AGM 8 July – special resolution

At our AGM on 8 July, our members have been given a special resolution to vote on. This is a resolution which would allow us to become a UK-wide charity and to operate in Scotland.

To give some context to you, our members, on why we are asking this, we have put together some of the key questions and answers, which we hope you find helpful and informative as you prepare for the vote. 

Why are you looking at becoming a UK-wide charity?

Our exploratory conversations began last year when MND Scotland approached us regarding their financial challenges. We were asked to treble our investment into the MND-SMART trial, committing £1.5m. The trial is based in Edinburgh and is for the benefit of people with MND across the UK. We agreed to this, as it was the right thing to do for the MND community.  

We remained in close dialogue with MND Scotland and left the door open for any further support we could give as they navigated the months ahead.

Around the same time, we began receiving requests from people with MND in Scotland, asking to be able to access our support funds. Sadly, given we are not registered in Scotland, we have had to say no.

This, together with the sense of uncertainty in Scotland, led our Board to start considering the differences between services available to people affected by MND in England, Wales, and Northern Ireland, and those available in Scotland. They decided that this inequity of provision is not something they are comfortable to see continuing.

This belief that we can make a significant difference to people with MND in Scotland with the services we can offer and the support we can give is what has driven the decision to look at becoming a UK-wide charity.

We very much see this as complementary to what MND Scotland provides and want to continue to work in partnership with them and other Scottish charities. 

What will the MND Association provide in Scotland?

We offer a range of support and services to people affected by MND in England, Wales and Northern Ireland, and we would want to give people in Scotland access to these. But we know this would need careful planning, and we want to ensure we are not duplicating the work of other charities.

Initially, we would offer our support funds, where people with MND can apply for up to £4000 per year, which is not means tested. This is a level of funding that is not available to people in Scotland now.

We know how much value people get from these funds across England, Wales and Northern Ireland, and we believe that extending this to Scotland would make a substantial and positive difference to the MND community there. 

What has the MND Association Board already decided and actioned? 

The Board has discussed and agreed to ask our membership to vote on us becoming a UK-wide charity. But this would require a change of our articles - the rules we are governed by - and that can only be done if our members vote for it (and 75% of those voting would need to vote yes for the change to be made).

So, while our Board has made a recommendation, the decision about whether we go ahead with this is down to our membership. 

What is the membership being asked to approve? 

A change to our articles, as above.

If the special resolution is passed, we would then work with the Scottish charity regulator, Office of the Scottish Charity Regulator, (OSCR) to seek registration. We would only be able to go ahead with this if OSCR approved our application. We would also need to update our articles with the Charity Commission of England and Wales. 

What would happen if the motion were carried? 

We would apply to OSCR to seek legal registration to operate as a charity in Scotland, so we can start delivering our support to people living with and affected by MND.

Alongside this, we would be working with our partners, stakeholders and the community in Scotland to listen to people’s needs and develop our plans for supporting people affected by MND there. 

What would happen if the motion wasn’t carried? 

We wouldn't pursue any further conversations with OSCR or with the MND community in Scotland.

We would take this decision from our members and continue our work, as we do now, across England, Wales and Northern Ireland.

This would mean the situation would be likely to continue where people affected by MND in Scotland are not able to access the same level of support as those in the rest of the UK.

Are you looking to replace MND Scotland?

Absolutely not.

We have worked in collaboration and partnership for many years, and this is the approach we would continue to take in the event of a yes vote. We are very clear that the more we work in collaboration with MND Scotland, the greater impact we will have for the MND community.

We believe however, with our resources, we can add real value to the MND community in Scotland.

How does the membership vote? 

Our AGM partner Civica will be sending a meeting link to members on either 7 or 8 July, following this link will enable the member (or proxy) to join the AGM. If a member has appointed a proxy, they will not get the link, it will just go to their nominated proxy.

Voting options will automatically appear at the appropriate time during the AGM. 

We do hope this gives clarity on why we are seeking this valuable resolution. We very much look forward to our 41st AGM on 8 July.