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
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VERYONE 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
www.mndassociation.org
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