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important victory

The Association’s Chief Executive Sally Light said: “This is a victory for the hundreds of campaigners across the country who have worked tirelessly alongside the MND Association for three years, raising awareness of the flaws in the current system and urging the Government to change the rules.

“The six-month rule has always been a barrier for people living with complex and unpredictable terminal illnesses such as MND. It remains the case that providing an accurate prognosis for someone living with MND is near impossible. On balance we believe that if the rules change as proposed, the vast majority of people with MND should be able to access the Special Rules.

“Now the recommendations must be implemented quickly to ensure no more people, already facing the most difficult time of their life, have to suffer the indignity of a long drawn-out process to claim the support they not only desperately need, but are entitled to.”

The next step will be for the legislation to be passed by Parliament. Until then, the Association will continue to press the Government to ensure reform of the system is brought in as quickly as possible.

“This is a victory for the hundreds of campaigners across the country who have worked tirelessly alongside the MND Association for three years, raising awareness of the flaws in the current system and urging the Government to change the rules.”

For more information about the Scrap 6 Months campaign visit www. mndassociation.org/scrap6months

Scrap 6 Months: The story so far

• April 2018: Scotland votes to scrap the six-month rule • June 2018: The MND Association launches the Scrap 6 Months campaign across the rest of the UK • July 2018: Madeleine Moon, a former MP who is personally affected by MND, to raises the issue in Parliament • September 2018: Marie Curie joins the campaign • November 2018: 52 MPs show their support by attending a parliamentary drop-in hosted by us and Marie Curie • January 2019: Daily Express joins the fight with a front-page story, and we launch a petition • June 2019: 31 clinicians publicly support the campaign in a letter to The Telegraph • July 11, 2019: Success! The Government launches a review into the benefits system for terminally ill people • August 7, 2019: Petition, signed by 55,000 supporters, is delivered to Downing

Street • December 2019: More than 800 candidates in the General Election back the campaign and 130 are elected as MPs • March 2020: People with MND share their experiences as part of the Government’s review • July 2020 – February 2021: With our support, Jessica Morden MP and other MPs continue to raise the issue in Parliament • June 30, 2021: Northern Ireland announces it will scrap the six-month rule • July 8, 2021: The UK Government announces it will scrap the six-month rule

We’re pushing forward with Act to Adapt campaign

Nigel, who is living with MND, has had to wait 11 months for an assessment

EVERYONE who is living with MND has the right to live in a safe and accessible home and the Association is working hard to ensure the right help and support is available.

In September 2020, the Association launched its Act to Adapt campaign to raise awareness of the challenges that people living with MND are facing. While the situation is improving, we know that there is still a variation in the support available across England depending on local council policy.

Nigel, who is living with MND, had to wait 11 months for an initial assessment to find out whether the council would provide him with a grant to adapt his home.

He said: “My MND has progressed enormously… we’re exhausted, angry and have no energy for anything but the basics of daily living. If it wasn’t for the NHS, the MND Association and our local hospice, we’d be high and dry.”

The Association is asking all councils in England to improve the support they provide by fast-tracking support for people with a terminal illness and removing financial assessments for adaptations under £5,000. This would make a significant difference for people with MND.

We’re calling on all our members to contact their local councillors to raise awareness of MND and the needs of those who have it. You’ll find more information about our campaign at www.mndassociation.org/acttoadapt

Research funding call r

The #United2EndMND campaign reaches Westminster

Rob Burrow MBE and Stephen Darby pictured on the steps of Number 10 Yvette Cooper MP meets Rob Burrow MBE Secretary of State for Health and Social Care Sajid Javid discusses the campaign with former West Midlands Police Assistant Chief Constable Chris Johnson

AS a group of people living with MND and campaigners gathered in Westminster, the heartfelt stories behind every signature on the letter they were delivering to Downing Street were never far from their minds.

Inside the envelope addressed to Prime Minister Boris Johnson was a letter signed by campaigners and hundreds of people living with MND – a large number of them in their 30s and 40s – urging the Government to invest £50 million over the next five years to form a research institute. With the help of further funding from the MND Association, MND Scotland and the My Name’5 Doddie Foundation, the institute would accelerate progress, putting researchers in reach of effective new treatments for MND.

It was a moment Nicola Waters, a leading figure in the #United2EndMND campaign, who is living with MND, says she will never forget.

She said: “At every moment I was thinking about all the people living with MND who couldn’t be with us and every person with MND who took the time to sign the letter. It was a very emotional moment for all of us and I felt very privileged to be there.”

Earlier in the day, a group of people living with MND, including sporting heroes Rob Burrow and Stephen Darby, representatives from the MND Association, MND Scotland and the My Name’5 Doddie Foundation had spoken with 22 MPs at a meeting held in Westminster. During the event, MPs had the opportunity to learn more about the #United2EndMND campaign and the significant difference the research institute could make to the future of MND research.

Nicola said: “Everyone who came to speak to us seemed really engaged. People like the Secretary of State for Health and Social Care, Sajid Javid, were asking lots of questions and were taking the time to read through - and really understand - the proposal. There was plenty of discussion which was very encouraging to see.”

Chris James, the Association’s Director of External Affairs, accompanied coalition representatives to the door of Number 10.

He said: “The handing in to Downing Street of the letter signed by hundreds of people with MND was the very moving culmination of months of campaigning and lobbying by the members of the coalition driving the #United2EndMND campaign.

“By working together as people with MND, charities and neurologists we are making our voices heard at the very highest level. While the response we received from MPs during the day was very positive, we won’t stop until we have secured the £50 million investment needed to take MND research onto the next level.”

To keep up to date with the latest developments visit www. mndassociation.org/united2endmnd or search for @mndassoc on Twitter.