Vera Twomey/a long walk for medicine/help

28-02-2017 06:04PM

flutered wrote: »

it seems that some sort of child head shrink has to ok it, but they have not access to one, an irish answer to an irish problem

a consultant neurologist is what they are looking for.

skankkuvhima · 28-02-2017 06:46PM

jh79 wrote: »

It's all covered in the HPRA report.

https://www.hpra.ie/homepage/about-us/publications-forms/newsletters/item?id=7cb50726-9782-6eee-9b55-ff00008c97d0&t=/docs/default-source/publications-forms/newsletters/cannabis-for-medical-use---a-scientific-review

It doesn't say that in the case of Dravet syndrome that the evidence is inconclusive.

skankkuvhima · 28-02-2017 06:52PM

In fact, I read in the examiner

"A spokesperson for the Department of Health confirmed that one application for a licence for access to cannabis for a named patient has been granted by the minister, but that a second application — which is understood to be Ava’s — was not supported by any consultant caring for the patient."

So its essentially a paperwork problem or the ministers problem but it is clear that someone else in the country has been granted a license.

28-02-2017 07:09PM

skankkuvhima wrote: »

It doesn't say that in the case of Dravet syndrome that the evidence is inconclusive.

Never said it did, there is some evidence it is effective but not yet up to the standards normally required for medicine.

28-02-2017 07:10PM

skankkuvhima wrote: »

In fact, I read in the examiner

"A spokesperson for the Department of Health confirmed that one application for a licence for access to cannabis for a named patient has been granted by the minister, but that a second application — which is understood to be Ava’s — was not supported by any consultant caring for the patient."

So its essentially a paperwork problem or the ministers problem but it is clear that someone else in the country has been granted a license.

So why doesn't she go to the same neurologist as the other applicant instead of walking to Dublin with Gino?

K.Flyer · 28-02-2017 07:17PM

skankkuvhima wrote: »

In fact, I read in the examiner

"A spokesperson for the Department of Health confirmed that one application for a licence for access to cannabis for a named patient has been granted by the minister, but that a second application — which is understood to be Ava’s — was not supported by any consultant caring for the patient."

So its essentially a paperwork problem or the ministers problem but it is clear that someone else in the country has been granted a license.

This is essentially where the problem lies.
My theory, and I could be totally wrong on it, is that her own consultant is reluctant to sign off on the application for his own reasons, either due to his uncertainty about it or a moral issue.

jh79 wrote: »

So why doesn't she go to the same neurologist as the other applicant instead of walking to Dublin with Gino?

One of the hardest things to do in this country is to get another consultant in the same field to sign off on something for you, that your own consultant has refused to do, believe me, I know as I have been on that road before. Especially in the neurological field due to the risks.
It is almost impossible, due to the fact that it is a very small country and that they are all part of the same circle and for one to go against the other on signing off on something is just not the done thing, especially if the patients is unknown to them. (Told to me off the record by HSE officials and other consultants).
This is a serious catch 22 situation.
The minister himself Cannot just sign off on it as he is not medically qualified to do so. And if he did he could be held liable if something was to go badly wrong.
Some doctors and consultants are a bit more forward thinking when it comes to certain types of newer treatments, others are scared sihtless of being sued, so would rather play safe and say no. Again believe me, my family are dealing with this attitude with one particular consultant.
A very very hard position to be in and she just may end up having to go abroad to get the help her child requires.

Skyfarm · 01-03-2017 12:18AM

my tuppence worth ..

i am very very cynical based on my experience

i asked the dept for the protocols on this and they couldn't give them ,they told me go to my gp and get him to write a prescription which would be dispensed

the GP choked on his words ,there is no guidelines and the official line is they don't know enough

i went back to the dept and they put the weight on the GP,saying they couldn't do anything etc etc

they understand and they know the approach to take to prevent that prescription

I'm looking at setting up a cannibis club to stop this cruelty, i googled medical cannibis a few months ago and on joe/her or some other site the amount of people looking for aunts /uncles/fathers/brothers who are dying and looking for reliefst is so so sad

Skyfarm · 01-03-2017 12:20AM

the media is very very quiet , but the support groups are where the voice should be coming from

they won't open their money lined pockets for fear of losing status /money from govt and vested interests

01-03-2017 12:31AM

Skyfarm wrote: »

my tuppence worth ..

i am very very cynical based on my experience

i asked the dept for the protocols on this and they couldn't give them ,they told me go to my gp and get him to write a prescription which would be dispensed

the GP choked on his words ,there is no guidelines and the official line is they don't know enough

i went back to the dept and they put the weight on the GP,saying they couldn't do anything etc etc

they understand and they know the approach to take to prevent that prescription

I'm looking at setting up a cannibis club to stop this cruelty, i googled medical cannibis a few months ago and on joe/her or some other site the amount of people looking for aunts /uncles/fathers/brothers who are dying and looking for reliefst is so so sad

The access program hasn't started yet. It was only announced a few weeks ago. Nobody knows how it is going to work yet.

