Critical medication not available on medical card

kormak

Hi Folks,
Bit of a strange one which I'm hoping someone can shed some light on.
My daughter was born with a lifelong condition in which she'll require daily medication for the rest of her life.
We've spent months trying to get her a medical card in which we justwere recently successful after jumping through several needless hoops!

Before this we were getting her meds on the drugs payment scheme. There was no issue bar one had to be requested to be placed on the scheme though 'the hardship fund'. Essentially it didn't have a code for the pharmacy. There was a bit of too-ing and fro-ing with this, but we got it sorted.

We now have her card and were instructed to get all her meds re-prescribed by the GP as they would be coming under her medical card. Fine! I got all this done and landed into the pharmacy today.
To my complete disbelief the pharmacist advises me that
none of her medication are available to the medical card
I might add that these are critical medication in which she's required to take daily, similar to a diabetic.
Our pharmacist reckons that's the advice they've been give by the HSE and we or they would have to apply for all her medications through this hardship fund also. And if the HSE give the green light on this, they would have to be reviewed every six months!!
The pharmacist thinks if she can get the 'long term illness' card, then there would be no issues. Only our wee girl's illness doesn't actually appear on the HSE small list of "long term illnesses".
I'm still a bit gobsmacked by this whole thing. Since she was born it's been a real eye opener into the absolute massive mess of an organization our health service really is.
How can someone who's been granted a medical card be told that the medication they need (to stay alive) are not available on said medical card?
I might add that these medications cost approx €300 for the lot, they're not astronomical like some medications the HSE famously refused in the past.

I would appreciate any bit of a steer on this?
Is there a central pharmacy customer service I can contact or what are people's thoughts on this. Does it seem right?

PucaMama

unfortunatly this happens very unfair considering the situation. have you spoken to a community welfare officer? id try those first look on welfare.ie

harr

Hi
We are in kind of the same boat our little lad is on life long meds (heart condition ) 4 different kinds ...2 are covered by his medical card and the other two are not covered so we have to use the hardship scheme our paediatrician signs the form at every appointment (twice a year) and our pharmacist sends the form off for us...it has been questioned a few times by the HSE ...even asking us how long he will need the meds .even though.both the paediatrician and pharmacist state on the form that the meds will be life long..
It's a right pain because if there is a Delay or backlog we end up paying for the medication till the chemist gets the all clear to dispense his meds.
We have not come across away around this so far...

kormak

PucaMama wrote: »

unfortunatly this happens very unfair considering the situation. have you spoken to a community welfare officer? id try those first look on welfare.ie

I haven't yet but I will getting in touch today... thanks.

kormak

harr wrote: »

Hi
We are in kind of the same boat our little lad is on life long meds (heart condition ) 4 different kinds ...2 are covered by his medical card and the other two are not covered so we have to use the hardship scheme our paediatrician signs the form at every appointment (twice a year) and our pharmacist sends the form off for us...it has been questioned a few times by the HSE ...even asking us how long he will need the meds .even though.both the paediatrician and pharmacist state on the form that the meds will be life long..
It's a right pain because if there is a Delay or backlog we end up paying for the medication till the chemist gets the all clear to dispense his meds.
We have not come across away around this so far...

sorry to hear that.
what a complete ****hole of a country we live in! :mad:
I can't get my head around this at all.. what's the bloody point in owning a medical card?
what avenues have you approached on this so far?
Have you tried applying for a long term illness card?

harr

kormak wrote: »

sorry to hear that.
what a complete ****hole of a country we live in! :mad:
I can't get my head around this at all.. what's the bloody point in owning a medical card?
what avenues have you approached on this so far?
Have you tried applying for a long term illness card?

His condition is not on the long term illness list,we did apply but no luck ,we had a fight even to get his medical card ,he has special needs and as well as a heart condition he has a long list of medical needs,the medical card covers most of his meds thank good and the hardship scheme covers the rest but it's a pain having to send in a new Application when ever his meds change...dont get me started on the likes of occupational therapy ,speech or other services he needs ,every day I am on the phone trying to get what he needs ...this country would sicking you,so much red tape to go through for even The littlest things 😡

sullivlo

I take meds that are prescribed by the consultant but aren't covered by DPS / medical card. It's a nightmare. At least €70 a month, which isn't that much in the grand scheme of things, but an annoyance all the same. Life long illness also.

echo beach

kormak wrote: »

I would appreciate any bit of a steer on this?
Is there a central pharmacy customer service I can contact or what are people's thoughts on this. Does it seem right?

