PIP stands for Personal Independence Payment, and it may be that a person is able to get this payment to help with some of the additional costs if they have a long term ill-health or disability. The rules for PIP differ if the person is terminally ill.
Last year, the then-Secretary of State for Work and Pensions Amber Rudd announced a review into the process.
And this week, during Work and Pensions Questions in the House of Commons, MPs asked DWP ministers for an update.
Chris Evans MP asked Justin Tomlinson about the current six-month life expectancy rule relating to claiming PIP under Special Rules for Terminal Illness.
Mr Tomlinson told the House that the Department had made “good progress”, adding that they “expect to be able to provide an update on the outcome of the evaluation shortly”.
In a second question, Mr Evans said that only 50 percent of people diagnosed with Motor Neurone Disease can claim under the PIP special rules due to the six-month life expectancy rule, adding that others with the condition need to go through standard procedures.
Mr Tomlinson went on to assure MPs that a change would be coming into effect.
He explained that the coronavirus crisis had resulted in a delay in the evaluation, but insisted a change would be brought forward “shortly”.
He told MPs: “The Secretary of State and I are passionate about making changes: it will not be the status quo.
“COVID-19 caused a delay to the final part of the consultation with the medical professionals, but we will bring forward a change shortly.”
Following the update, Susie Rabin, Head of Policy and Campaigns at the Motor Neurone Disease Association spoke to Express.co.uk about the charity’s Scrap 6 Months campaign.
“It’s a lot easier process, going through Special Rules. You just need a form called a DS1500 signed by your clinician to say that you are terminally ill, and that means that your benefits are fast-tracked. And for PIP, the disability benefit, you go straight to the higher rate as well,” she said.
However, despite being diagnosed with Motor Neurone Disease (MND), the current system means some cannot claim PIP via the Special Rules, instead needing to claim via the standard process.
“It’s an unpredictable disease and it’s very hard for clinicians to be able to say when someone is within a ‘reasonable expectation of death within six months’,” Ms Rabin told Express.co.uk.
The Scrap 6 Months campaign is something which The Association has been working on for nearly two years.
Being diagnosed with MND can mean people with the condition and their families face huge costs.
Research by the Association has found that, on average, people spend an extra £12,000 a year just coping with the illness.
“It has a massive impact. Most people will at some point have to stop working, their families may have to stop working in order to provide some support for them,” Ms Rabin said.
“They’ll have additional costs in adapting their home, specialist clothing, feeding equipment, maybe a sort of specialist iPad for that sort of communication.
“There are a lot of costs, and people and their families will have had to give up work.”
With a “change” now having been promised this week, what are the campaigners’ hopes?
Ms Rabin said: “We would obviously like to see that review published very soon.
“We’d like to see that ‘reasonable expectation of death within six months’ removed and actually a clinical decision on who is terminally ill – like Scotland has done – as the basis of who is able to access this process.
“And we’d also like there to be Lifetime awards.
“At the moment, a Special Rules benefits award is given for three years and for the very small number of people with MND who do live longer than three years, that means actually they’ll get a letter saying their benefits will stop, and they have to reapply. To receive that can be very devastating.”