MP meets Motor Neurone Disease campaigners

Arundel & South Downs MP Nick Herbert met with Sussex campaigners calling for changes for patients with Motor Neurone Disease during a rally in Parliament Square Gardens last month (Wednesday 16 May).


The campaigners were highlighting their concerns that the benefits system is overly complicated, causing people with Motor Neurone Disease (MND) to face unnecessary reviews of their degenerative condition.

Julie Unstead, from Hassocks, and Sue Sheppard, from Horsham, told the MP that, despite the Government announcing a Severe Conditions Exemption last year, Employment and Support Allowance claimants are still being asked to undergo a final assessment.  It is estimated that around 600 people are affected.

The Allowance provides a much-needed income for those who have MND.  It is estimated that care costs and other essential support can cost on average £12,000 a year. 

The Government made a commitment in 2016 to end the practice of unnecessary and stressful reviews of lifelong conditions.  The revised policy will benefit hundreds of people living with MND and similar conditions.

In September 2017 the Department of Work and Pensions (DWP) announced that patients with progressive and incurable health conditions would be put into an ESA Support Group of claimants.  This recognises them as being unable to work because of their condition and removes the need to review their eligibility on a recurring basis.

Mr Herbert said: “I was pleased to meet Julie and Sue today, to hear how those living with MND are being affected by the assessments process.  Motor Neurone Disease is a terrible and degenerative condition, and it is important that the Government examines the impacts of benefits assessments on this group of people.”



1.     Photograph – (left to right) Julie Unstead, Sue Sheppard, Nick Herbert and Sandra Smith, a trustee of MND Association, in Parliament Square Gardens.

2.     To read the Government’s announcement from September 2017 ‘Benefit reassessments stopped for those most in need’ see

3.     To read more about the MND Association campaign see