Lords conversation on Cannabis prescr... - Fibromyalgia Acti...

Fibromyalgia Action UK

50,548 members61,326 posts

Lords conversation on Cannabis prescription

desquinn
desquinnAdministrator

JUST Posted this to facebook:

With the recent announcement of cannabis prescription protocols from the government there will be more conversations happening within parliaments about the future direction of policy. We will continue to share on these discussions when they happen and any research.

However, we will remove any comments that promote or advertise websites or promote illegal consumption. That said, here is a discussion from the House of Lords talking about the new direction. There is concern about the cost pressure on the NHS from chronic pain referrals on relation to this but on the plus side there is talk of future research.

theyworkforyou.com/lords/?i...

31 Replies

Can I share the link to HoL on Pain Concern site please?

x

desquinn
desquinnAdministrator in reply to Bananas5

Go for it

Good News hopefully and with the possibility of this helping to avoid Opioid crisis plus reduce NHS prescription costs for them & us they should really think hard about using utilising it. I can only see positives for use in chronic pain :)

desquinn
desquinnAdministrator in reply to Mdaisy

but their starting point is the lack of clinical trials evidence supporting its use in chronic pain. We may hear positive outcomes from people online but this may not be statistically significant.

For example we have done a survey on something with a couple of hundred responses and looking at the comments we could have formed an opinion on the response. The question was along the lines of do you like something. We got about 95% saying yes they liked it but out of the comments that were left about 99% of them were expressing their severe displeasure at the question.

So noise does not equal statistic significance and non responders that do not comment are often not represented in the conversation. We also have to look out for confirmation bias and be careful of wanting a solution too much.

Mdaisy
Mdaisy in reply to desquinn

I understand we need research :) My opinion is not based on the stories we hear but just relaying my personal opinion and experience as it helped my chronic pain :)

desquinn
desquinnAdministrator in reply to Mdaisy

I get that and appreciate it but the clamour from people to prescribe it on the NHS is not the same as someone making a personal decision and only affecting their own life. I know you know this Mdaisy but doctors are liable for their decisions as are the NHS so they need to have went through procedures to quantify any risk.

Mdaisy
Mdaisy in reply to desquinn

Yes and hopefully the decision will go in the right direction as they find out all the evidence backs it up.

Thank you for posting this Des. I think we are all going to need to have patience, while the required research is done, however frustrating this is, it is a massive step in the right direction!

There is an interesting graph in this 2016 research article, comparing the effectiveness of fibro meds to cannabis (not CBD). Fingers crossed that other researchers will investigate further.

liebertpub.com/doi/10.1089/...

desquinn
desquinnAdministrator in reply to Roseyinthegarden

it is interesting but 9 patients with 4 leaving the study and no placebo control means it would not be that useful. We need trials with at least 50 people but ideally more and it to be randomised, double blind and ethically sound. Then replicated by another unconnected group :(

I with agree you Des and like you, have a strong desire for further research. As someone who suddenly developed severe side effects from Pregabalin and other fibro meds, after 3 years of taking them, I’ve been fortunate to have good results from CBD, otherwise I’d be in dire straits.

I get on very well with my GP, but being told to go away wean myself off my meds, while being told there was nothing more he could do for my fibro, wasn’t a comfortable place to be.

I’ve spent a small fortune trying different types of CBD and have thankfully, I’ve been fortunate to find an effective product that works for me.

I do believe that medical cannabis will eventually become available for chronic pain, based on all I’ve read and the interviews with experts across the world that I’ve listened to, but not before rigorous research has been undertaken and hopefully, effectiveness established.

This is all going to take time, so we are probably going to have to wait a few years. The government has already said that anecdotal experiences are not enough. We might be lucky that research currently being undertaken may convince them, we just don’t know.

My GP is saving over 2K a year, now I’m off my fibro meds, while my full entourage CBD will cost me £377 this year. It is a significant amount for us, so yes, it would be lovely to have it funded by the NHS, but I can see that I will be I will be buying CBD for the for seeable future. This providing big pharma don’t insist on making it illegal for us to purchase.

