Financial impact of MND Survey

The MND Association have commissioned a piece of work to show that being diagnosed with MND/Kennedy?s Disease has a huge financial impact on families. This work is being undertaken by DEMOS and was started following East Kent Group?s Katy and Mark Styles?s speech to the All Party Parliamentary Group on MND in Parliament this time last year. There are two surveys currently running. One is for people living with MND and the other is for bereaved carers of people with MND.

Katy said ? It is a sensitive subject to speak about finances to anyone. I know, first hand, that unless people with MND/ Kennedy?s Disease and their families speak about their real day to day financial worries, decision makers like MPs and councillors will never understand all of the extra costs that MND brings. Seeing the penny drop on the faces of those in parliament, when Mark and I spoke about the adaptations we had made to our home, talking about income we do longer had and equipment we had to buy ourselves, made a collosal difference to those present. I so want this report to have lots of personal stories like ours about the financial difficulties we have to face in light of the disease. Our personal stories of our own financial impact are so powerful and need to be recorded.”

Financial impact of MND


We believe that MND can cause a huge financial impact on people living with MND and their families, but we?d like to understand more about that and what needs to be done to support them.

The MND Association has partnered with Demos (an independent think tank based in London) to research the financial impact of MND, and raise the public profile of this important issue. We?ll be publishing our findings in 2017 and using them to inform our work with key stakeholders in health, social care, local government and national politicians.

How can you take part?

There are two surveys:

Are you living with MND?

Complete the survey for people with MND

Take the survey

Or you can pick up a paper survey from your Care Centre, Branch or Group, or contact

Have you lost someone to MND?

Complete the survey for bereaved carers of people with MND

Take the survey

While a very sensitive topic, we think it is important to consider the financial impact alongside other impacts (e.g. on health and wellbeing) that bereavement from MND has on people?s lives.?

Surveys need to be completed by Friday 27 January 2017.

We would really appreciate your support with this important research.

If you have any further questions about the project, please contact Simone Vibert at Demos by emailing or by phone on 020 7367 4200.

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