The government will carry out a review of a controversial “policy fudge” that is denying thousands of terminally ill people from claiming fast-track benefits.
Secretary of State for Work and Pensions Amber Rudd has said people with terminal illnesses deserve a “fresh and honest” evaluation of the way the welfare system supports them, announcing the review today.
Citing her own personal experience, the minister confirmed she has ordered the Department for Work and Pensions (DWP) to set up an “in-depth” analysis of how the benefits system supports people nearing the end of their lives.
The current system has come under heavy criticism from charities as being “unfit for purpose” for those with terminal conditions.
In a series of special reports HuffPost UK has revealed the anguish terminally ill people are facing trying to claim benefits due to an archaic rule that says they must have six months or less to live in order to access fast-track support.
We found that even those who have doctors letters showing they will die within six months are in some cases denied support by DWP officials.
Data obtained exclusively by HuffPost showed more than 17,000 people with terminal illnesses made claims for the benefit Universal Credit from 2016 to 2018 - raising fears gravely sick people are being forced to resort to foodbanks or dying before vital payments arrive.
Many charities, including Marie Curie, Macmillan and the Motor Neurone Disease Association, have campaigned for changes, saying the six month rule was introduced under a “made-up policy fudge” in 1990.
An inquiry by the All-Party Parliamentary Group on Terminal Illness, published last week, found the six month rule was “outdated, arbitrary and not based on clinical reality”.
Announcing the review, Work and Pensions Secretary Amber Rudd, said: “Having a life limiting illness or severe condition can cause unimaginable suffering for the patient and for their loved ones.
“Having seen it in my own family I know that the last thing you need is additional financial pressures or unnecessary assessments.
“So that’s why today I am beginning work on a fresh and honest evaluation of our benefits system so that I can be sure that people who are nearing the end of their life get the best possible support.”
She continued: “I hope that this comprehensive evaluation of how we treat those with severe conditions and terminal illnesses, will help ensure these vulnerable people get the support they need from our benefits system.”
The Work and Pensions Secretary recalled the death of her former husband, the Sunday Times critic AA Gill, as she promised to stop the benefits system leaving terminally ill patients facing “unnecessary hardship”.
The MP has also spoken previously about her father becoming blind in 1981 and how his lack of sight for 36 years affected his life and the lives of the family.
Under the current system people with a terminal illness can apply for their benefits application to be fast track and paid at a higher rate under a system of “Special Rules”.
In order to qualify, a doctor must fill out a special form, the DS1500, confirming the claimant has six months or less to live.
However charities say not all doctors understand the system or feel confident making the necessary diagnosis for their patients, and the rules are often seen as favouring those living with cancer when other illnesses can also limit life.
The DWP claims benefit processes have recently been made simpler for those living with the most severe or progressive conditions, moving them out of unnecessary reassessments.
However, the Work and Pensions Secretary wants to the DWP to look again to make sure these processes are working effectively and to see if more can be done to improve engagement between the DWP and terminally ill claimants.
The review will focus on three strands; hearing directly from claimants, gathering evidence on how other nations support the terminally ill, and reviewing the DWP’s current performance.
The secretary of state will visit the Macmillan Cancer Support Horizon Centre in Brighton today to begin conversations with stakeholders and the DWP will seek the views of patients, clinicians and charities.
Marie Curie welcomed the announcement of the review but said the government must act quickly to overhaul the system.
Matthew Reed, the charity’s chief executive, said: “The solution is a very simple one. It is one that the Scottish government has already taken on board in a new benefits law - that fast, easy access to benefits should be available to everyone a clinician says is terminally ill.
“People should not have to wait until a clinician thinks they only have six months left to live.”
He said the review must be “focused and quick” as time was crucial for dying people, adding: “Every day 10 people die while waiting for the benefits they need.”
The charities have called for doctors to take the final decision on what constitutes a terminal diagnosis rather than the strict definition that was introduced into law under the Welfare Reform Act.
“The core of our argument with the DWP is this legal definition of terminal illness was formed in 1990 and it’s been 29 years of medical advancements and our understanding of how people die has changed drastically,” Scott Sinclair, head of policy and public affairs at Marie Curie, told HuffPost UK last month.
“The DWP need to step into the 21st century with this because they are basing this system on a rule brought in in 1990 and actually at that time it had no clinical input – it was something MPs came up with basically.”
“Whether somebody with a terminal illness has six months to live or longer, their needs are the same – it cannot be right to deny them access to the financial support they need based on a ‘made up policy fudge’ invented decades ago,” Reed added.
Charities have also criticised the five week wait for a first payment under Universal Credit.
The DWP told HuffPost UK it is government policy for people with a diagnosed terminal illness and a doctor’s letter confirming they have less than six months to live to wait five weeks for a first Universal Credit payment.
Margaret Greenwood MP, Labour’s shadow work and pensions secretary, said: “It is truly shocking that the government is treating terminally ill people in this way.
“Universal Credit is failing the very people it should support. Someone who has less than six months to live should not have to cope with the additional stress of not knowing how they will manage financially.
“It is simply wrong that anyone has to wait five weeks for payment, let alone someone with a terminal illness. The policy is simply cruel.”
She said Labour would stop the roll-out of Universal Credit and “ensure our social security system is there to support any one of us when we need it”.