Today I called on the Prime Minister to overhaul a deeply unfair benefits system which makes it difficult for people with terminal illnessses to access benefits when they need them.

Speaking in Prime Minister’s Questions today via video link, I said “In order to access benefits quickly, people with unpredictable terminal conditions like Motor Neurone Disease are having to prove that they have six months or less left to live; and they risk losing their benefits altogether if they live longer than three years. A year has now passed since the government announced its review into access to benefits for terminally ill people, but still no progress. When are the government going to act?”

In his response, Prime Minister Boris Johnson said he would write to me on the issue.

I’m sponsoring a private members bill designed to improve access to benefits for people living with terminal illnesses. The bill is due to come before the Commons in September.

As I mentioned today, a long and frustrating year has passed since the government announced its review into access to benefits for terminally ill people. It’s heartbreaking that people living with terminal illnesses and their families are having their final months together wrestling with the complexities of a deeply unfair benefits system. The six month and three year rules I mentioned in my question need to be scrapped and I hope my private members bill can spur the government into action.

The Special Rules for Terminal Illness claims process is intended to enable people who are terminally ill to access disability benefits rapidly, without going through the standard application process.

A Special Rules claim requires the person’s doctor, consultant or specialist nurse to submit a medical form stating that the person is likely to die within 6 months. Successful claims under the Special Rules enable the claimant to access higher rate of benefits more quickly without having to fill in long forms, undergo face-to-face assessments or wait weeks for payments. It also exempts people who are terminally ill from the requirement under Universal Credit for claimants to discuss their work aspirations with a work coach. Campaigners from the Motor Neurone Disease Association and Marie Curie have highlighted that the ‘6 month rule’ is flawed as does not account for the unpredictability of terminal conditions.

Benefits awarded under the Special Rules are only granted for three years. If someone with MND survives longer than expected, their benefits will be stopped after three years. This means that people who are extremely ill – they may be completely paralysed, ventilated and unable to speak – are receiving letters telling them their benefits will stop unless they make a new claim.