On Tuesday 7th?June,?the Association attended a parliamentary reception ? accompanied by campaigns volunteers Heather Smith, and Katy and Mark Styles representing people living with MND and their carers. In all, they spoke directly to about 12 MPs including Justin Tomlinson MP (Minister for Disabled People) and got across some powerful messages about the challenges they and others in their position face. Just a few of the key facts from our carers survey of 2015 that were shared:

• Over half of carers of people with MND provide more than 100 hours of care per week. Just one of those carers provides care worth a minimum of ?89,440 per year.
• Almost two thirds of MND carers don?t receive any benefits or allowances
• 56% of MND carers are retired, while 29% balance their caring responsibilities with remaining in work.

38% are unaware of their right to a carer?s assessment, while only a third have actually had one.

Late in the day Carers Week was granted a parliamentary debate, which was great news. All the work in Carers Week and the weeks running up to it, including the success of the All Party Parliamentary Group meeting held on 24 May, came together. This meant that the MPs present were able to use the facts and personal stories they had heard to great effect. MND was strongly represented during the debate and our concerns and recommendations were heard at the highest level.

Katy Styles said,

?I went to Parliament with the MND Association wanting to be valued. Gosh do I feel valued now! A great mention in the carers week debate by one of the MPs I met at the reception, Barbara Keeley MP.?