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Peter Reynolds

The life and times of Peter Reynolds

Posts Tagged ‘epilepsy

There Was Grenfell, Then The Windrush Generation And Now Theresa May Fiddles While Alfie Dingley Faces Death

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When Will This Tyrant Be Overthrown?

The campaign to save Alfie Dingley’s life looked to have succeeded on 20th March when 108 MPs met Alfie and family at Parliament. That same day, accompanied by Sir Patrick Stewart, a petition of over 370,000 signatures was delivered to Downing Street and Theresa May herself met with the family and encouraged them that everything possible would be done to help. Originally, the Home Office were suggesting that they might issue a licence to allow a bespoke trial of medical cannabis but that changed to a suggestion that they would consider issuing a licence on a ‘compassionate basis’. They also  indicated that they might issue the licence for Alfie within days rather than weeks.

Home Office Minister Nick Hurd MP appears to support the petition delivered to Downing Street. Today (3rd May 2016) the petition has gown to over 650,000 signatures.

A  formal application for a licence was submitted to the Home Office on 16th April 2018 by Alfie’s GP and a consultant neurologist. This was raised at Prime Minister’s Questions two days later and once again Mrs May expressed sympathy and promised that the Home Office would look at it “speedily”.

Now, Hannah, Alfie’s mother, has been told that it could take up to four months for the application to be considered and even then no one can be certain what the decision will be.

Apparently this is because the medical cannabis oil needs to be ‘tested’, whatever that means.  Is this a U turn to requiring a full clinical trial to be undertaken? If so, how can a clinical trial be undertaken on one boy with a particular form of epilepsy so rare that he is said to be one of only nine boys in the world?  Clearly a clinical trial with the normal double blind testing is impossible.  So what other form of ‘testing’ needs to be carried out?

The oil has already been tested on Alfie under the supervision of a consultant neurologist in the Netherlands.  There, having experienced up to 30 seizures per day in the UK, after taking three drops of oil per day he had only two seizures in two months.  The oil is made by Bedrocan, the Netherlands government official contractor for the production of cannabis for medical use and already complies with international standards for Good Manufacturing Practice (GMP).

The only conclusion that can be drawn is that this is yet more procrastination and deliberate delay by a government that is notorious for its inhumane treatment of many people.  Theresa May has a long standing and well documented record of being opposed to any drug law reform and of dismissing the campaign for access to cannabis for medical use as ‘just an excuse to take cannabis’.  With the sole exception of President Duterte of the Philippines, who is engaged in a murderous campaign of extra-judicial execution of suspected drug dealers, Mrs May is the only world leader still calling for the ‘war on drugs’ to continue.

After scandal after scandal after scandal it is difficult to see what will finally bring Mrs May down.  In Britain, where the idea of democracy has become little more than a bad joke, it seems that infighting within the Conservative Party over Europe is a more likely reason for her downfall than the grave abuses of individuals for which she is ultimately responsible.

Let’s be 100% clear, the Misuse of Drugs Act 1971 makes specific provision for any action that would otherwise be unlawful under the Act to be permitted under licence by the Home Secretary.  It would take a single stroke of Sajid Javid’s pen to save Alfie Dingley’s life and Theresa May could have ordered that months ago.

Famously, Mrs May is a practising Christian.  Surely, there must be a special place in hell reserved for her.

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Written by Peter Reynolds

May 3, 2018 at 3:54 pm

This is Paul Kenward, husband of Victoria Atkins MP who is the UK drugs minister. He grows cannabis for a living.

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Mr Kenward is managing director of British Sugar which grows cannabis under contract to GW Pharmaceuticals at its 45 acre greenhouse in Wissington, Norfolk.  As confirmed by British Sugar, the cannabis is for production of Epidiolex, GW’s epilepsy medicine which is understood to be 98% cannabidiol (CBD).

British Sugar website

Epidiolex is not yet licensed as a medicine although it is currently with the FDA for US approval and the European Medicines Agency for approval within the EU including the UK.  It’s unclear how the British Sugar operation can be legal as according to the Home Office it only issues licences for research purposes.  Only after the medicine has received a marketing authorisation could it be legally grown for commercial purposes.

