Primal Sneeze

A close family member of mine has a long term illness. One that is incurable and, in his case, worsening. By now, and aged just 40, his bladder has failed, his speech is incoherent, he has movement in only one hand. He needs the 24 hour care afforded to babies – dressing, washing, changing, feeding. There’s more, but you get the picture.

As he suffering from one of a list of prescribed diseases or disabilities, to use the HSE term, he holds a long term illness book. This entitles him to the drugs, medicines and medical and surgical aids and appliances prescribed for that disease free of charge. Note the caveat there: prescribed for that disease

So what does that mean and how does it work? Well, his doctor enters the type and quantity of drugs he prescribes into the book. Then some official in the HSE checks that those drugs are on the list for that disease and rubber stamps it. Once approved, any pharmacy can dispense what’s needed. Great!

But sometimes they are not approved. Why? Well they will have been certified safe by the Medical Board but no official has gotten around to deciding they are suitable for his particular ailment. So what happens then? Well his wife, doctor, specialist, chemist, bin-man, soothsayer, everyone! fights to have them put on his book. In the meantime, they have to be paid for.

Now I hear someone reminding me about the community drugs scheme whereby no-one pays more than €85 in any calender month for approved prescribed medicines. Yes, but €85 is a lot when your disability or long term illness benefit is less than €200 a week, out of which you need to buy the regular stuff and pay the regular bills we all do. Then on top of that there are extra expenses like paying a carer for the additional hours worked above the 20 covered by the HSE.

Note that the description of what is covered by this book doesn’t mention things we would all assume like doctor visits. It doesn’t cover hospital fees. If he gets the flu he has to pay to see his doctor and for whatever antibiotics he prescribes. If he breaks an arm he must pay the A&E charges. The time his bladder failed and he needed surgery he got a hospital bill for €500.

Most of you won’t believe this. I know you won’t because no-one ever does. They think (and excuse the pun) I’m making some sick joke. How could someone so ill be treated like this?

So what’s the solution? A medical card. That covers doctors, hospitals and whatever medicines they, or other health workers, prescribe.

So why doesn’t he have one? Well he does … most years. Not all. It is reviewed every year based on income and every year, coupled with his wife’s, their combined income is over the limit by a few euro. And yes, they do count his state benefits in this calculation. Every year his application is refused and has to be appealed based on the expenses he would be expected to incur such as doctor and hospital visits and medicines not listed on his long term illness book.

Some years the appeal fails. Others it it successful. But each year the rigmarole is the same: Send in the application. Two weeks later expect a response. None comes. Make a phone call. Oh, yes, we have that here and are working on it. A week later phone again. No, I can’t seem to find that. Are you sure you sent it in? Insist you did. They find it. Two weeks later. Get the refusal notice. Send off the appeal. Wait two weeks. Make a call. No, I can’t seem to find that. Are you sure you sent it in? Insist you did. They find it. A week later. Make another call. Oh, yes, we have that here and are working on it right now. Wait a few days. Make yet another call. Well, we can’t proceed until you supply us with such-and-such document. Insist that it was sent. Well maybe we lost it. Ask how they could lose it when everything was stapled together. Maybe when it was being photocopied. Say there would have been no need to photocopy anything as you provided copies to save them doing it. Oh, look. Here it is on my desk. I will get to work on this immediately. Ask if you can call tomorrow for news. Oh, I don’t work Wednesdays or Thursdays. Call Friday. Call Friday and there’s something else. And so on and so on and so on.

While all this is going on, he has to pay the doctor, chemist and so on. This year is no different. That last I heard, the appeal is at the maybe we lost it stage. In the meantime, while all this was going on, and order for a speech aid (and some other items) that took 8 months to get approved, has been cancelled by some official in the HSE’s purchasing department. Why? Because the computer says he has no medical card. When If he gets the card back he can reapply. Another 8 months.

There are benefits and structures in place to assist him and others like him. There are doctors, nurses, chemists, therapists, wives, husbands, kids, carers, bin-men, soothsayers, you name it, all working long and hard to help him. Yet the whole thing collapses when some jumped up little official in a suit that doesn’t rhyme doesn’t know how to or can’t/won’t do the job they’re paid to do. These people are the real sickness the HSE needs to deal with. These are the cancer in the system.

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