Skyfarm · 01-03-2017 12:38AM

jh79 wrote: »

The access program hasn't started yet. It was only announced a few weeks ago. Nobody knows how it is going to work yet.

its not the access program , its not needed as such , get a doctor to sign a prescription and its "legal" (its much more than that )

its the same as growing , two doctors can grow for research, hence green light

ThisRegard · 01-03-2017 12:42AM

skankkuvhima wrote: »

but it is clear that someone else in the country has been granted a license.

That's been known for a while as it got plenty of media coverage, I think it's another child that's 2 or 3 years of age.

01-03-2017 12:42AM

Skyfarm wrote: »

its not the access program , its not needed as such , get a doctor to sign a prescription and its "legal" (its much more than that )

its the same as growing , two doctors can grow for research, hence green light

Where are getting this from??

All prescribed drugs need a license / approval from the HPRA.

You might as well write weed on a piece of paper and hand it into boots , you'll have the same level of success.

Graces7 · 01-03-2017 07:10AM

One aspect not mentioned. If it is granted and there are adverse effects? Law suit time?

We get angry re eg thalidomide and opren and rightly so. Not properly tested etc.

This is a small child.

They have to be very careful and rightly so.

Skyfarm · 01-03-2017 09:04AM

Graces7 wrote: »

One aspect not mentioned. If it is granted and there are adverse effects? Law suit time?

We get angry re eg thalidomide and opren and rightly so. Not properly tested etc.

This is a small child.

They have to be very careful and rightly so.

id be more concerned about the effects of not having it and the effects of seizures
on the body than the effects of a benign plant https://www.dravetfoundation.org/what-is-dravet-syndrome/

VinLieger · 01-03-2017 11:41AM

Graces7 wrote: »

One aspect not mentioned. If it is granted and there are adverse effects? Law suit time?

We get angry re eg thalidomide and opren and rightly so. Not properly tested etc.

This is a small child.

They have to be very careful and rightly so.

Typical uninformed Helen Lovejoy esque reply

If you think canniboids havent been pretty heavily tested your delusional, comparing this to thalidomide in the 40's and 50's when science and medicine were effectively still in the dark ages compared to the advancements we have now is just ridiculous

skankkuvhima · 01-03-2017 12:13PM

OSI wrote: »

Indeed, and there are increasing numbers of studies suggesting the use of cannabinoids at a younger age with a still developing brain can result in alterations in the structure and function of the brain itself:

I suppose you have to weigh that up against

"15-20% mortality rate due to SUDEP (Sudden Unexplained Death in Epilepsy), prolonged seizures, seizure-related accidents such as drowning, and infections "

01-03-2017 12:32PM

VinLieger wrote: »

Typical uninformed Helen Lovejoy esque reply

If you think canniboids havent been pretty heavily tested your delusional, comparing this to thalidomide in the 40's and 50's when science and medicine were effectively still in the dark ages compared to the advancements we have now is just ridiculous

They haven't , that is why its use as medicine is controversial.

Here is a link to the HPRA report;

"There appears to be a significant gap between the public perception of effectiveness and safety, and the regulatory requirement for scientific data which is mandatory to determine the role of cannabis as a medicine. Any proposal to circumvent the medicines regulatory system, established by law, would require careful consideration, so as to avoid unintended consequences, and lower standards of patient protection."

https://www.hpra.ie/homepage/about-us/publications-forms/newsletters/item?id=7cb50726-9782-6eee-9b55-ff00008c97d0&t=/docs/default-source/publications-forms/newsletters/cannabis-for-medical-use---a-scientific-review

VinLieger · 01-03-2017 01:03PM

jh79 wrote: »

They haven't , that is why its use as medicine is controversial.

Here is a link to the HPRA report;

"There appears to be a significant gap between the public perception of effectiveness and safety, and the regulatory requirement for scientific data which is mandatory to determine the role of cannabis as a medicine. Any proposal to circumvent the medicines regulatory system, established by law, would require careful consideration, so as to avoid unintended consequences, and lower standards of patient protection."

https://www.hpra.ie/homepage/about-us/publications-forms/newsletters/item?id=7cb50726-9782-6eee-9b55-ff00008c97d0&t=/docs/default-source/publications-forms/newsletters/cannabis-for-medical-use---a-scientific-review

So do you think that the HRPA have more or less information than the other health organisations around the world that have okayed its use?

Or could it possibly be that this country still has an ignorant heavy bias against it regardless of evidence cus "drugs are bad mkay?"

01-03-2017 02:04PM

VinLieger wrote: »

So do you think that the HRPA have more or less information than the other health organisations around the world that have okayed its use?

Or could it possibly be that this country still has an ignorant heavy bias against it regardless of evidence cus "drugs are bad mkay?"

Read the report ! It has nothing to do with morals, there is no bias. Evidence that meets regulatory requirements doesn't exist or is insufficient. These requirements are the same for all drugs.

Medical marijuana in the US is not legally classified as medicine. There are no prescriptions, they invented a separate system (GP Letter of Recommendation) to facilitate access in spite of the lack of sufficient evidence of effectiveness.

