Cannabis for MS:

a new policy

Jenna Mahoney

Head of PR30 November 2017

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

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

Reviewing our position

4

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.

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

Telling others…

6

Health

charities

Campaign

groups

The police

Professional bodies

Pharmaceuticalindustry

Politicians

Going live…

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

8

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

Messages

9

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.

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

10

Coverage

11

Telling people with MS

12

Response on social media

13

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…

What they said….

14

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

15

In conclusion…

16

Evidence based, involved people with MS, listened

Specific with our ask

Not greedy with media

Clear, detailed as possible information on our website

Thank you

Questions….

18

Jenna.mahoney@mssociety.org.uk

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

Making the news:

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30 November 2017

London

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