This is Mrs Kenward, who prefers to be known by her maiden name of Atkins, in a recorded discussion with Kevin Sabet, America’s most notorious anti-cannabis campaigner who is fighting desperately to see the wave of legalisation in the USA reversed.

Victoria Atkins MP is now a junior Home Office minister with responsibility for drugs policy.  She has spoken out forcefully against any form of legalisation or regulation of cannabis in the UK.  She also rigidly maintains the government’s line that there is ‘no therapeutic value’ in cannabis.  Of course, when it comes to her husband she takes a different view and, of course, she has authority to see licences issued entirely on her own discretion.

Ms Atkins spoke about drugs regulation in Parliament in July 2017:

“We are talking about gun-toting criminals, who think nothing of shooting each other and the people who carry their drugs for them. What on earth does my hon. Friend think their reaction will be to the idea of drugs being regulated? Does he really think that these awful people are suddenly going to become law-abiding citizens?”

Isn’t it is her husband who is exactly the person she is talking about? He seems to be doing just fine as a “law-abiding citizen”.

Together with the Home Secretary, Amber Rudd MP, other cabinet minsters, including prime minister Theresa May, who was the previous Home Secretary, Ms Atkins is running a giant cannabis cartel.  As shown by the International Narcotics Control Board, the UK is in fact the world’s largest producer, stockist and exporter of ‘legal’ medical cannabis.

UK citizens are denied any access to medical cannabis at all, except in the form of another licensed GW product known as Sativex.  However, in practice, Sativex is virtually impossible to obtain.  It is believed that about one million UK citizens use cannabis illegally for medical purposes.

No, this is not a spoof article.  This story is so incredible and outrageous that you really couldn’t make it up.  Yes, the picture of Paul Kenward is photoshopped but all these facts are easily verifiable.

My 11-Year Old Dog, Capone, Is A Miracle Of Medicinal Cannabis.

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capone-saltmarsh

Capone Stanley Reynolds, to give him his full name, has been my faithful, handsome and sweet-natured companion since 2007.  He really is a lovely dog, a strong silent type, very self-contained, gentle, calm and, I believe, wise.

Sadly, he developed epilepsy around the age of five and a couple of years later was struck with severe arthritis which means for the last three years or so he hasn’t been able to walk with me as he used to. However, regular use of CBD oil has transformed his life and I think we will have several more years together before he goes to that neverending walk in the sky where he will be able to run and play as he did when he was younger.

capone-profileHe’s a cross between a Staffordshire Bull Terrier and a German Shorthaired Pointer – which is where he gets his gorgeous coat from, a mottled mixture of grey, black, white and a few touches of orange.  I believe that, apart from his siblings, he is unique and he attracts a great deal of attention.  People say he looks like a leopard and several times I have been offered large sums of money for him.

We have walked hundreds of miles together.  He first came to live with me when I lived in Emsworth, Hampshire.  We learned the pleasure of walking together around Chichester Harbour and I had an article about our adventures  published in Country Walking magazine.

I had once before, in the late 70s, seen someone fall down on a zebra crossing while having an epileptic fit.  Nothing prepares you though for when someone you love first endures a seizure.  It is frightening and deeply distressing.  I can only despair at what it must be like for a parent whose small child suffers so.

Quickly though, you become used to it.  You have to, for your own sake and so that you can look after the one who is fitting.  In fact, there’s not a lot you can do, except protect them from hurting themselves while thrashing about.  Every seizure is different but for Capone they all start with the most intense rigidity, arched back, teeth clenched and violent shaking.  Then, after a minute or so, he will appear to relax and his legs will start a frantic bicycling motion while he froths at the mouth and usually loses control of his bladder, weeing everywhere.  Occasionally he will go back into the rigid phase but at some point, usually within three or four minutes, he will jump slightly as if he’s just woken up – and indeed he has.  Then he wants to stand up, although he doesn’t have proper control of his legs and he will fall over or walk into the wall or furniture.  For up to an hour afterwards he will be wide-eyed, panting crazily and usually ravenously hungry.  Gradually he calms down, until at last he sleeps, exhausted.

