Friday, 9 February 2018

Guest post: The argument for legalising cannabis for medicinal use

Note: This is a post which talks about the effects of PPMS in a way that some readers may find upsetting.

We are a regular family who has been virtually decimated by MS.


My wife (Vicky) was a very respected primary teacher, teaching in a challenging school in Walsall when she was diagnosed with Primary Progressive MS in her mid-30s, a little over 10yrs ago.

We have two daughters: Sophie is studying for a nursing degree in children's nursing, and Megan is studying on a BTEC course with a view to a career in the police force.


Within 3-4 yrs of diagnosis, Vicky was forced to give up the career she loved despite every effort made by all parties, measures which included Vicky being lifted from a taxi (access to work scheme) onto her mobility scooter to continue her work.

Since the early days of diagnosis, Vicky has suffered daily with severe stabbing nerve pain in her left shoulder. She has tried every drug there is acupuncture, electro-acupuncture, nerve injections, chili patches and so on and so on; literally, everything the NHS and private clinics have to offer.

Fast forward to where cannabis comes in. Vicky has very little function, is doubly incontinent and has carers come in whilst I work Monday, Tuesday, and Wednesday. I take over at all other times.

It is important to bring the carers into the story because this is where our first brush with the law comes in regarding cannabis.

I had been trying to grow some cannabis in a spare upstairs bedroom, not very successfully I might add.

One of the carers or care agency reported a smell of cannabis coming from upstairs. This was frustrating on two points: one because upstairs is out of bounds, as we live on the ground floor adapted for Vicky. The second is there would have been very little smell due to very little growth and was more than likely found by snooping around. I said two points, in actual fact, it's three: the carers see Vicky cry in pain on a daily basis.

The resulting action was a visit from the local police and a stern warning with the instruction not to do it again. The WPC was quite understanding and could see what it was being used for, but said the police had to act as the call had come in from an agency with the additional fact of a minor living in the house.

So that was our first brush with being labeled criminals and our chances of experimenting with cannabis as a pain reliever gone for a while.


The second time (about 7 months after the first) was also as a result of the care agency reporting cannabis to the police, again to the backdrop of Vicky crying in pain.

I had managed to find a more reliable source of cannabis than trying to grow my own. I made the cannabis into butter and was putting this into a healthy smoothie on a daily basis; having been in a precision engineering role since leaving school this process was also carried out to precision.

Absolute success, I would come home from work to find a smiling Vicky who had been pain-free. Sadly she would still have the same stabbing pain at night and this is something we were unable to get on top of as our experimenting was cut short by the involvement of the police once again.


The second reporting also resulted in another reluctant visit from the police but had the extra worry of a safeguarding visit from Social Services for Vicky, followed by an even more worrying visit regarding the safeguarding of Megan.

As the law stands, if I get caught again I run the risk of further action being taken and risk either Vicky or Megan being taken into care. This would also jeopardise Megan's chances of joining the police and could ruin my daughter’s dream.

So after 10 yrs of daily pain, it was being relieved a by a small amount of cannabis in a smoothie. Not enough to be stoned, nor in my opinion enough to suspect, other than what must have been a slight smell in the smoothie. Vicky is now back to crying in pain on a daily basis.

Vicky is now PEG fed, nil-by-mouth and is confined to bed suffering from a severe pressure sore and awaiting a bed at the local hospice to try again to address pain.

At a little over 5st and suffering severe pain and many other complications due to PPMS, I ask anyone why they would want to deny a responsible adult access to a plant that was clearly helping?

The only hope we have is for the Elizabeth Brice Bill to be passed which has its second reading on 23rd February. Our MP has campaigned for this on our behalf.

I would like to hear from anyone who uses cannabis to ease MS symptoms.


by Andy Clarke

51 comments:

  1. An excellent, troubling, heartbreaking and thought-provoking piece Andy, thank you. The law is an ass when confronted with situations like this.

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    Replies
    1. Also, who would have guessed that the previously prohibitionist USA (and many other countries) would be light years ahead of us on this issue?

