Vera Twomey/a long walk for medicine/help

Skyfarm

I am going to put my hands up and say i have a vested interest with vera and her walk for cannibbiss medicine for her daughter Eva as i use medical cannibis to curb the effects of a rare disease that dwells within


Im moved to write this post simply by the deep reverence and utter respect i have for the work done by Vera to heal the effects of a disease on her familly .

if there was ever a title of Mother of the year it should be given to this embodiment of a Mother who will do everything possible to correct this imbalance

i was moved to tears last night and thought that not only is this woman walking for her daughter, but she is also walking for the thousands of people who need this medicine

as i type this , my mind is moving to my next job , which is to drive to a local woman who is dying from c, she wants to go the cannibis route but she worried the guards will come in her door (her son knows a man who knows a man who will get a bag,) as she lies dying her mind is protecting those around her and the trouble they will get in ..

my tears were brought when i thought of the weight this woman is carrying, my legs haven't being used in while , but vera is walking for me

if any person on boards can help support or beep a horn on the route then this woman deserves the shove of the nation as she struggles

theirs a deep injustice when we can get thousands on the streets to protect the water falling from the sky , but when it comes to a little girl who is crying out for healing the nation collectively shrugs and says its the government fault, its really up to us as humans to tell this government to stop this imbalance .

rise people rise ..

I'm going to join the walk at some stage, anybody feel like pushing my chair ?

AliciaS

I know. Its really a crap situation. A poor little girl is suffering everyday because she is being denied a medicine that could potentially help her. I think its due to the side effects that it won't be prescribed to her but why not do a trial run.

Noddyholder

Heard Vera twomey on the radio last week & the pain her daughter is going through. It seems that its more red tape & laws of the land that are stopping the treatment being prescribed here than anything else. But I am sure if the politicians really wanted to they could change the law over night, Didn't they do it on head shops a few years ago ? guess this problem is not being taken very seriously for the politicians.

CelticSu

Shocking that a Mam has to do this to help her child , Good luck Vera xxxx

Your Face

Poor girl. Really rough situation. She can have up 20 seizures a day.
I dont understand why the powers-that-be don't even trial the treatment.

Sapphire3

I don't understand it either.
It's disgraceful that a mother has to do this to get the politicians to listen to her. I bet if it was one of the politicians children who had this awful illness, the bill allowing usage of medicinal cannabis will be pushed through and passed. Poor girl, I hope something is done soon for her.

rob316

Problem is the world with a brain knows medicinal cannabis can help treat the symptoms and pain of many illnesses effectively but BIG PHARMA have too much of a vested interest in less effective drugs that they will make more money on. Its not tinfoil hat stuff its fact and applies to many other illnesses.

Its heartbreaking hearing this poor woman's struggle everday. The help is their for her and shes been told she cant have it for her child. Clear the redtape Harris you absolute fool.

Graces7

Am wondering though as we have heard only one side of this. Maybe there is a good medical reason?

She needs to take the little girl overseas. All the walks and protests here will achieve nothing and will polarise the health officials.

Remembering the family in the UK a while ago who illegally took their wee lad overseas for proton beam therapy for his cancer?

Warrant out for him but it worked and now that treament will be available in the UK

We do have agreements with EU countries. Needs some lateral thinking

Your Face

Graces7 wrote: »

Am wondering though as we have heard only one side of this. Maybe there is a good medical reason?

She needs to take the little girl overseas. All the walks and protests here will achieve nothing and will polarise the health officials.

Remembering the family in the UK a while ago who illegally took their wee lad overseas for proton beam therapy for his cancer?

Warrant out for him but it worked and now that treament will be available in the UK

We do have agreements with EU countries. Needs some lateral thinking

This post is a cornucopia of stupidity.

Maybe just give the child the non-psychoactive cannabis oil at home and not drag a child with Dravets syndrome across the continent.