Meanwhile, recent work on the placebo effect, has demonstrated that the placebo was more effective than conventional painkillers, so given that full entourage CBD works well for me, regardless of the research, I’ll continue taking it for as long as I can.

This is why I’m taking a laid-back approach to current developments and will look forward to seeing the results of the rigourous research in the fullness of time.

Rosey

Good point on the savings to the NHS as I mentioned in my comment it is a substantial saving if you consider the numbers it might help. This could be ploughed back into treatments desperately need on the NHS, social care especially for residential/nursing care for the elderly as we run out of money to care for people as we are all living longer. I don't agree with the tax that was proposed for elderly people & their homes as I feel children should get inheritance but something needs to be done as we are nearly at crisis point!

desquinn
desquinnAdministrator in reply to Mdaisy

regarding cost savings, if the comment by Ajay575 is right then this may be against 57 referrals to pain consultants for every one possible helped person.

Ajay575
Ajay575 in reply to desquinn

Think it was that .it was a top specialist and sure it was referrals as you said

desquinn
desquinnAdministrator in reply to Ajay575

it would explain why the pain specialists do not want to be telling 57 people no this will not apply to you and it be £XXX off their budget and time for every one they cannot help.

Ajay575
Ajay575 in reply to Mdaisy

There was 2 experts on gmtv said it only helps 1 /58 chronic pain and they have to see all them for 1 patient to benefit and he was on the other side against it there was other experts on the other side for it as well

Hidden
Hidden

I think it’s sad doctors would consider changing or stopping meds due to cost! I pay for my prescriptions and pay tax so technically they shouldn’t be so worried about cost we pay for the drugs we take

desquinn
desquinnAdministrator in reply to Hidden

doctors are making life and death choices on the basis of available capacity every day. sometimes this is people, sometimes this is an MRI being available, or amount of BM sticks to be used per week,

Basically money going into NHS is not able to cope with everybody's needs nevermind their wants!!!! So I paid my stamps so I should get seen is no longer appropriate.

Hidden
Hidden in reply to desquinn

Didn’t the recent budget promise more funding to the NHS? but the cost of prescriptions constantly rises every year, it’s expensive to be unwell

Bananas5
Bananas5 in reply to Hidden

Free in Scotland for everyone

Bananas5
Bananas5 in reply to desquinn

Sadly Des our NHS ( sorry England's) is fast being privatised. The US insurance giants ,who have been waiting in the wings for several decades, are now ready to sell their private insurance. This is well known among campaigners although Joe Public can't see it.

x

Bananas5
Bananas5 in reply to Hidden

The NI pot has long gone.

Hidden
Hidden in reply to Bananas5

Yeah the pot us working people pay into 😡

Bananas5
Bananas5 in reply to Hidden

And those who don't work but claim certain benefits too. But it doesn't exist as intended any more

Hidden
Hidden in reply to Bananas5

Yeah you are probably right, I don’t claim anything because I am not entitled coz I work but it seems to me the entire countries finances are up the shoot

Bananas5
Bananas5 in reply to Hidden

You can work and still claim some benefits. PIP for example.

Hidden
Hidden in reply to Bananas5

i have no idea what PIP is but isn’t there a minimum threshold per household or something? I have very little idea tbh

Hazel_Angelstar
Hazel_AngelstarAdministrator in reply to Hidden

Pip is not means tested so your household income doesn't matter (you could be a millionaire and claim pip!).... It is based on how your illness /disability affects you on a day to day basis x

Hidden
Hidden in reply to Hazel_Angelstar

Ah ok thanks, well I go to work full time so I imagine I wouldn’t be given anything but I hope those who can’t work get what they need

Bananas5
Bananas5 in reply to Hidden

PIP can be paid regardless of your income, savings or National Insurance contribution record and is a tax free benefit. You can get PIP even if you are working or studying.

Hidden
Hidden in reply to Bananas5

That’s really interesting I have not looked into it as I thought I would just be written off!

Mydexter
Mydexter in reply to Hidden

I'd have thought the same , when I was working full time, I'm retired now, and have never claimed anything, I would have thought I wouldn't be eligible if I was well enough to work.

You may also like...