It doesn't seem right because it isn't right but it is the way things are in our dysfunctional system. It is a particular issue for medicines for children and those with unusual conditions. Only those affected know it is happening.

You could contact the PCRS, who are the section of the HSE who do the paying but I don't advise it. If you can find anybody who knows what you are asking about they will tell you what you have been told already only in a much more long-winded way designed to confuse.

If you have the energy, which most people in this situation don't after dealing with all that is on their plate, then contact politicians. They are the only people who have the power to make the simple changes needed to sort out this mess. It wouldn't even cost a lot of money. It might even save money in the long run.

kormak

I've spoken with a friend who's son has the exact same condition as our little girl. Both kids have medical cards and are on the exact same medication. Only difference is her boy is on a branded tablet form and our girl's meds are unbranded and in oral suspension form!!
Apart from that they're the exact same ingredients and guess what... she had no issue whatsoever with her pharmacy placing these medications on the kids card.
Thanks for your assistance and tips everyone... there's some more digging to do here!

harr

kormak wrote: »

I've spoken with a friend who's son has the exact same condition as our little girl. Both kids have medical cards and are on the exact same medication. Only difference is her boy is on a branded tablet form and our girl's meds are unbranded and in oral suspension form!!
Apart from that they're the exact same ingredients and guess what... she had no issue whatsoever with her pharmacy placing these medications on the kids card.
Thanks for your assistance and tips everyone... there's some more digging to do here!

That does ring a bell, I think we were told before because our lad takes all his meds in suspension form that this affects the costs involved...he was put on a new medicine only last week and it only comes in a capsule so no use to us as he will not take tablets for us...the oral suspension for this new medication is not available because of costs Involved so is not approved yet by the HSE but no problem getting it in capsule form...strange ...

echo beach

kormak wrote: »

. Both kids have medical cards and are on the exact same medication. Only difference is her boy is on a branded tablet form and our girl's meds are unbranded and in oral suspension form!!
Apart from that they're the exact same ingredients and guess what... she had no issue whatsoever with her pharmacy placing these medications on the kids card.

It might not seem much of a difference to you but in practice that is a HUGE difference. The tablet form has been licensed and is authorised by the HSE for supply on the medical card. It is almost certainly widely used by adults as well as children. The suspension has to be made specially to order, doesn't have a licence and is NOT authorised by the HSE. There may only be a few children in Ireland taking it.
If your child can take the tablet form this problem is over and your pharmacy will have no issue supplying them on the medical card. If not you are stuck in the same position.

ash23

Just FYI, I have a long term illness card but still have to have my meds prescribed and reviewed by a consultant every 6 months as they are on the high tech medical scheme. I'm only on one medication and one high dose vitamin which doesn't need a prescription so I'm not sure if all meds require a 6 month review even with the Long Term Illness card.

kormak

echo beach wrote: »

It might not seem much of a difference to you but in practice that is a HUGE difference. The tablet form has been licensed and is authorised by the HSE for supply on the medical card. It is almost certainly widely used by adults as well as children. The suspension has to be made specially to order, doesn't have a licence and is NOT authorised by the HSE. There may only be a few children in Ireland taking it.
If your child can take the tablet form this problem is over and your pharmacy will have no issue supplying them on the medical card. If not you are stuck in the same position.

