Jenna Mahoney, head of PR, MS Society Visit the CharityComms website to view slides from past events, see what events we have coming up and to check out what else we do: www.charitycomms.org.uk

1. Cannabis for MS:
a new policy
Jenna Mahoney
Head of PR
30 November 2017

2. There are 100,000 people in the UK living with MS
Affects the central nervous system – that’s the brain and the spine
Symptoms include problems with mobility and balance, cognition,
severe fatigue, speech, bladder and bowel control
People typically start experiencing symptoms in their 20s and 30s
Different types of MS – relapsing, and progressive
13 different ‘disease modifying therapies’ available on the NHS for
people with relapsing forms, nothing yet on the NHS for
progressive (although the first drug has just been licensed!)
No cure, no definite cause but likely to be a combination of
genetics and environmental factors (smoking, exposure to vitamin
D)
About MS
2

3. Licensed drug ‘Sativex’ not available on the NHS (2% accessing it)
Evidence shows it can help with pain and muscle spasms
People with MS already using cannabis:
– 22% of people with MS we surveyed had used cannabis to help
with symptoms
– 40% of them did so in absence of other medicines
– 48% of people not used cannabis said they’d considered it
– 72% of MS community thought it should be legalised for MS
Previous position: ‘cannabis is illegal and people should
seek out Sativex’.
Why cannabis for MS?
3

4. Reviewing our position
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Steps to review our position:
1. Survey of 4000 people with MS to understand their attitudes to,
and experiences with cannabis and Sativex
2. Reviewed the clinical evidence for all forms of cannabinoids in
treating MS symptoms
3. Sought a consensus from our medical advisors (5 top UK
neurologists) on the evidence to whether cannabis “on the
balance of probability” could improve the quality of life for people
with MS
4. Held four focus groups across the UK to ask people with MS how
our position should reflect the evidence we gathered.

5. New position
5
Cannabis for medicinal purposes could improve the quality of life
for some people with MS experiencing pain and muscle spasms
The Government should establish a system in which people can
access cannabis for MS symptoms
We are supportive of further research into cannabis use for MS
People need to access objective information on cannabis and be
aware of the risks of illegal cannabis

6. Telling others…
6
Health
charities
Campaign
groups
The police
Professional
bodies
Pharmaceutical
industry
Politicians

7. Going live…

8. Going live….
Lots of risks involved
First UK mainstream charity
to support medicinal
cannabis
Position was specific and
still abit complicated
People with MS as ‘stoners’
Cannabis farms, gateway
drugs and addiction
Careful messaging required
Developed messaging
internally – lots of
collaboration
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Message testing
Important to involve people
with MS
Used agency Batchelor
Clark
10 face to face interviews
in Eastbourne and
Gateshead, older people
10 phone interviews with
younger people with MS,
UK wide
£5k total cost, inc. travel

9. Messages
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Dealing with pain and muscle spasms when you have MS can be relentless and
exhausting and make it impossible to manage daily life.
There are NHS treatments for pain and muscle spasms, but they don’t work
for everyone. And there is Sativex, a cannabis spray, which you can’t get on
the NHS – this urgently needs to change because most people can’t afford to
buy it privately.
Evidence shows that cannabis for medicinal use can work for some people to
relieve pain and muscle spasms in MS
Countries including Canada and Germany have already legalised cannabis for
medicinal use. These countries are offering cannabis on prescription so people
can be more confident about quality, safety and dose.
72% of people with MS feel that cannabis should be legalised for medicinal
purposes; we think the Government should make it available to people who
could benefit.

10. A break from the norm…
Media tactics
For the first time, we didn’t want lots of coverage…worked hard
to prepare people to say ‘no’
Took the story to a trusted journalist who we knew would do a
good job – Denis Campbell at the Guardian
‘Controlled’ the coverage
Agreed to deal with other requests on a case by case basis –
reactive only
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11. Coverage
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12. Telling people with MS
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13. Response on social media
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Tweet with announcement was the most re-tweeted in the last
year (250 RT and 290 Likes)
Facebook: 130,000 people reached, more than 120 comments,
over 4,400 likes and 1,100 shares.
Data for 4 month twitter period…

14. What they said….
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15. Build our
relationships
with key
partners
Keep a
watching brief
of the sector
and arising
issues
Continue to
identify
opportunities
to raise our
position
What happens now
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16. In conclusion…
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Evidence based, involved people with MS, listened
Specific with our ask
Not greedy with media
Clear, detailed as possible information on our website

17. Thank you

18. Questions….
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Jenna.mahoney@mssociety.org.uk

19. Visit the CharityComms website
to view slides from past events,
see what events we have
coming up and to check out
what else we do:
www.charitycomms.org.uk

20. Making the news:
generating positive PR
for your charity
Supported by
30 November 2017
London
#charityPR