ScumLord

Noddyholder wrote: »

Heard Vera twomey on the radio last week & the pain her daughter is going through. It seems that its more red tape & laws of the land that are stopping the treatment being prescribed here than anything else. But I am sure if the politicians really wanted to they could change the law over night,

Of course they could. Medical cannabis is restricted for moral reasons. The politicians will cave to this pressure because they have no morals of their own. At the moment their sociopath brains are running the numbers on whether there's more voters in favour of medical cannabis, or a silent majority that still cling onto the old ways.

skankkuvhima

It's baffling how little coverage this is getting in the media. Nothing in RTE, Irish times. Odd

rob316

skankkuvhima wrote: »

It's baffling how little coverage this is getting in the media. Nothing in RTE, Irish times. Odd

RedFm and Neil Prendeville the only ones keeping it going. Looked out on the news last night and nothing plenty about the ****ing Oscars though.

jh79

rob316 wrote: »

RedFm and Neil Prendeville the only ones keeping it going. Looked out on the news last night and nothing plenty about the ****ing Oscars though.

Is the issue here the civil servants she is dealing with in the HSE not being clear on the paperwork required?

Other have got access to cannabis oil even in the last few months why is it so difficult for her?

freshpopcorn

Is the issue the girls GP will sign off her to access medical cannabis but the consultant won't sign off on it? Surely they've a valid reason?

jh79

freshpopcorn wrote: »

Is the issue the girls GP will sign off her to access medical cannabis but the consultant won't sign off on it? Surely they've a valid reason?

My take on it is , her GP applied for the exemption but the HSE refused the application saying they needed a neurologist to apply.

skankkuvhima

The issue (as I understand it) is that the HSE require a Consultant Paediatric Neurologist to sign off on this medicine, a GP cannot do it. There are a number of Consultant Paediatric Neurologists willing to sign off on the drug being prescribed to Eva however they claim they need training on this drug first (or possibly on the condition, not sure).

If the state is going to control the dispensation of the drugs then the onus is on them to provide the training for the appropriate professionals.

jh79

skankkuvhima wrote: »

The issue (as I understand it) is that the HSE require a Consultant Paediatric Neurologist to sign off on this medicine, a GP cannot do it. There are a number of Consultant Paediatric Neurologists willing to sign off on the drug being prescribed to Eva however they claim they need training on this drug first (or possibly on the condition, not sure).

If the state is going to control the dispensation of the drugs then the onus is on them to provide the training for the appropriate professionals.

The state hasn't begun the control of cannabis oil through the HPRA yet.

skankkuvhima

From http://www.breakingnews.ie/ireland/cork-mother-crushed-as-hse-rejects-daughter-avas-application-for-medical-cannabis-778594.html (last week)

It reaffirmed what the Minister said when the HPRA report was released a fortnight ago, namely that a pilot access programme for cannabis based treatments would be rolled out for patients with specific conditions, including severe epilepsy.
"Until such time as the necessary legislative amendments have been made to facilitate the implementation of the Cannabis Access Programme, it remains open to the Minister to consider granting a licence to an Irish registered doctor for access to medicinal cannabis for named patients."

From reading this it would appear to be 100% in the power of the minister to grant a license for Ava to get this medicine. However the HSE turned down her application for medicinal cannabis for Ava.

jh79

skankkuvhima wrote: »

From http://www.breakingnews.ie/ireland/cork-mother-crushed-as-hse-rejects-daughter-avas-application-for-medical-cannabis-778594.html (last week)



From reading this it would appear to be 100% in the power of the minister to grant a license for Ava to get this medicine. However the HSE turned down her application for medicinal cannabis for Ava.

Is it the HSE or the Minister that is insisting on a consultant neurologist rather than a GP?

skankkuvhima

jh79 wrote: »

Is it the HSE or the Minister that is insisting on a consultant neurologist rather than a GP?

Does it matter? If this statement is accurate - "it remains open to the Minister to consider granting a licence to an Irish registered doctor for access to medicinal cannabis for named patients." - then the minister can resolve this very quickly. So, why isn't he?

scamalert

I agree on term that theres no MD in Ireland that would have any experience in treating someone or recommending cannabis,since by the law its no go drug,thus 0 experience.Thus state cant allow permission since theres no one qualified to perform such treatment,not to mention lack of cannabis oil,proper manufacturing etc.its like closed loop expecting someone to sign off when there isnt a single trained professional in the field.

So its obiviosly that such people are left with few options which is to relocate or move where it has been studied and no bull in getting test or treatment with it,or someone who has nothing to lose and might die either way getting it by illegal means.

