Updates from MND Scotland’s current campaigns.

Free Personal Care for under 65s: Progress update

Last month we responded to a Scottish Government consultation on extending free personal care for under 65s. We highlighted the need to introduce legislation that ensures people under 65 years old who have a terminal illness, like MND, are not charged for the free personal care they are entitled to. The Scottish Government is expected to publish the findings of the study this summer.

There has also been further development on extending free personal care following the launch of a consultation on a proposed Member’s Bill in the Scottish Parliament by Miles Briggs MSP. The proposal aims to remove the age-limit that currently restricts the right to free personal care to those aged 65 or over. MND Scotland will respond and is seeking views from our MND Voices in Scotland group.

MND Voices in Scotland

Our new group MND Voices in Scotland now has 90 members. MND Voices in Scotland aims to bring together the views of people affected by MND, to inform and contribute to the work of MND Scotland. This can be achieved in a variety of ways including awareness raising, campaigning and contributing to the development of publications, information and new services.

We want to improve the lives of people affected by MND, by ensuring that everything we do is informed by your own experiences.

If you would like to join MND Voices or find out more, we would love to hear from you. Please contact colette.mcdiarmid@mndscotland.org.uk or call 0141 332 3903.

Social Security Experience Panels

The Scottish Government has been given additional powers to oversee the administration of 11 Social Security benefits which include Personal Independence Payment (PIP) and Carers Allowance. To help inform this transition, they launched Social Security Experience Panels. The purpose of these panels is to gather “real life experience” from people who have been claiming social security benefits within the last 12 months.

We have encouraged people affected by MND to join the panels. We will also be closely following the development of Social Security benefits in Scotland, to ensure that the voices of people with MND are heard. Last year our ‘Let’s Get Benefits Right’ campaign highlighted the need for automatic entitlement and lifetime awards for people with MND.

If you haven’t already signed up to join the panels, the Scottish Government is continuing to take ‘expressions of interest’ and will re-contact individuals when recruitment re-opens. Have you already signed up? We’d love to hear from you! Please share your experiences with us, so far, by contacting colette.mcdiarmid@mndscotland.org.uk or call 0141 332 3903.

Carers Survey

In early June, we launched an online carers survey to learn more about the experiences of people who care for loved ones with MND. Thank you to everyone who has responded so far! We have now sent out the remainder of the surveys by post. Once they have been received, we will analyse the results of the survey responses to help inform our future campaign work.

If you haven’t returned your survey yet, please complete it and return in the envelope provided. If you have any questions about the survey or haven’t received one please contact colette.mcdiarmid@mndscotland.org.uk or call 0141 332 3903.