Capone’s seizures come in clusters over a 36 to 48 hour period.  To begin with it was about every three hours, so it’s utterly draining, all through the night, never more than an hour or two’s sleep before the next one starts.  When at last it comes to an end, it takes three or four days for him to recover.  It’s almost like he’s had a stroke and he seems stupid, off balance and doesn’t really seem to know where he is.  Thankfully, he always has recovered, right back to normal again and a week later it’s all forgotten.

I can’t remember the exact sequence of events now but it was around this time that the story of Charlotte Figi became known, the remarkable effect of CBD oil on this small child with Dravet’s Syndrome, a severe form of paediatric epilepsy.  It wasn’t long before I decided to try Capone on CBD.

Capone & Carla3

Carla And Capone

His arthritis had also dramatically worsened by now.  We went from walking five miles every day to the point where it was taking the same amount of time for him just to walk half a mile or so.  Both I and my other dog, Carla, were frustrated and suffering from a lack of exercise. Eventually I had to make the heartbreaking decision to leave him at home and just Carla and I would go for a walk.  With a lack of exercise he began to put on weight and it became a vicious circle.  About three years ago it had reached the stage where he couldn’t walk more than about 20 yards and I feared I would have to make the toughest decision of all.  In this state, when a cluster of seizures came along, he truly was a pathetic sight, my wonderful, beautiful dog and friend in so much distress and pain.

I tried various CBD products.  I didn’t really know what I was doing and they didn’t seem to have much impact.  But then, nothing did. The best the vet could offer was rectal tubes of diazepam, like a small toothpaste tube with a nozzle that you stick up his bum and squeeze.  They had no impact at all. I have given him 30mg of diazepam while he was fitting (enough to lay me flat out for 24 hours) and it’s made absolutely no difference.  But then neither did CBD.  There was none of this immediate effect like you see on the many YouTube videos of children being dosed with CBD oil.

pluscbd-goldGradually though the frequency and intensity of his seizures started to diminish.  I had settled on using PlusCBD Gold oil.  Two grams of this dissolved in olive or hempseed oil contains about 500mg of CBD and that would last for a month or so, giving him a dropper full every morning with his breakfast.

He was walking better. On a good day he could now manage a couple of hundred yards.  In the summer he was able to do his very favourite thing and walk up the garden into full, unshaded sunlight and spend most of the day there sleeping on the lawn.  The seizures seemed to have stopped.

Then, perhaps a year ago, I quadrupled his dose.  I now use LoveHemp 20% oil which provides a full 2000mg of CBD.  I dissolve this inlovehemp-20 olive or hempseed oil in a 50ml dropper bottle and he continues to get one dropper full every day.

In the past two years, Capone has had just one cluster of seizures.  It took place over the same period but there were far fewer fits of much less intensity, perhaps seven or eight over 48 hours.  He can walk a few hundred yards now.  He’ll never be the vigorous, fast-running dog he once was but occasionally I take him for a slow walk now for half an hour or so.  If he sees another dog he gets excited and gets up a rather ungainly and clumsy turn of pace – but it’s almost a run and he’s still Capone and I treasure every minute that we have together.  CBD oil, or as it should be more accurately termed, low-THC whole plant cannabis extract, has saved his life.

The Man From The MHRA. Endangering Public Health With Precipitate Action On CBD.

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Dr Ian Hudson, Chief Executive, MHRA

Dr Ian Hudson, Chief Executive, MHRA

The Medicines and Healthcare Products Regulatory Agency (MHRA) apparent decision to designate cannabidiol (CBD) as a medicine is an unholy mess and has been handled about as badly as it is possible for a government agency to deal with a matter of public safety.

The desk of Dr Ian Hudson, the Chief Executive, will shortly be groaning under the weight of correspondence from MPs asking him to explain exactly what is going on.  We know that the MHRA call centre has been swamped with calls from people desperate for information and in fear that they will be cut off from supplies of the food supplement that is so important for their health.  Many are now being told that no final decision has been taken and everyone is in limbo waiting for some coherent response.  We say “apparent decision” because nothing is clear, no public statement has been issued and anything you have seen in the press is from responses to individuals.