Since someone pointed how can you drag kid half way across the world,well how do you know that oil will work for that kid if there haven't been any studies done since law doesn't even permit it,here and again no one qualified to be able to sign of on such treatment,thus unless parents went where it legal or have obtained it in other ways to test it,there's hardly any chance government would suddenly implement change even thou to cases advocated here its not more dangerous then letting someone try aspirin.

skankkuvhima

My understanding is that there is plenty research and it is legal in many countries.

skankkuvhima

As far as I know Avas GP is happy to prescribe the drug and the minister has the power to facilitate that.

If anyone has more information as to why the girl can't have the medicine I'd be interested to hear it.

jh79

skankkuvhima wrote: »

Does it matter? If this statement is accurate - "it remains open to the Minister to consider granting a licence to an Irish registered doctor for access to medicinal cannabis for named patients." - then the minister can resolve this very quickly. So, why isn't he?

I've no idea but he has given licenses to others, it's very strange.

jh79

skankkuvhima wrote: »

My understanding is that there is plenty research and it is legal in many countries.

While there is some evidence that it is effective it is not of the quality normally required for medicine.

flutered

Graces7 wrote: »

Am wondering though as we have heard only one side of this. Maybe there is a good medical reason?

She needs to take the little girl overseas. All the walks and protests here will achieve nothing and will polarise the health officials.

Remembering the family in the UK a while ago who illegally took their wee lad overseas for proton beam therapy for his cancer?

Warrant out for him but it worked and now that treament will be available in the UK

We do have agreements with EU countries. Needs some lateral thinking

i heard her saying that if she lived in oz it would be readily advailable

flutered

skankkuvhima wrote: »

As far as I know Avas GP is happy to prescribe the drug and the minister has the power to facilitate that.

If anyone has more information as to why the girl can't have the medicine I'd be interested to hear it.

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

flutered

scamalert wrote: »

I agree on term that theres no MD in Ireland that would have any experience in treating someone or recommending cannabis,since by the law its no go drug,thus 0 experience.Thus state cant allow permission since theres no one qualified to perform such treatment,not to mention lack of cannabis oil,proper manufacturing etc.its like closed loop expecting someone to sign off when there isnt a single trained professional in the field.

So its obiviosly that such people are left with few options which is to relocate or move where it has been studied and no bull in getting test or treatment with it,or someone who has nothing to lose and might die either way getting it by illegal means.

Since someone pointed how can you drag kid half way across the world,well how do you know that oil will work for that kid if there haven't been any studies done since law doesn't even permit it,here and again no one qualified to be able to sign of on such treatment,thus unless parents went where it legal or have obtained it in other ways to test it,there's hardly any chance government would suddenly implement change even thou to cases advocated here its not more dangerous then letting someone try aspirin.

if its legal in oz you would think that they have their homework done on it

scamalert

skankkuvhima wrote: »

As far as I know Avas GP is happy to prescribe the drug and the minister has the power to facilitate that.

If anyone has more information as to why the girl can't have the medicine I'd be interested to hear it.

well if you were politician id imagine youd have millions reason why not,but then again youd hardly lose any sleep getting paid that much over few kids and people dying here and there,that's the bottom line that it comes down to really.

Claiming it needs research is only excuse for pharmacies to make sure more expensive alternatives are sold,not smth that can be grown in ones back garden.

Flutered:just been sarcastic on that post since jh79 would troll this thread into oblivion about more research needed,yada yada its bad for you,take some morphine and down it with benzos and whatever flies is better option,since thats where money is made,theres a reason pharma companies are into billions and not because they sell harmless stuff or effective,but because they own the rights to it,which would be impossible to do with weed,since simple permission and outsourcing few people who already have decades of experience would solve many issues and miseries,but thats flood gate for everyone else if proven that smth as simple could be so effective.

skankkuvhima

jh79 wrote: »

While there is some evidence that it is effective it is not of the quality normally required for medicine.

Specifically how is the evidence lacking?

jh79

skankkuvhima wrote: »

Specifically how is the evidence lacking?

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

jh79

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

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

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.

jh79

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.

jh79

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

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

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

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

jh79

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

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

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.

jh79

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

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

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

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

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 "

jh79

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

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?"

jh79

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

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