The benefits system for individuals living with terminal illnesses is in need of a major overhaul, affected families and end-of-life charities have said.
Across the UK, approximately 23,000 people who are diagnosed with a terminal illness will apply for support from the Department of Works and Pensions. Patients who have six months or less to live, according to their clinician, may access fast-tracked support and benefits under the Special Rules for Terminal Illness (SRTI). Eligibility is based on submission of a DS1500 form along with the individual’s application, which states that they’re likely to die within six months.
Initial benefits assessments are carried out on behalf of the DWP by the private contractors Capita, the Independent Assessment Services, and Maximus, and the DWP maintains that its disability assessors are experienced health professionals whose work is subject to constant quality evaluation.
Since 2013, the appeals process requires someone challenging an assessment to submit a written complaint within a month, known as a Mandatory Reconsideration. If unsuccessful, they can then take their appeal to a tribunal.
Though the DWP says that the Mandatory Reconsideration process was introduced to ensure people get their right decision for their case, most claimants feel the process is stressful, and doesn’t give people enough time to gather evidence for their appeal.
In the Carmarthenshire area, 2303 applied for benefits under the standard route, and 54 people applied under the special route for terminally ill individuals over the 2020-21 period, down from 78 who applied under the special rules over 2019-20.
End-of-life charities have stated that the process for applying under these special rules is “overly complex and stressful”, and that the timetable for reforms promised by the then Minister for Disabled People, Justin Tomlinson, of a new 12-month end-of-life definition in July was unclear. The proposed changes, he said, will take place across five benefits, including Disability Living Allowance and Personal Independence Payment over the next year “when parliamentary time allows”. Critics have also said that while the proposed amendments to the rules are welcome, they don’t go far enough to fix the issue.
There has been a call from concerned groups for the government to revoke the requirement on terminal illnesses benefits to be reconsidered every three years, and instead accept the prognoses given by medical professionals.
Dr Catherine Millington-Sanders, clinical lead for palliative and end of life care for the Royal College of GPs, said GPs “still face uncertainty when determining exactly how long someone has got to live”.
“There can be significant variation between the time of a terminal diagnosis and a person dying, and in order to provide individualised support, it makes little sense to have a rigidly set time cap to be a determining factor in which benefits a dying person is entitled to,” Dr Millington-Sanders said.
Over the past three year period, nearly 100 people in Britain that were denied end-of-life benefits died while waiting for the outcome to their Mandatory Reconsideration appeals, which was revealed when the BBC made a Freedom Of Information request.
The Marie-Curie charity said it has “serious concerns” regarding whether the DWP can see when dying people require support.
Dr Sam Royston, its director of policy and research, said if people were dying before their appeals were decided it was “highly likely that they were living with a long-term or terminal illness”.
“Many of these people should have received fast-track access to support,” he added.
Affected families have said it is “degrading” to require people to provide a form stating that they’ll die within six months and for employees of the DWP and their subcontractors to challenge a medical practitioner’s prognosis when they have signed the required form for patients. They say they want rules reform to acknowledge that a dying person’s health is not going to improve.
Madeleine Moon, former Labour MP for Bridgend whose husband Steve passed away from Motor Neuron 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. 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 that the current rules are wrong.”
Mrs Moon sponsored a bill in Parliament which proposed an overhaul to the system, and the bill received its first reading, but Parliamentary time ran out before she lost her seat.
A spokesperson for the DWP 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.”
