Medical hashish advocacy group, the United Sufferers Alliance, look to the way forward for medical hashish within the UK.
It’s been over a yr because the Authorities took the welcome step of recognising the medicinal worth of hashish and made it obtainable on prescription.
Sadly, although, this has not translated to actual entry for sufferers who’re determined for his or her medication. As the most important affected person group preventing for entry to medical hashish, we at United Sufferers Alliance (UPA) should resolve how finest to reply in one of the best pursuits of our members.
A social outrage
I sat throughout from a household buddy at a Christmas social gathering final weekend. She has developed Parkinson’s illness over the previous few years. She is determined for assist, she is struggling and her prescribed drugs aren’t working. With the assist of her husband, she is able to strive an alternate medicine that has helped others in her state of affairs – medical hashish.
I needed to clarify to her that it was nonetheless in opposition to the regulation for her to discover taking this doubtlessly life-changing medication if she couldn’t afford a personal prescription.
It’s fully unjust that the overwhelming majority of sufferers are nonetheless criminalised for accessing their medication, and it’s a social outrage that sufferers like my household buddy don’t have the chance to discover all medicines that might assist them. The change in regulation our legislators lastly acceded to has not yielded entry for the overwhelming majority of sufferers.
It has been urged there are 1.four million sufferers within the UK are at the moment utilizing hashish to deal with continual well being circumstances. UPA estimates that lower than 100 sufferers at the moment maintain authorized prescriptions. Meaning solely 0.007% of sufferers within the UK are related with a drugs that’s in some instances lifesaving – that is similar to the variety of individuals hit by lightning within the UK because the drug was rescheduled.
Inside that small group of 100, sufferers inform us how they’ve cancelled their prescriptions as provide has been unreliable or as a result of the restricted product vary is ineffective for his or her situation.
Many sufferers are prohibited from being a part of this group as personal prescriptions can price 1000’s of kilos a month – rather more than sourcing hashish from the black market.
United Sufferers Alliance response
United Sufferers Alliance campaigns for a society the place all UK sufferers have equal entry to authorized medical hashish.
We celebrated the change in coverage final yr, however it rapidly turned obvious that we nonetheless had an infinite battle on our palms. How may we handle the momentous process of connecting 1,399,900 sufferers with their medication? United Sufferers Alliance received skilled.
This yr, United Sufferers Alliance analysed the obstacles to entry, and have focussed on growing a robust core group product of sufferers and professionals, capable of assist high-profile initiatives in 2020.
UPA are partnering with Drug Science on Mission TWENTY21, aiming at offering a stable proof base to encourage NICE to advocate additional medical hashish merchandise on the NHS.
We’ll quickly be finishing up our Affected person First marketing campaign, tackling the twin problems with stigma and inspiring the nascent business to contemplate and reply to affected person wants of their enterprise practices. In 2020, we will likely be reconnecting with our sufferers throughout the UK and pushing ahead on all fronts, educating and connecting with stakeholders as we go.
United Sufferers Alliance is delighted to say that we’ve strengthened the United Sufferers Alliance Committee supporting these efforts, which now consists of:
• Leila Simpson, Chair and Affected person First marketing campaign Lead
• Abby Hughes, Outreach Lead and Mission Twenty21 Affected person Entry Lead
• Clark French, Founder
• Lorna Bland, Governance Lead
• Joe Thompson, Finance Lead
• Lucy Stafford, Ambassador Lead
• Sarah Foxall, Comms Lead
To ensure that UPA to characterize 1.four million sufferers at the moment taking medical hashish for recognized medical circumstances, we depend on the assist of our fantastic volunteer groups, most of whom are sufferers themselves. We’re fully not for revenue and led by our ‘purple ethics’ of compassion, independence, inclusion, collaboration and integrity.
We additionally depend on the kindness of those that donate to us. The work we do is completely depending on donations from people and organisations who align with our goals. We’re not nicely funded and it’s been tough to develop UPA on the promise of a shoestring, so in case you’d prefer to contribute to our work please go to www.upalliance.org/donate.
A hopeful 2020
It has been a tricky yr for the United Sufferers Alliance.
We’re transitioning from a completely grassroots marketing campaign group, doing our greatest on tiny assets, to an organisation poised to take our rightful place on the centre of the rising medical hashish furore within the UK, with plans for focused and efficient initiatives to get medical hashish into the palms of sufferers as quickly as we probably can.
It has taken many private sacrifices by sufferers who passionately imagine in our goals to get us right here, however we at the moment are a future the place the affected person voice is just not misplaced, the place we’re capable of work with stakeholders to advance entry.