DWP rules leave terminally ill people still not getting benefits like PIP quickly enough

A ripped brow envelope representing benefits like PIP for terminally ill people and the DWP logo
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One of the cruellest parts of the Department for Work and Pensions’ (DWP) rules has become the subject of a petition. It’s to do with benefits like Personal Independence Payments (PIP) and people who are dying.

The petition is calling on the DWP to stop ‘penalising’ terminally ill people and give them the benefits they’re entitled to as soon as possible. However, the petition is also personal to the person who started it, because he is dying of bone cancer.

Benefits like PIP and terminal illness

Currently, the DWP will only fast-track terminally ill people’s benefits claims if a doctor says they have 12 months or less to live. And this is currently only for certain things like Universal Credit, not PIP. The DWP does this under so-called Special Rules. However, many people think this is not good enough. As the Canary previously reported:

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.

So, campaigner Mark Hughes is taking action. He lives with terminal bone cancer and can no longer work, but he has struggled to get the benefits to which he was entitled. As Mark previously told cancer charity Marie Curie, the DWP caused him numerous problems when he tried to claim benefits. For example, Mark said:

I had numerous letters from them over months with the same questions being asked over and over again. Sometimes, forms were sent by mistake – I was having to deal with all of this while still dealing with the news that I was terminally ill.

The DWP stopped, then restarted, then stopped again Mark’s various benefits. All this left him realising just how broken the DWP’s systems are for terminally ill people. So Mark has taken to campaigning around the issues terminally ill people face when trying to access DWP benefits.

Read on...

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DWP: not going far enough

Mark has previously had some success. He and Marie Curie were involved in getting the government to change the rules for benefits and terminally ill people. Before, the DWP would only fast-track claims if the person had six months to live. After campaign groups, including Mark and Marie Curie, lobbied the government, the DWP changed the rule to 12 months. However, as the Canary reported at the time:

terminally ill people, regardless of life expectancy, will experience severe mental and emotional distress.

We noted at the time that Mark, in a previous petition that called for the DWP to fast-track anyone with a terminal illness, said that the 12-month rule still gives:

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.

Unfortunately, the government dismissed Mark’s previous petition – and it didn’t reach the 100,000 signatures needed to prompt a parliamentary debate. Moreover, the DWP still hasn’t changed the criteria for all benefits either. It has currently put the 12-month rule in place for Universal Credit and Employment and Support Allowance (ESA). However, the DWP has still not said when it will do the same for health-related benefits like PIP.

So, even before the DWP has rolled out the previous amendment, Mark is once again campaigning to get the rules changed.

‘Terminal illness does not respect a calendar’

Mark’s new petition states that:

Dying people need fast-track access to welfare support but currently this only happens if doctors tell you that you have 12 months left to live. This isn’t good enough. A terminal illness doesn’t respect a calendar. A terminal illness means many like me have to give up work. But thousands will miss out on financial support because they have a prognosis of more than 12 months. The government says its compassionate but the restrictions helping dying people is the opposite to compassionate.

You can sign the petition here.

It seems perverse that the DWP hasn’t updated the 12-month rule for benefits like PIP – but also that it applied the 12-month rule overall in the first place. As Mark says, giving terminally ill people immediate access to benefits should be standard, regardless of life expectancy. By doing anything less than this, the DWP is penalising dying people – which is cruel in the extreme.

Featured image via the Canary and Wikimedia

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Get involved

  • Sign Mark’s petition calling on the DWP to give full, fast-track access to benefits for all terminally ill people

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