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Policy and Campaigns

MND Scotland Manifesto Support

MND Scotland produced its Manifesto for People Affected by MND at the end of last year, in consultation with people affected by the illness. Before Christmas we sent it to the main political parties asking them to consider it in their own manifesto development. Since the start of 2016 our supporters have been contacting their local candidates and over 100 candidates have pledged their support. All the manifestos for the… read more »

MSPs Back Statutory Right to Communications Equipment

MND Scotland was delighted by yesterday’s confirmation in Parliament that MSPs will back the Scottish Government’s introduction of a statutory right to communications equipment. MND Scotland has been campaigning for this change through our ‘Let me Speak’ campaign, which was launched during MND Awareness Week in June 2015. The campaign highlighted the devastating impact of voice loss for many with MND and the need for a statutory duty to provide… read more »

MND Nurses in Scotland update

On 7th January 2015, the First Minister, Nicola Sturgeon MSP, committed to doubling the number of MND Specialist Nurses, in Scotland, and to ensuring that they are paid for from public funds, instead of being 80% funded by MND Scotland. The Scottish Government committed £700,000 to this pledge and as of April 2015, MND Specialist Nurses, in Scotland, have been paid from the NHS. Scottish Government funding went to the… read more »

First Minister Announces a New Statutory Right to Communications Equipment

MND Scotland was delighted to hear the First Minister announce yesterday in Parliament that the Scottish Government will introduce a statutory right to communications equipment. During her outline of the First Programme for Government 2015/16, the First Minister stated “Access to voice equipment is vital to anyone who is at risk of losing their voice as a result of conditions like MND.  Gordon Aikman and MND Scotland have been campaigning… read more »

Christina McKelvie MSP stays silent for MND

  Yesterday morning (Thursday 18th) Christina McKelvie, MSP for Hamilton, Larkhall and Stonehouse, took on Silence Speaks – our Awareness Week fundraising activity. Christina did her constituent briefing using only notes and gestures to communicate. Being a Politician and used to being outspoken Christina said: “This was rather difficult and frustrating as I wanted to ask so many questions but had to stick to writing notes and using gestures. “I… read more »

First Minister backs our calls for communication equipment

  The First Minister, Nicola Sturgeon, and leading opposition politicians have vowed to speak with one voice when it comes to improving access to communication equipment for Motor Neurone Disease patients. The comments come as Nicola Sturgeon, Kezia Dugdale, Ruth Davidson, Patrick Harvie and Willie Rennie today (Tuesday) trialled cutting-edge “eye-gaze” technology – which allows patients who have lost their voice to speak again – as part of MND Awareness… read more »

‘Let me speak’

MND Scotland Communications Equipment Campaign   People with MND can lose the ability to walk, eat, speak and breathe unaided.  80 – 95% will have their speech affected.  They may struggle to speak clearly or lose their ability to speak altogether. For many people with MND, losing their ability to speak is the very worst symptom of the illness. Those affected need to find alternative ways of communicating with loved ones… read more »

First Minister’s Announcement on MND Nurses

MND Scotland is delighted to hear that First Minister, Nicola Sturgeon MSP, has committed to doubling the number of MND nurses in Scotland and ensuring that they are paid for by the NHS. Doubling the number of nurses will make an enormous difference to people with MND across Scotland. It means that patients will have greater contact with the nurses as they won’t have such huge geographical areas to cover. Currently… read more »

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 »

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