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    2. In addition to the symptomatic aspect there are clear neuroprotective benefits found in virtually all experimental studies. Even in the subgroup of people with MS that progressed.

      This avenue has been thrown away in the UK from a pharmaceutical prospective. Sativex is too expensive for NHS England so the only way this is going to be brought back to the table is through medical use intitiatives, such as this.

      I have not been a big fan of the legalisation approach believing that science can find an answer that extracts the means to give benefit to dissociate medical use away from the recreational use.

      However progress is too slow, the solutions too expensive and with the human dimension such as yours, it suggests that common sense should prevail and people should not be criminalised for wanting to help their loved ones.

      Best wishes

      To you and your family
      Regards ..as always

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    3. PS Happy to testify (Free of charge) as expert witness on the potential medical benefits if you ever need it.

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  2. Hi Andy
    Your story is extremely disturbing. Pain is the most debilitating and cruel symptom, so sorry. Particularly horrified by the actions of Vicky's 'carers' as you'd obviously found a way to help.

    I will contact my MP and ask him to support the bill on 23 February. I'm sure lots of people will do the same once they hear Vicky's story.

    Very best wishes to you all, Judy

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    Replies
    1. I've emailed my MP to support this bill too.

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    2. As have I, Andy, and my heart goes out to you, it really does. Truly, the law is an ass.

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  3. Andy, as my home town struggles with giving approval for a local medical MJ dispensary would you mind if I quote your post in an op-ed for support of why they should? Thank you, Rollo

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  4. . . .no words. Can't England get this woman HSCT and bales of marijuana?

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  5. I wish I still had an MP in England (Australia now)
    I will email this to friends and relatives in England.
    Dave

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  6. I have tried nabilone, another licensed CB1 agonist, in similar situations with good effect. But I am getting push back from the trust and CCGs; it is relatively expensive and off-label. What's the alternative; street cannabis?

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    Replies
    1. I’m sure you are well aware, the manufacturer GW Pharmaceuticals is located in Cambridge. Unfortunately marijuana is till a clasIII drug here in the states, on par with heroine and lsd. Therefore research is very difficult.:-(

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    2. It's a lot easier in the US as there is an Institute for research on it (NIDA), the US government even grow it..in North Carolina. I hear its full of stems & seeds:-(

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    3. It is not considered cost-effective in England, if you are in Wales its a different case...bonkers.

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  7. Thanks for the feedback and it's much appreciated and feel free to share wherever you feel it may help.
    Just a quick update, Vicky went into the hospice in the week and I had a good chat with the lead Dr yesterday.
    Interestingly Gavin, nabilone is on the list of drugs to try but only if Vicky's GP will play ball as it's not worh starting it, only to have to stop.
    Other things on the list is a antidepressant, not that Vicky is depressed it's to help with any anxiety and maybe sleep. Other things such as massage, hypnotherapy, reiki, so the hospice should be praised for taking a holistic approach.
    Just to put the pain in perspective, when it's up to 10 (max) Vicky describes it as more painful than childbirth and one last story, shortly after dx in a attempt not to give in to MS we were out cycling which was fine whilst Vicky was moving but as soon as she stopped she fell over. Well after falling two or three times and hurting her wrist we called it a day and went home.
    After six hours or so Vicky said her wrist was very painful and she wanted to go to A&E, where they found two fractures, so when you see someone crying in pain you know it's painful.

    Thanks again for your thoughts and please do contact you MPs and ask for their support.

    Regards as always.

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  8. Replies
    1. Dear Andy,

      I have emailed my MP and also signed the petition for the Elizabeth Brice Bill on Change.org

      Vicky has my very best wishes for finding benefit in the holistic approach from the hospice.
      I find that pain is my most persistent and debilitating symptom, though I do not suffer anything like to the extent Vicky does, I do find that a range of remedial measures assist.

      I'd like to mention one other you haven't highlighted that may benefit others as it does me: Mindfulness meditation. I found most I use on YouTube and there's one on pain I like:
      Mindful peace guided Mindfulness meditation on coping with pain.

