Belfast Telegraph

Terminally ill in Northern Ireland face delays in vital benefits

By Mark Bain

Hundreds of terminally ill people in Northern Ireland are facing delays in Personal Independence Payments (PIP) due to special rules on eligibility set by Department for Communities guidelines.

And 60 health and social care experts from across the region want a change in the definition of terminal illness, which they say currently excludes many legitimate claimants.

In a letter to the Belfast Telegraph today, the experts call for a definition based on clinical judgment - rather than a time-bound estimation of life expectancy - to be adopted.

PIP currently has special rules for terminal illness which allow eligible applicants to apply without the need for face-to-face meetings - but it's only available to people with a prognosis of six months or less.

Marie Curie NI said that is denying vital support to those most in need.

Joan McEwan, head of policy at Marie Curie NI, said: "Many terminal illnesses are very unpredictable, so a patient may be expected to live for longer but die within six months because of a sudden decline.

"We believe the existing definition creates a distressing situation - putting clinicians in a conflicting position which demands a greater degree of accuracy in predicting life expectancy than is possible. It also denies people the best quality of life in the time they have left.

"Our fears are shared by health and social care experts from across Northern Ireland. It is now imperative that policy makers, whether in Northern Ireland or Westminster, listen to these concerns and take action. The government in Scotland is leading the way in creating a fairer and more compassionate system. We must follow suit."

Dr Joan Regan, co-medical director at Marie Curie, added: "I have seen the devastating toll a terminal illness can have on patients and families. We try to support people to enjoy the best quality of life during the time they have left, and quick access to PIP undoubtedly helps.

"People living with a terminal illness have enough to deal with without facing intrusive PIP assessments and delays in accessing their payments."

And Dr Michael Crawford, a GP in Hillsborough Medical Practice who signed the letter, said: "On occasions as a family doctor I am asked to provide 'confirmation' that a patient is in the terminal phase of their life and 'expected' to die within six months.

"Unfortunately such a response is not always possible."

Currently over 90% of people accessing PIP via the terminal illness rules have cancer, despite the condition accounting for less than a third of deaths in Northern Ireland.

Many other terminal illnesses have a more unpredictable life expectancy, including Motor Neurone Disease (MND) and chronic heart failure.

SDLP MLA Nichola Mallon is backing the experts in their call.

She said: "No one with a terminal illness should be spending the little time they have left filling out application forms, enduring an intrusive face-to-face assessment and waiting up to three months before they know whether they are entitled. It's cruel."

A Department for Communities spokesperson said it "recognises that this is a very sensitive and emotive matter".

"In Northern Ireland, social security law is normally maintained in parity with Great Britain (Department for Work and Pensions) unless the Executive and the Assembly determines otherwise," they added.

Belfast Telegraph

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