Terminally ill patients missing out on vital payments

By Alexandra Warren
alexandra@slpmedia.co.uk

There are fears scores of terminally ill patients will never get the financial benefits they need because the system is too difficult and stressful for them to find a way through.

Almost 2,500 people in South London have applied for urgent financial support after being diagnosed with a killer disease, such as cancer, in the last three years – most during the pandemic.

But many will never see the money – around 100 people in the UK died before receiving their end-of-life payments in the same period.

In the last financial year alone, 102 Croydon residents, 95 Lewisham residents and 85 Bromley residents have applied for benefits under the Special Rules for the Terminally Ill.

Patients can get emergency access to cash, known as Personal Independence Payments (PIP), and at a higher rate if their doctor says they have six months or less to live.

A further 82 people in Greenwich, 79 in Southwark, 67 in Lambeth and 51 in Wandsworth have also applied for the end-of-life payments.

But end-of-life charities have raised concerns that the system does not work for some. Many South Londoners are left stressed while waiting for payments.

Other terminally ill patients have also been left without payments as they are unable to prove their prognosis, or do not know if they have six months to live.

Head of policy and campaigns at the Motor Neurone Disease Association, Susie Rabin, said: “Frankly, the Special Rules for Terminal Illness process doesn’t work for some people.

“Motor Neurone Disease (MINA) 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, has campaigned to remove the six-month time limit and replace it with a clinical judgement made by a doctor or nurse.

Mrs Moon, who lost her husband Steve to motor neurone disease, 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.”

Reforms have been promised by the government, which will extend the six months end of life rule to 12 months. But critics say the proposed changes do not go far enough.

They have called on the Government to scrap the requirement for people on terminal illness benefits to be reassessed every three years, and to accept the prognoses of medical practitioners.

A DWP spokeswoman 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 fasttrack 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 as soon as possible so more people can get the vital support they need.