      Btw Prof G I've taken a listen to a couple of healing light guided imagery via YouTube since you highlighted research suggesting benefits to PwMS and I'd have to assert that they sounded near identical to Mindfulness meditations. Guess, it makes sense that anyone interested does some searching and finds the ones that work for them. I'm fond of stressing it's in the voice: you know damn quickly whether you like the voice or not! I felt like I'd trawled through hundreds before finding the couple I can relax with and actively listen to!

      Hope it's good news from parliament at the end of the month!

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    2. Hi Fi,
      Thanks for your feedback, this is one area I would like to explore more and maybe the hospice can convince Vicky of it's merits.
      I've tried playing Vicky John Kabat-Zinn via you tube a few times, but I don't think she fully embraces it. Maybe if Vicky could have some healthy green smoothie ;-) whilst watching I'm sure she would relax more, but I do appreciate trying to take your mind somewhere else or free it up of anything must be so difficult when you're in so much pain.
      I will endeavour to try again, if you have any links that would be helpful. Thanks.

      Regards as always.

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    3. Hi Andy,

      I tried to reply last night, but think I messed up the 'publish'

      All the Mindfulness meditations l use are easily accessed on You Tube.
      My favourite by miles is the one I've mentioned: Mindful Peace. You will see there are 21 videos, and I listen to most of them.
      I also like Guided Meditation Before Sleep: Let go of the day, and Short Guided Mindfulness Meditation by Fiona Gallacher

      I want to add that I found it easy to set yourself up to fail by expecting to actively listen to every word and get through the whole thing. Also there are times when it just don't happen! I've given up sometimes with frustration and tears. Since relaxing my atttiude and thinking that if I hear and benefit from just two mins as opposed to the full twenty, it's worth it!

      Most of the time though I do find doing a daily meditation provides me with some calming respite and that is what I say in recommending it to all my family and friends. Most importantly I think it's helps me with maintaining a positive frame of mind.

      I do appreciate the huge differences in my experience of MS and Vicky's and I want to reiterate my hope that she benefits from all your endeavours and the hospice input.
      Fi

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  9. My heart goes out to you and your wife and family.
    The illegal nature of a medicinal plant is puzzling to me.
    Pain that’s so bad it squeezes tears out. A Silent Scream.
    I knew that MonSter. And I know CBD And THC Help.
    Thanks for sharing your story.

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  10. Andy, my thoughts go out to your family. My RRMS has had a big impact on my family but PPMS is a wretched version / stage of this disease. I support any intervention to reduce pain. However I also question why research and all the big names in MS haven't made a dent with regard to progressive disease. A young woman in her prime should not have to experience the suffering your wife has experienced. The One Show last week had a story about the DJ / presenter Iain Lee. His mother has advanced MS and has been in a care home for 12 years (she is in her mid60s). I watched uncomfortably with my teenage children hoping none would ask whether that is my future. I'm starting to feel pretty bitter about MS research (all the research centres). In the year 2018 we should not be in a position where a partner of someone with MS is trying to grow mj in their house to relieve pain. Where are the neuroprotective and neurorestoratives MS research world? When you all turn up in your thousands at ECTRIMS, ACTRIMS etc. remember cases such as Vicky and Iain Lee's mother before you applaud the great research and accept the prizes for your brilliant work. Until cases such as these are ended for good, your achievements are limited.

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  11. Heart-rending and outrageous
    What sort of automatons are these 'carers'?

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  12. In my country parliament is discussing this issue

    Thanks for your story

    Hopping for the best for your family

    Luis



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  13. https://medicalmarijuana.procon.org/view.resource.php?resourceID=000881
    Even here in the U.S. we are coming to our senses regarding the benefits of medicinal cannabis. Recreational use still has the taboo of being a gateway drug, curiously alcohol consumption is seen in a different light. I guess people pick and choose what is socially acceptable irregardless of the
    scientific evidence. Even the most conservative “red” states will probably legalize it with time when the data shows no ill effect to society.

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    Replies
    1. Hopefully Steve, it won't be long before the UK comes to it's senses.
      Regards as always.

