End-of-life benefits ‘need urgent action’

End-of-life charities have called for urgent reforms to the “overly complex and stressful” benefits system.

In the past three years a total of 146 people in Bath and North East Somerset have applied to the Department for Work and Pensions (DWP) for urgent support after being diagnosed with a terminal illness.

Under current rules, patients can access benefits quickly and at a higher rate if their clinician says they have six months or less to live. Reforms have been promised by Westminster, which will extend the six months end-of-life rule to 12 months.

But critics say the timetable for reforms is unclear and that the proposed changes, although an improvement, do not go far enough. They want the Government to scrap the requirement for people on terminal illness benefits to be reassessed every three years, and to accept medical practitioners’ prognoses.

Susie Rabin, head of policy and campaigns at the Motor Neurone Disease Association charity, said:

“Frankly, the Special Rules for Terminal Illness process doesn’t work for some people. It’s a real challenge for people with Motor Neurone Disease (MND).

“MND is very unpredictable which makes it very, very hard for a clinician to give a prognosis and that makes it very hard for people with MND to access benefits through the special rules route. One third of people die within one year of diagnosis but it’s very difficult for an experienced neurologist to say how long a patient has left.”

Madeleine Moon, former Labour MP for Bridgend, sponsored a Private Members’ Bill in 2018, which proposed to remove the six-month time limit and replace it with a clinical judgment made by an appropriate health professional.

Mrs Moon - who lost her husband Steve to MND - said: “The cruelty, if not the inhumanity, of the current system is shocking.

“We are asking people to say ‘I’m dying’ and the last thing they want to say when they are dying is that. They want to say ‘I will fight this’; currently the rules are not allowing them to do that.

“I’m glad the Government has accepted the current rules are wrong. I’ve not been party to the meetings with the Government but 12 months is psychologically so much better.”

Over the past three years, around 100 people in Great Britain who were denied end-of-life benefits died whilst awaiting the result of an appeal, known as a mandatory reconsideration.

End-of-life charity Marie Curie said it had “serious concerns” the DWP could not see when dying people needed support.

Dr Sam Royston, its director of policy and research, said: “If people are dying before their mandatory reconsideration then it is highly likely that they were living with a long-term or terminal illness and many of these people should have received fast-track access to support.

“This raises serious concerns about the DWP’S ability to recognise when a claimant is approaching the end of life and is in desperate need of support.

“It also highlights the importance of getting these application decisions right first time – the fact so many people are dying without support makes clear that people with terminal illnesses do not have time to wait.”

A DWP spokesperson said: “Terminal illness is devastating, and our priority is dealing with people’s claims quickly and compassionately.

“Those nearing the end of their lives can get fast-track access to the benefits system, with the majority receiving the highest possible award and paid within three days of making a claim.

“We will be extending the current six-month end-of-life rule to 12 months so more people can get the vital support they need.”

We are asking people to say ‘I’m dying’ and the last thing they want to say when they are dying is that. Madeleine Moon