Blog: Campaigning

Letter calls for ocrelizumab to be made available for people with PPMS

6 February 2019

Source MS Trust: A letter signed by the MS Society, MS Trust, Shift MS and leading neurologists calls on NICE, NHS England and drug manufacturer Roche to make ocrelizumab available for people with primary progressive MS.

Back in September, NICE announced that it would not be recommending ocrelizumab as an NHS treatment for early primary progressive MS. This decision was met with anger and dismay from people with MS and MS charities, and the MS Society started a petition, calling for...

Justin Levene’s Luton airport protest is a watershed for disabled people

22 November 2018

Source The Guardian: If all disabled people posted videos of being stuck on planes and trains, airlines and rail companies would have to change.

Watching Justin Levene drag himself across the floor at Luton airport – his wheelchair had been lost in transit – might be a watershed for disabled people and our quest for better treatment in the aviation and travel industry.

For too long travel providers have had an eyes-wide-shut attitude in their duty of care to wheelchairs users...

Medical Cannabis To Be Available On Prescription ‘Within Weeks’

10 October 2018

Source Huffington Post: Medical cannabis will be available on prescription in the UK within a month, according to The Telegraph.

Former watchdog chief labels disabled benefits process a 'hostile environment'

10 October 2018

Source The Guardian: Andrew McDonald, who chaired Independent Parliamentary Standards Authority, says the system is ‘Kafka-esque’

People with primary progressive MS need ocrelizumab now

12 September 2018

Source MS Society: Ocrelizumab should be available on the NHS for everyone with primary progressive MS who could benefit. We call on NHS England, the National Institute of Health and Care Excellence (NICE) and Roche to work together to secure a deal to make that happen.

MS patients denied drug which could keep them out of wheelchair

12 September 2018

Source the Telegraph: “As doctors, we are left feeling powerless when we deliver the devastating diagnosis of PPMS to people because we know there is currently no disease-modifying treatment available to help them.

“It is even more frustrating that an effective treatment that can help slow the disease has been developed and made available across the globe yet people in England and Wales will continue to suffer disability worsening because of an archaic and inflexible medicine assessment system.”

Government to end unnecessary PIP reviews for people with most severe health conditions

19 June 2018

Source Gov.UK: People with the most severe, life-long conditions will no longer have to attend regular reviews for Personal Independence Payment (PIP) .

Having MS is enough. It shouldn't be made harder by a welfare system that doesn't make sense.

19 June 2018

Source MS Society: Welfare support is vital for many people with MS. It helps us manage the extra costs of the condition, stay in work for longer and participate fully in society.

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