Tom Harrison Senior Policy Officer, Treatments Neurology Academy - - PowerPoint PPT Presentation

Tom Harrison Senior Policy Officer, Treatments

Neurology Academy MS Masterclass

16th MAY 2019

MS Society is a leading patient organisation, representing and supporting people with MS in the UK since 1954 Our goal is to Stop MS To do that: We fund and conduct research We provide services, including a Helpline and information centre We campaign to improve lives We give people hope Our#1 priority is to ensure that everyone with MS has access to effective treatments that stop, slow or reverse the accumulation of disability

Who are we?

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Policy

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What is a treatment?

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Not just DMTs

What is a treatment?

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I work on policy on: DMTs Drug repurposing HSCT Pain management and spasticity Smoking cessation Drug adherence and behaviour change Hidden symptoms (depression, fatigue, neuropathic pain) ...Brexit!

Ocrelizumab (Oreveus) Approved for use on the NHS in England for early primary progressive MS

News

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Welfare We’ve been campaigning to #ScrapPIP 20 metres and calling for an overhaul of disability payments

News

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A picture from our community

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“FANTASTIC. What an achievement, it goes to show when many people work in unison, the Army is stronger. Well done, and congratulations.” “I'm delighted about the result as I'm also one of those patients who is in the process of being tested to see if I can have the drug.”

• “I was diagnosed in 2012 and first enquired about ocrevus years

ago when it was the new wonder drug […] I probably have to be turned down again as I am not early enough into this horrible

• journey. I feel very aggrieved and negative about these new

drugs, raising my hopes just to be let down again”

From our campaigns mailbox

Our current strategy ends in 2019 We are working on our strategy for 2020-2025 now but are shifting towards a model that offers support in line with three core groupings that make up the MS community. Newly diagnosed Living well with MS Living with MS for a long time We will remain focused on treatments, but are likely to have a renewed focus on service variation, data and technology

Our new strategy

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Challenges ahead We haven’t stopped MS yet! There is no one set of standards for MS services to follow or to hold them accountable We know that Blueteq (and data more generally) is not used uniformly There are still people that could benefit from DMTs that are not accessing them There are serious issues surrounding capacity (workforce, MRI, monitoring) Outcomes are (often) not reflective of what people with MS want

Together we can stop MS

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My MS My Needs 2020 UKs largest survey of people with MS. Survey is open until the end of May 2019

Get involved - upcoming

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Service Audit MS Society and MS Trust are planning to conduct a service audit in

• 2020. Please help us shape what that should look like.

HSCT Lots of interest in the procedure from MS community Organising roundtable on improving infrastructure Tech and MS conference In collaboration with the Neurological Alliance we are convening a conference on the potential that advances in technology can provide people with MS. Baroness Blackwood invited to do keynote.

Thank you

Contact: tom.harrison@mssociety.org.uk

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