct to media. There have been quite a few interviews on Irish TV and stories in the papers. Medical cards and a Rare Disease plan are now being considered for those with EDS, where it wasnt before. Changes are slowly but surely beginning to happen but still a little too slow.
We will keep pushing and fighting, it is all we can do for now! 🙂
Irish Dysautonomia Awareness 