Read our open letter

 

Dear Rt Hon Liz Kendall MP

 

The UK government’s proposed benefits cuts will have a devastating impact on people affected by Huntington’s disease and we urge you to rethink these proposals.

 

Huntington’s disease is a rare, hereditary neurodegenerative condition that affects movement, cognition (including perception, awareness, thinking and judgement), behaviour, and mental health. Around 8,000 people in the UK are living with the disease with a further 32,000 at risk. There is currently no cure, due to the complex genetic mutation that causes progressive and irreversible damage to the brain. Every child conceived naturally to a parent with the faulty gene has a 50% chance of inheriting it.

 

In the early stages of Huntington’s disease, a person may still appear physically well but cognitive impairment can be profound and disabling. Difficulties with decision-making, planning, processing information, and managing day-to-day tasks can prevent people from working or studying long before physical symptoms become obvious. This makes it especially difficult for them to meet the new Personal Independence Payment (PIP) eligibility criteria proposed in your reforms.

 

Many people affected by Huntington’s disease rely on the benefits system for vital support and as the disease progresses, the financial strain increases. Families often take on unpaid caring responsibilities, which can severely impact their own employment and wellbeing. Without adequate support, they face significant hardship.

 

Your plans, particularly the tightening of PIP eligibility and cuts to the health element of Universal Credit (UC), will harm people affected by Huntington’s disease. We are particularly shocked by the failure to consult with disabled people on some of these changes.

 

We ask that you listen to the communities who will be affected by these cuts and reconsider your damaging proposals for benefits reform.

 

Yours sincerely

Cath Stanley

Chief Executive, Huntington’s Disease Association

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