A message to our supporters from Dr Jane Haley, interim CEO

Firstly, thank you for continuing to support MND Scotland. It has been an incredibly challenging time, and we really value your continued support. 

As we’ve made you aware, the charity currently finds itself in a challenging financial position. We have been working hard to secure the future of the charity. We want to give you the clarity that we know you need and counter any misinformation you may have heard.   

We have been delivering our charitable objectives at a level that meant we have been spending more than we were receiving for a while. This is partly because there are more people living in Scotland with MND than ever before, but also because we had increased the amount of support we were offering and were continuing to invest in research. This increase in expenditure was being supported by our significant reserves but this is only sustainable for so long.  This increased activity was planned against an anticipated increase in income, but our income has been fairly consistent for the past decade.  

The charity has no debts and no creditors, but it has become necessary to reduce our expenditure and this is what we are now doing, in agreement with our Board of Trustees. We are reducing a number of costs, including reducing the number of colleagues and salaries, in order to reduce expenditure to better match income. Some of these are temporary measures.  

During this challenging period, we are prioritising direct personalised support as we know this is valued by the MND community. It is really important we have people available to communicate with people affected by MND, help to maximise incomes, and sort out challenges, for example getting timely housing adaptations. This direct support is not easy to access elsewhere. We are also continuing to provide other services the MND community finds very valuable – including voice banking, counselling, which is particularly important for carers who cannot access this via the NHS, and free Wills and Power of Attorney. 

We have paused our grants to individuals until we are in a better position to make these available again. In the last two years, an average of £545,000 per year has been spent on our grants programme, having risen from about £250,000 per year in previous years. This reflects the increased level of need but also the increase in provision that was implemented three years ago. We have also paused our equipment provision and we are working with the Scottish MND nursing team to try and make sure provision is met wherever possible. 

We are continuing to deliver on all our core charitable activities, but we are prioritising personalised support for people. Although we will continue to fund the research we are committed to, there will not be any new funding calls for research until we are in a much better financial position.  

Our aim is to be as open and transparent as possible with the MND community, and we hope this is a helpful clarification on our current situation. 

Thank you for sticking with us through these difficult times. We are committed to being here for the MND community for many years to come. 

With thanks, 

Dr Jane Haley