Yeah, so I've found all this out today. My pharmacist could done with telling me this when I first went in!!
I understand that our oral solution is not licensed whereas the tablets are.
Therefore it needs to be requested through the hardship fund/ I've also been assured that this is just a formality and that the pharmacy should do all necessary reviewing on your behalf every 6 months. So she can get her meds through this method until she's old enough for taking them in tablet form.

byhookorbycrook

I have a consultant script for a medication that costs €280-€500 per month. Not covered under LTI or any other scheme.

palmcut

kormak wrote: »

Yeah, so I've found all this out today. My pharmacist could done with telling me this when I first went in!!
I understand that our oral solution is not licensed whereas the tablets are.
Therefore it needs to be requested through the hardship fund/ I've also been assured that this is just a formality and that the pharmacy should do all necessary reviewing on your behalf every 6 months. So she can get her meds through this method until she's old enough for taking them in tablet form.

From my experience getting items approved on the hardship scheme is not a formality at all. I've had several requests refused.
In our area the local office insists on a copy of a valid prescription to go with each monthly claim.

echo beach

ash23 wrote: »

I'm not sure if all meds require a 6 month review even with the Long Term Illness card.

A prescription is a legal document and is only valid for a maximum of six months.
The various schemes all have their own administrative rules, all so complex I doubt if anybody really understands them all, but despite what some people may tell you there is no (legal) way a prescription only medicine can be supplied more than six months after the date on the prescription.

freudiangirl

byhookorbycrook wrote: »

I have a consultant script for a medication that costs €280-€500 per month. Not covered under LTI or any other scheme.

What about drugs payment card?

locum-motion

freudiangirl wrote: »

What about drugs payment card?

ByHook has already answered that.

byhookorbycrook wrote: »

I have a consultant script for a medication that costs €280-€500 per month. Not covered under LTI or any other scheme.

freudiangirl

locum-motion wrote: »

ByHook has already answered that.

Sorry, was late when I replied. Dumb moment
I had to take.xarelto last year for a lung clot& chemist had to apply for special thing to get included in dps scheme. If I had to pay it would have been over 300 euro per month.. Might be worth looking into.
Feel free to tell where to go with my advice

palmcut

freudiangirl wrote: »

Sorry, was late when I replied. Dumb moment
I had to take.xarelto last year for a lung clot& chemist had to apply for special thing to get included in dps scheme. If I had to pay it would have been over 300 euro per month.. Might be worth looking into.
Feel free to tell where to go with my advice

Xarelto is an anti-coagulant. It is part of a group of drugs that the HSE calls NOACs. (New Oral Anti Coagulants). These NOACs are more expensive than Warfarin. (an older anti-coagulant) The HSE has a whole series of dispensing rules in relation to NOACs; one of which is that the HSE must issue special approval before a NOAC can be dispensed on any State scheme.

kormak

We'll just have to see how this "formality" works out. We all know how completely incompetent the HSE can be.
Our little girl was refused a long term illness card this morning as her illness is not on the HSE's list of "long term illnesses"
I was half expecting this anyway but it still irritates me as it is a long term illness. She will have this for the rest of her life!
Does anyone if there's an appear process involved here? I'd like to pursue this to the very limits if I can...

locum-motion

kormak wrote: »

We'll just have to see how this "formality" works out. We all know how completely incompetent the HSE can be.
Our little girl was refused a long term illness card this morning as her illness is not on the HSE's list of "long term illnesses"
I was half expecting this anyway but it still irritates me as it is a long term illness. She will have this for the rest of her life!
Does anyone if there's an appear process involved here? I'd like to pursue this to the very limits if I can...

As was previously pointed out, a long term illness is not necessarily a Long Term Illness!

The Long Term Illness scheme applies to 15 specified diseases, and only those diseases. There is no way of getting an LTI authorisation for any other disease. The list has never changed since it was introduced in the early '70's, and there are no plans to change it in the future.

kormak

locum-motion wrote: »

As was previously pointed out, a long term illness is not necessarily a Long Term Illness!

The Long Term Illness scheme applies to 15 specified diseases, and only those diseases. There is no way of getting an LTI authorisation for any other disease. The list has never changed since it was introduced in the early '70's, and there are no plans to change it in the future.

I know... and excuse my French but it's a f*ck!ng disgrace. This govt. should be ashamed of themselves. Read this article today... really sums it up. 44 years???

http://www.thejournal.ie/no-plans-to-extend-long-term-illness-scheme-list-despite-not-being-updated-since-1970-1501667-Jun2014/