My friend Trish Dainton has created an e-petition:
e-petition
Huntington’s disease - Recognised and considered appropriately for benefits.
Responsible department: Department for Work and Pensions
With the call by Cheryl Gillan for claimants with Autism to be treated differently under the work capability assessment tests, we call for those claiming for Huntington’s disease (HD) to also be granted special treatment ‘so that it is fair and appropriate for claimants’.
HD is an inherited brain disease for which there is no cure. Classed as ‘rare’, the lack of informed medical knowledge about HD can lead to misunderstanding of its likely progression. Those diagnosed currently have a life expectancy of below 20 years from symptom onset.
The government previously singled out HD in the case of insurance. Having already decided positive testing means a life is of limited timescale, we urge the government to recognise the need to streamline the benefits process for those suffering and their carers.