Crispin Blunt, the Conservative MP and a member of the CLEAR advisory board has written to Dr Hudson urging him to meet with CLEAR, Professor Mike Barnes and the newly-formed UK Cannabis Trade Association to discuss what interim arrangements can be put in place.  Tens of thousands of people’s health has been placed in jeopardy and not for trivial matters.  People suffering from serious conditions such as epilepsy, chronic pain, anxiety and Crohn’s Disease have come to rely on CBD products to maintain their health. There are also hundreds of jobs in danger at suppliers providing CBD to the UK market.

We know that many CLEAR members have asked their MP to write to the MHRA seeking clarification.  In Crispin Blunt’s letter he goes further.

“The decision to designate CBD as a medicine is directly contradicted by the Home Office’s position that cannabis has no medicinal value.  It is vital that we do not let this anomaly in government policy cause harm to people’s health. I should be grateful, therefore, if you could explain how the MHRA reached its decision, the consultations it undertook, which specific regulatory regime it proposes for these products and whether the continued supply of these products, regulated as food supplements, can be ensured until such time medicinal marketing authorisations can be obtained.”

CLEAR has received a holding response from the MHRA indicating that a meeting will be arranged and that we will hear by the end of this week. Responsible action from a government agency that is supposed to protect, not endanger public health is urgently needed.

 

My Baby Boy, Capone, Is Dying.

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Classic 1Never has there been a more faithful friend.

Capone is only nine, going on 10 but I know that his time is approaching quickly, far too fast for me.

He saved me when I escaped London from a woman and a destructive lifestyle.  We used to walk five miles every day – at least.  Now he has to be encouraged every step, at best half a mile then I have to take him home and Carla and I go out again for exercise

He has a strong, stable, self-contained personality.  He is loving, obedient but independent.  He is my guide as much as I am his master.

He has severe arthritis in all four legs, particularly around the elbows but he also has some sort of spinal problem and you can see it clearly from the way he walks.  For some months anti-inflammatories seemed to help but no longer.  Now he is on 300mg gabapentin twice a day and there has been an improvement, without evident side effects.

He also developed epilepsy a few years ago and about every six months he has a cluster of about a dozen seizures over 24 – 36 hours.

I shall be by his side until the final moment and that will be a very difficult decision to make.  As long as he is happy and enjoying life I will look after him. When he finally goes to that neverending walk in the sky his legs won’t ever hurt again, the sun will always shine and there will be deer and rabbits to chase around every corner.

Written by Peter Reynolds

February 8, 2015 at 12:44 pm

Medicinal Cannabis AdVan Campaign in London.

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Artist's Impression

Artist’s Impression

Join The Campaign For Medicinal Cannabis On A Doctor’s Prescription.

Despite overwhelming evidence, the UK government insists that cannabis has “no medicinal value”.  Present policy is deeply cruel and means that at least one million people in Britain are forced to become criminals in order to deal with their pain, suffering or disability.

We must change this dreadful and unjust policy. It’s time to help rather than persecute people who genuinely need cannabis to improve their health. DONATE HERE.

The AdVan Campaign.

CLEAR is the UK’s leading drugs policy reform group with more than 270,000 followers. We will run an AdVan for one week in central London during the busy pre-Christmas period.  This will deliver the simple, direct message that you see above and it will be backed by a supporting PR campaign, lobbying of government ministers and MPs as well as further information on the CLEAR website.

Please donate whatever you can.  Every pound makes a difference.  We need to raise £3500 to run the AdVan for one week.  If we raise more we will run it for longer. DONATE HERE.

Please Donate Now!

 

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Our Simple And Reasonable Request To UK Government.

In 1998, GW Pharmaceuticals was granted a licence to grow cannabis and its cannabis oil medicine, Sativex, is now approved but doctors are prevented from prescribing it because it is so fantastically expensive.

The Dutch government approves a cannabis medicine called Bedrocan which provides exactly the same as Sativex at a tiny fraction of the price. Sativex costs between £375 – £560 per month. Bedrocan costs £35 – £95 per month.

All we ask is that if a doctor prescribes Bedrocan, the Home Office should issue an import licence. This is a narrow, tightly defined reform that will not encourage illicit use but will provide enormous help to some very poorly people. DONATE HERE.

Further Background.