I think you owe Graces7 an apology. You're not exactly well informed yourself.

VinLieger · 01-03-2017 02:18PM

jh79 wrote: »

Read the report ! It has nothing to do with morals, there is no bias. Evidence that meets regulatory requirements does not exist. These requirements are the same for all drugs.

Medical marijuana in the US is not legally classified as medicine. There are no prescriptions, they invented a separate system (GP Letter of Recommendation) to facilitate access in spite of the lack of sufficient evidence of effectiveness.

I think you owe Graces7 an apology. You're not exactly well informed yourself.

Ive witnessed the effects first hand on someone sufferring from epilepsy thank you very much so im happy in the knowledge im more informed on the benefits of this than either of you. You can think i owe someone an apology all you want but unless you've witnessed first hand the difference it can make for someone then you don't actually understand what you are talking about

01-03-2017 02:20PM

VinLieger wrote: »

Ive witnessed the effects first hand on someone sufferring from epilepsy thank you very much so im happy in the knowledge im more informed on the benefits of this than either of you. You can think i owe someone an apology all you want but unless you've witnessed first hand the difference it can make for someone then you don't actually understand what you are talking about

You think your observations outside of a clinical trial is sufficient evidence for the HPRA to approve it as medicine??

01-03-2017 02:24PM

VinLieger wrote: »

Ive witnessed the effects first hand on someone sufferring from epilepsy thank you very much so im happy in the knowledge im more informed on the benefits of this than either of you. You can think i owe someone an apology all you want but unless you've witnessed first hand the difference it can make for someone then you don't actually understand what you are talking about

So how effective is it per 100 patients?

What are the adverse effects per 1000?

VinLieger · 01-03-2017 02:47PM

jh79 wrote: »

You think your observations outside of a clinical trial is sufficient evidence for the HPRA to approve it as medicine??

No but I think Vera Twomeys is for her daughter to be granted access, tell me im wrong, in fact if you truly believe it you should go find her and explain to her how what she is doing is equally wrong

01-03-2017 02:57PM

VinLieger wrote: »

No but I think Vera Twomeys is for her daughter to be granted access, tell me im wrong, in fact if you truly believe it you should go find her and explain to her how what she is doing is equally wrong

You said Graces7 was ill informed. She had a perfectly valid point. It is an untested medicine by normal standards.

You are ill informed on what the regulatory requirements are for medicine.

I think she should have access but i understand the reluctance of the neurologist to allow it.

Maybe the mother should sign a waiver absolving the HSE of legal responability for any adverse effects .

Sam Kade · 01-03-2017 02:59PM

At the rate she's walking she'll be in Dublin by Friday.

Graces7 · 01-03-2017 06:15PM

Skyfarm wrote: »

id be more concerned about the effects of not having it and the effects of seizures
on the body than the effects of a benign plant https://www.dravetfoundation.org/what-is-dravet-syndrome/

Indeed yes but they always cover their backs. ALways that comes first. Not the person.

Given some of the damages awarded in recent times for minor things?

Graces7 · 01-03-2017 06:25PM

VinLieger wrote: »

Ive witnessed the effects first hand on someone sufferring from epilepsy thank you very much so im happy in the knowledge im more informed on the benefits of this than either of you. You can think i owe someone an apology all you want but unless you've witnessed first hand the difference it can make for someone then you don't actually understand what you are talking about

You are speaking with your heart rather than your head and that is a sign of great compassion and caring.

The tone of your post was.. revealing and interesting. Very revealing indeed.

Heart engaged. Head dismissed.

But it is not clinical experience or wisdom.

This is not a certain cure.

And yes I have seen and cared for a young person with severe epilepsy and I still say test and take great care. Fixing one fit is great but if that causes damage?

And no I do not trust cannabis etc. I live in constant often very severe and intractable pain and some folk have offered me illegal drugs, in the same spirit as you are doing.

I refuse. Period. And refuse any new drugs also. Been caught that way in the past and took a long time to recover. Some of the damage is permanent.

If the lady really thinks this is the cure, then she does need to face reality that no amount of walks etc will avail and she does need to take her child overseas.

Please God someone helps her to do that and soon.

Graces7 · 01-03-2017 06:27PM

jh79 wrote: »

You said Graces7 was ill informed. She had a perfectly valid point. It is an untested medicine by normal standards.

You are ill informed on what the regulatory requirements are for medicine.

I think she should have access but i understand the reluctance of the neurologist to allow it.

Maybe the mother should sign a waiver absolving the HSE of legal responability for any adverse effects .

Sadly here that would not work. It would mean a dr would have to go against colleagues and ethical guides and rules. Would be professional suicide.

jameorahiely · 01-03-2017 06:28PM

It's disgusting that this woman has to do this. Ffs give her the drugs.

01-03-2017 06:29PM

jameorahiely wrote: »

It's disgusting that this woman has to do this. Ffs give her the drugs.

It's ridiculous alright, but hey we live in Ireland, it's hardly surprising...

Vera Twomey/a long walk for medicine/help

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