The DWP is still ‘penalising’ terminally ill people

The Department for Work and Pensions (DWP) has recently changed its rules around social security claims for terminally ill people. The new rules apply in England and Wales. But people are saying it has not gone far enough. So, someone has launched a petition while charities campaign for further action.

DWP: Special Rules

From 4 April, the DWP changed the rules for fast-tracking social security for terminally ill people. Previously, the DWP would only give fast-track claims to people with six months to live. These are called the Special Rules. For years, charities, MPs and campaign groups were lobbying the government over this. As one parliamentary committee noted:

the… “six-month rule”, is unfit for purpose… outdated, arbitrary and not based on clinical reality.

The point being, many terminally ill people have more than six months to live. But they’re still going to die at some point.

So, the government looked at the rules. It said that the DWP should align them with the NHS definition of “end of life” which is 12 months. And from 4 April, these new rules took effect.

Still problematic

But they are still not without problems. Firstly, as the Motor Neurone Disease Association (MNDA) said the rules still only apply for Universal Credit and Employment and Support Allowance (ESA) claims. The DWP hasn’t applied them to Personal Independence Payment (PIP), Disability Living Allowance (DLA) and Attendance Allowance. These are social security payments for chronically ill and disabled people.

Also, terminally ill people, regardless of life expectancy, will experience severe mental and emotional distress. As the campaign group My Death, My Decision said:

We want people to have a better end of life experience, keeping their quality of life as high as possible for as long as possible. People who have an incurable illness that will eventually end their life should have ready access to the benefits they need.

Now, a petition is calling on the government to scrap the 12-month rule almost as soon as it introduced it. Mark Hughes, who created the petition, said he feels the new rules are:

penalising people with a terminal diagnosis but who are not expected to die in the next twelve months.

He notes that when you have a terminal illness

the last thing you need is a fight to get your benefits.

Hughes says that the 12-month rule still causes:

unnecessary suffering to people who have been told they are going to die. As soon a person is diagnosed they should automatically be fast-tracked. Why must a time scale be placed?

Terminal means terminal however long you have left to live.

An unnecessary rule

A study into terminal illness in 2015 found that while most patients died within a year of diagnosis, a small number (4.5%) lived longer. Even the government’s own review of the Special Rules showed that 12 months was not an agreed benchmark. For example, in Australia and New Zealand “terminally ill” is used for people who will die within two years. Closer to home, and in 2018, the Scottish government removed any time frame attached to social security for terminally ill people. In the North of Ireland, the government has applied the 12-month rule to all disability-related social security.

So, it seems in England the DWP is not only lagging behind other home nations but also some international ones, too. As the MNDA said over the North of Ireland changes:

there is now a real disparity in access to benefits across the United Kingdom for people with terminal illness. This needs changing now to ensure no one has to suffer the indignity of a long, drawn out claims process.

The DWP says…

A DWP spokesperson told The Canary:

We are helping more people in the final year of their life get faster access to vital financial support in the most challenging of times, with the majority receiving the highest possible award and paid within three days of making a claim.

The changes to Special Rules for End of Life were implemented into Universal Credit and Employment and Support Allowance earlier this month and will be extended to Personal Independence Payment, Disability Living Allowance and Attendance Allowance as soon as Parliamentary time allows.

The DWP needing “parliamentary time” to implement more changes is not without unpleasant irony. Time is not something terminally ill people have. But Hughes’s petition really gets to the crux of the matter. Because regardless of how long someone has to live, a terminal diagnosis is just that. And DWP policy should reflect this.

Featured image via Gaertringen – Pixabay and Wikimedia