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Policy and Campaigns

Neurology Patient Experience Survey

The European Federation of Neurological Associations, EFNA, is launching a European survey on the impact of living with a brain disorder. The aim of the survey is to: Find out how neurological disorders impact on the home, work/educational and social life of those affected. Explore the association with related conditions/syndromes e.g. mental wellbeing, chronic pain, bladder and bowel problems etc. Assess the satisfaction rates with treatment and management. Data generated will… read more »

Care Charging highlighted in First Minister speech

Following her meeting this week with Gordon Aikman and our CEO, Craig Stockton, new First Minister, Nicola Sturgeon MSP, highlighted personal care charging for terminally ill people in her first legislative programme statement. The First Minister stated “I want to make clear today my expectation that no terminally ill person in the last six months of life should be charged for personal care.” “I can also advise Parliament that if new… read more »

First Minister Promises to Review MND Care

Gordon Aikman and our CEO, Craig Stockton, met with First Minister, Nicola Sturgeon, yesterday to discuss care provision for people with MND. Gordon and Craig highlighted: the postcode lottery of personal care charging for terminally ill people in Scotland, first highlighted in our campaign in June. that most of the funding for Scotland’s NHS employed MND specialist nurses comes from MND Scotland charitable donations; and, that more MND specialist nurses… read more »

Gordon Aikman secures First Minister meeting

Last Thursday evening, Gordon Aikman won the Judges’ Award at the Herald’s prestigious Scottish Politician of the Year Awards 2014, for his Gordon’s Fightback campaign. During his inspiring acceptance speech, Gordon highlighted that there are only 7 MND specialist nurses in Scotland and how funding for their posts relies on charitable donations to MND Scotland. Gordon finished his speech by asking First Minister, Nicola Sturgeon, for her support. Today, Gordon… read more »

Now Hear Me: It’s My Right To Speak

Not everyone has the ability to speak but being able to have your say is a basic human right. A new campaign has been launched to encourage all of us to find out what we can do to support those who use ‘alternative and augmentative communication’ (AAC). AAC can include various methods that can support or get around problems that an individual might have with speaking or understanding information. These… read more »

East Ayrshire Council’s personal care charging u-turn

East Ayrshire Council has finally agreed to amend its grossly unfair personal care charging policy for under 65s who are terminally ill. Andy Masterton, who has MND, and was featured in our Personal Care Charging Campaign and BBC Scotland coverage of the campaign, has now had his care costs waived by East Ayrshire. We launched our Personal Care Charging Campaign at the start of MND Awareness Week in June. We… read more »

Gordon Aikman’s 5-point Fightback!

Gordon Aikman launches his 5-point fightback website, gordonsfightback.com today.  Read all about it and get involved. During MND Awareness Week in June, Gordon, who was recently diagnosed with MND at the age of just 29, shared his moving and inspirational personal story with the press.  Gordon’s story was soon picked up on Twitter and retweeted by a wide range of influential people including the First Minister, Alex Salmond, Ed Miliband… read more »

40 MSPs attend MND Scotland Parliamentary Reception

On Wednesday evening, in the middle of MND Awareness Week, 40 MSPs attended MND Scotland’s Parliamentary Reception to speak to our 90 guests and hear about issues important to them. Our guests were predominantly people with MND, their families and friends, and supporters of the charity. 40 MSPs is a really high turnout for an event like this and we welcomed the opportunity to raise awareness of MND, MND Scotland… read more »

MND Awareness Parliamentary Reception 2014

MND Scotland’s Awareness Week Reception takes place at the Scottish Parliament tonight. Christina McKelvie MSP is sponsoring the event and Public Health Minister, Michael Matheson MSP, is our guest speaker. Over 90 guests will be hoping to speak to their MSPs about issues that matter to them. MND Scotland will highlight a number of issues including our Personal Care Charging Campaign which was positively responded to in Parliament yesterday.

MND Scotland Personal Care Charging Campaign

Background Personal care, provided by local authorities for people who need it at home, can include help with washing, feeding, dressing, toileting and getting in and out of bed. Since 2002, people over 65 years in Scotland have received free personal care. People under 65 years, who require personal care, are financially assessed by their local authorities to ascertain whether or not they should make a contribution. What’s the problem?… read more »

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