Policy & Campaigns Update

– by Colette McDiarmid, Policy Officer

Parliamentary Reception

With just over 3 months to go, the plans are being finalised for our annual parliamentary reception. The reception is held every year during awareness week as a way of raising the profile of Motor Neurone Disease among parliamentarians.

We are delighted to announce that we have a new host for our parliamentary reception. Bob Doris, MSP for Maryhill & Springburn, has accepted our request to host the reception on 18th June 2019 in the Scottish Parliament.

Bob has been a supporter of MND Scotland and has often highlighted the fundraising efforts of his local constituents in Springburn and Maryhill. He also chairs the Cross Party Group on Palliative Care in the Scottish Parliament which aims to increase awareness and raise the profile of palliative care.

We are also thrilled to announce that Christina McKelvie (pictured right), Minister for Older People and Equalities, a long standing supporter of the charity, will attend the reception as a keynote speaker. Christina, who has been an MSP since 2007, was appointed to the Scottish Cabinet last year. In her new role, Christina is now responsible for the policy development of social and human rights, equalities protection and disabilities in Scotland.

If you haven’t been to the parliamentary reception before you can look at details from last year’s event. We had some fantastic speakers last year, including the late Dennis Dick MBE, who delivered his speech with the use of Augmentative Alternative Communication (AAC) equipment. Dennis lost his voice to MND but that didn’t prevent him from sharing his story with around 100 guests, including MSPs. If you would like to view his speech, you can see it here.

The reception will be held in the Garden Lobby of the Scottish Parliament. The format is relatively informal and starts off with speeches from the host and other people affected by MND. This is followed by some nibbles and refreshments where you will have the opportunity to meet other people affected by MND, MSPs and some of the MND Scotland staff.

We will be sending invites to people with MND in April. If you would like to find out more about the reception in the meantime, please contact colette.mcdiarmid@mndscotland.org.uk.

Neurological Standards and National Action Plan

A large part of the policy and campaigns teams’ role is to influence policy, both directly and indirectly. The Scottish Government has been openly consulting with stakeholders on the new national action plan. This gives us an opportunity to shape policy and ensure that the needs of people with MND are represented in Scotland.

The draft National Action Plan for 2019-2024 was published in November, following calls to improve neurological care in Scotland. The plan outlines its overall aims, as well as 17 key commitments, to improve neurological care and support in Scotland. The commitments include promoting Anticipatory Care Plans (a plan to help an individual think about their future health and care needs), developing a sustainable neurological workforce and working with the Chief Scientist’s office to increase research trials.

The draft Neurological Standards will be used by organisations which deliver health and social care to measure standards and illustrate that they are providing high quality services. The standards will be applicable to anyone living with a neurological condition in Scotland, including people with MND. In our response to this consultation, we also used the findings of our survey, which we commissioned last year.

We have now submitted our response to both consultations and will keep you up to date when a report on the responses are published.