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  14. I'm so sorry to hear of your wife's pain and your struggles with our currently incompassionate legal system on this issue. I will also sign the petition. Have u tried cbd oil? I have recently started using an oil from the cbd brothers which I find effective for mild pain and it helps with sleep. They are a great company who send out free samples and there is a helpful group on Facebook 'cbd users uk/eu'. I currently take the red oil which is indica based and others on there report it being very transformative for their pain. This oil is legal because the thc content is so low. Kind wishes x

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    Replies
    1. Hi Em F, Vicky has tried CBD oil from Andrew at CBD Brothers and some from Bluebird Botanicals some time back, thanks for the reminder. Having a look at their website now, it looks like they've moved on a lot, might be worth another go. Thank you.
      Regards as always.

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    2. With reference to CBD oil, Andy, given there is a negligible THC content, this probably will not be sufficient for your purposes but who knows, maybe worth a go.

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  15. Nz hasn't decriminalized mj for anyone. Kids suffering horrible 'fits' anyone with nerve painetc can apply for sativex spray which cost alot per month! All us sick people are obviously just pot heads. Yet alcohol is legal? All about the money honey...Sadly.

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  16. So here's the latest update re Nabilone, it won't even be tried as continuation once out of the hospice would be a problem, ketamine ? don't even ask !!!!!

    What on earth do we have to do ???

    I could list all the drugs Vicky has tried for nerve pain if anyone would have the time to read them all. Lets just broaden it out into topics and you can guess how many under each one. Anti epileptic , anticonvulsants, anti depressants,skin patches, morphine, tramadol, fentanyl and absolutely 95% of what's on the Nice Guideline list (see link).

    Alternate therapies ? just name it, and the new one on the block is mindfulness, which will hopefully continue upon return from the hospice, which by the phone call I've received this morning will be sooner rather than later.

    So there you have it, excuse my rantings I'm feeling a bit nauseas at going round in circles.

    So out of everything we've tried (inc CBD oil, which I agree MD2 probably doesn't have enough THC), only 'street cannabis' relieves the pain by a substantial degree.

    Surely given what Vicky has to deal she should be allowed to use cannabis ? and forgive me if I'm repeating myself, but of all the things she has to deal with ( and I've only listed a few) pain is the one thing above all else she would say tops the list by a Country mile of the things she would love to have respite from.

    How much can one person's strength take, the mind the body, the soul, when living in this much pain? I could show you a picture of her pressure sore which would turn most people's stomach and leave them wincing in pain just looking at it, but even that doesn't cause her much of a problem, it pales against her nerve pain.

    Surely some whizz kid lawyer could test the 'Human Rights Act'? or get it amended so responsible adults need not live in pain.

    Rant over, but this leaves me no alternative but to break the law, I just need to be creative now Vicky is 'nil by mouth'

    Thanks for your support and giving me a platform to vent my spleen and I do hope you'll contact your MP and ask them to support the 'Elizabeth Brice Bill'

    https://www.nice.org.uk/guidance/cg173/evidence/neuropathic-pain-pharmacological-management-full-guideline-191621341

    https://hansard.parliament.uk/Commons/2017-10-10/debates/DD48FD3C-C652-4ABB-BE9E-ADDECA878E27/LegalisationOfCannabis(MedicinalPurposes)


    Regards as always.

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    Replies
    1. Hi Andy,
      Very sorry to hear no go with nabilone. Grrr :( unbearably frustrating. Do you know how high up matter has gone? Vicky's case is one of exceptional need. There is probably a senior pharmacist adviser in your CCG to look at whether spend can be justified. They weigh up things like whether drug cost would allow Vicky to stay at home rather than be admitted to hospital. If all this fails could your GP prescribe privately? It's about £200 for 10 days, you could fundraise....
      Have e-mailed my MP, nothing heard yet will chase.
      Have been thinking a lot about Vicky, very sorry to hear your latest news.
      Very best wishes to you all. Judy / AM