Every year, thousands of medicinal cannabis users are prosecuted for possessing or growing cannabis. Often it is the only medicine that helps them with chronic pain, fibromyalgia, MS, Crohn’s disease, epilepsy, depression or many of the conditions related to aging. It is also used to mitigate the side effects of chemotherapy and HIV/Aids treatments.

In November 2014, the Liberal Democrat MP Norman Baker resigned as a government minister because of the Conservatives’ refusal even to consider drugs policy reform. In July 2014 he met with members of CLEAR and publicly called for cannabis to be legalised for medicinal use. Other ministers are more concerned with stopping people getting high (which they are going to do anyway) than in helping those with severe medical conditions. DONATE HERE.

Other Ways You Can Help
Join CLEAR at http://clearmembers-uk.org
Visit and ‘like’ our Facebook page http://www.facebook.com/ClearUK
Follow us on Twitter @CLEARUK

DONATE HERE.

Let’s Get The Dealers Off The Streets!

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Cannabis Is Not A Controlled Drug

Present policy abandons control to organised crime and street dealers.

If cannabis were properly controlled, it would be taken out of the hands of criminals. Growing, importing, distributing and retailing would become legitimate businesses, subject to proper control and regulation.

What Proper Control Would Mean

  • Regulated sales: licensed retailers, labelling of THC/CBD ratio, other ingredients, weight
  • Quality control: elimination of pesticide and fertiliser residues, bulking agents, impurities
  • Regulated commercial production, reasonable limits on domestic cultivation
  • Protecting the vulnerable: age limit, ID check, harm reduction information

We Need CLEAR Common Sense About Cannabis.

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A Safer Britain

  • Less crime of all types
  • Police can focus on violent and harmful crime
  • Lower alcohol consumption
  • Fewer road accidents and injuries/fatalities
  • Fewer children using cannabis
  • Quality controlled cannabis with no harmful adulterants
  • Fewer fires from hidden cannabis farms

A Healthier Britain

  • Lower alcohol consumption
  • Less use of dangerous/harmful drugs
  • Medicinal use: Alzheimer’s, arthritis, cancer, chronic. pain, dementia, diabetes, epilepsy, glaucoma, MS,. Parkinson’s, stroke therapy.
  • Preventative therapy against auto immune and neurodegenerative diseases
  • More funding for healthcare

Taxing The UK Cannabis Market

CLEAR’s policies are based on independent, expert research carried out by the Independent Drug Monitoring Unit in 2011.

Download Here (PDF)

How To Regulate Cannabis In Britain

CLEAR’s detailed proposals for cannabis regulation so as to minimise all health and social harms of cannabis, protect the vulnerable and allow access to medicinal cannabis

Download Here (PDF)

References:

The Effect of Medical Marijuana Laws on Crime, March 2014
Read here
How Smoking Marijuana Might Be The Best Way To Prevent Alzheimer’s Disease, January 2014
Read Here
Few Problems With Cannabis for California, October 2013
Read Here
The Impact of Marijuana Use on Glucose, Insulin, and Insulin Resistance, July 2013
Read Here
Medical Marijuana Laws, Traffic Fatalities, and Alcohol Consumption, May 2013
Read Here
Why Medical Marijuana Laws Reduce Traffic Deaths, December 2011
Read Here
What can we learn from the Dutch cannabis coffeeshop system? September 2011
Read Here
Study: Legal Medical Marijuana Doesn’t Encourage Kids to Smoke More Pot, November 2011
Read Here

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‘Taxing the UK Cannabis Market’, 2011
Read Here
A summary of the health harms of drugs. NHS, 2011.
Read Here
Emerging Clinical Applications For Cannabis & Cannabinoids. A Review of the Recent Scientific Literature 2000 – 2011, NORML, 2011.
Read Here
Bringing cannabis back into the medicine cabinet, Prof. Les Iversen, 2010.
Video here
Dutch among lowest cannabis users in Europe, November 2009
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Adulterants & Cutting Agents Found in Cannabis Resin, 2009
Read Here
Key Marijuana Compound Beats Current Alzheimer’s Drugs, August 2006
Read Here
US Patent 6630507, Cannabinoids as Antioxidants and Neuroprotectants, 2001
Read Here