Vera Twomey/a long walk for medicine/help

Skyfarm · 28-02-2017 10:26AM #1

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 · 28-02-2017 10:57AM

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 · 28-02-2017 11:04AM

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 · 28-02-2017 11:26AM

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

Your Face · 28-02-2017 11:43AM

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 · 28-02-2017 11:47AM

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 · 28-02-2017 12:51PM

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 · 28-02-2017 12:57PM

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 · 28-02-2017 01:06PM

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 · 28-02-2017 01:23PM

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 · 28-02-2017 02:58PM

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

rob316 · 28-02-2017 04:16PM

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.

28-02-2017 04:34PM

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 · 28-02-2017 04:45PM

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?

28-02-2017 04:52PM

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 · 28-02-2017 04:52PM

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.

28-02-2017 04:54PM

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 · 28-02-2017 04:59PM

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.

28-02-2017 05:03PM

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 · 28-02-2017 05:11PM

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 · 28-02-2017 05:12PM

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 · 28-02-2017 05:15PM

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

skankkuvhima · 28-02-2017 05:20PM

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.

28-02-2017 05:36PM

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.

28-02-2017 05:38PM

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 · 28-02-2017 05:41PM

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 · 28-02-2017 05:43PM

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 · 28-02-2017 05:44PM

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 · 28-02-2017 05:46PM

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 · 28-02-2017 05:47PM

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?

28-02-2017 06:02PM

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

Vera Twomey/a long walk for medicine/help

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