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  17. Hi Andy,

    Had a letter from my MP today and thought I'd share with you - small crumb of good news, I guess.
    Think I'll start with what I said in my email to her:
    I asked her to consider voting in favour of the EBrice Bill.
    Told her I'm a woman with MS with no membership or affiliation to any bodies, organisations or companies.
    Went on to say that all key arguments in favour are easily accessed, so I preferred to highlight relevant key facts:
    'If I ask anyone what is the main cause of disability in young adults in Europe and the UK they correctly identify traumatic injury such as car accidents.
    Ask then what is the second most common cause they never think of Multiple Sclerosis.
    Nor will they be able to tell you it is the most common neurological condition and that around one hundred people are diagnosed with it, here in the UK, every week.
    One aspect of having MS they can mention is the risk of being in a wheelchair. The impact on cognition - it is a rare form of dementia - and on all other elements of bodily functioning, including sight, swallowing, bladder and bowel is not known about.
    Finally, pain, both normal and neuropathic, never occurs to anyone and yet for many this is one of the biggest challenges of living with MS.
    As someone who works hard to maintain and improve both her physical and cognitive functioning, I find that pain is my most persistent and debilitating symptom.
    'To enhance the means for pain management for significant numbers within our society please consider my request.'

    Whilst she doesn't mention the Bill in her reply she does say:
    'I have written to the minister responsible for drugs policy, Victoria Atkins MP, at the Home Office, about this matter and I will let you know once I've received a full response.'

    Hope you hear back from others who've received a reply from their MP and of course I've so got my fingers crossed for the second reading this week!
    Best wishes,
    Fi

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  18. A little clip from the House of Commons, lets hope we're moving in a sensible direction....https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.youtube.com%2Fattribution_link%3Fa%3DuFoSTc6mWZw%26u%3D%252Fwatch%253Fv%253DU2NYtg_OYCQ%2526feature%253Dshare&h=ATP157NcKktQsoRd96tGkP6gsTmJBpH5CNmU1ovQhSO26uy0RXCxsLFoR7G5kzq4B6MKVhIG3xLfdb7r0xJrDBBRR02_v34kjVExQ9yF3P5jjctXbDV7Z2B-pnqHKgQ9i2saVjL7OJElP-0EbxR05cjWkiPH-PffpRTMrWTg7hM0fOosjXg8Fof5Awum7whav_j9LQ9F78Nf5At_SaAbIJ2EEzpo5sBsLwek7Xy3cNc

    Regards as always.

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  19. I'll try again
    http://parliamentlive.tv/event/index/94cdc6e8-d337-41d8-a354-63d1ae4c8b58?in=15%3A51%3A01

    Regards as always.

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    Replies
    1. What an obtuse fool that government minister is.

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  20. Aricle on this subject in today's Guardian. Lobby your MP for their support.
    https://www.theguardian.com/commentisfree/2018/feb/23/criminalise-cannabis-pain-bill-reform

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  21. Filibustered. Clearly the eider duck is more important than pwMS.
    ****ing disgraceful.

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    Replies
    1. Sandy Martin, MP for Ipswich was the chief culprit.
      Watch here from 12.45 onwards if you have your blood pressure medication handy.
      http://parliamentlive.tv/Event/Index/1ce6883b-4481-4adb-87d2-91ead4e04bcc

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    2. Incidents like this really do shake your faith in our system of parliamentary democracy.

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    3. Gutted! Hard when hopes are raised to be thwarted at this stage, in this way!

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    4. Terrible waste of time, Sandy Martin waste of space, 6 July

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    5. Private members' bills rarely make it to statute, it's just a way of the government gauging public interest and reaction prior to possibly adopting the bill into their own legislative agenda. And they are regularly filibustered. Most MPs don't even bother staying for the debate.

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    6. Disappointing, but not unexpected, we'll see what July brings.

      Regards as always.

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    7. Hi Andy, the optimist in me hopes that maybe the government might make be making moves on this, then the cynic kicks in...
      Fingers crossed.

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    8. Maybe there's a hint of movement.
      https://www.theguardian.com/uk-news/2018/mar/01/alfie-dingley-home-office-considers-medical-cannabis-trial-to-help-boy-with-epilepsy

      Delete

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