In Parliament last night I renewed the call on the government to overhaul the benefits system so that it treats dying people with dignity.
In 2019 the DWP announced a review into how terminally ill people access the benefits system – with current regulations stipulating that in order to access benefits quickly, terminally ill people must prove they have 6 months or less to live. Those who live for longer for than 3 years whilst claiming under the special rules for terminal illness also risk losing their entitlement to benefits altogether. Last summer I followed Madeleine Moon, the former MP for Bridgend, in bringing a bill to the House of Commons which aimed to commit the government to responding to the review, and implementing changes to a cruel and complex system.
19 months on from the DWP review, it’s high time the government stopped dragging their heels and provided a timeframe on changes to the law to scrap the 6 month and 3 year rules on access to benefits; replacing them with a clinician-led approach. As I said in the debate, dying people deserve to be treated with dignity by the benefits system. Nobody given the devastating news that their illness is terminal knows how long they have left—not their loved ones, not their doctor and not a DWP benefits assessor. However much time they have left should be spent living as well as they can for as long as they can, making memories with loved ones. It should not be spent worrying about money, filling in endless forms, being dragged to assessments and fighting for the support they need.
Here’s my speech from the debate in full:
I have brought this debate to the House tonight to urge the Government to announce the results of their review of how the benefits system treats the terminally ill. The review was announced over 19 months ago now, on 11 July 2019, in response to campaigning by charities Marie Curie, the Motor Neurone Disease Association and others. I pay tribute to those charities for all their work on this issue and their support for me in bringing forward my ten-minute rule Bill, the Welfare (Terminal Illness) Bill, last summer. I also thank individual campaigners like Mark Hughes, Dave Setters and so many others who have continued to make a compelling case for change. The same is true of my friend Madeleine Moon, the former MP for Bridgend, who did so much good work on this issue during her time as chair of the all-party group on motor neurone disease. She had first-hand experience of the mental and emotional toil that comes with supporting a loved one with terminal illness. The Bill she brought to the House on this issue in 2018 is the inspiration for the Bill that I brought forward last summer. I have no doubt that the pressure exerted by these and other extraordinary individuals and organisations was instrumental in pushing the Government into announcing the review in July 2019.
So on their behalf, I again call on the Government today to take urgent action on two elements of the special rules for terminal illness guidelines that are not fit for purpose: the six-month rule, which means that someone is obliged to provide medical proof that they have six months or less to live so that they can access benefits quickly, more sensitively and at a higher rate; and the three-year award, which forces terminally ill people to reapply for benefits in the minority of cases where they are lucky enough to live longer than three years after the benefit is awarded. The special rules for terminal illness process is intended to enable people who are terminally ill to access benefits such as the personal independence payment or universal credit rapidly at the highest level of payments without going through the standard application process. Claiming under the special rules requires the person’s doctor, consultant or specialist nurse to submit a DS1500 form stating that the person is reasonably likely to die within six months. That forces people who have unpredictable terminal illnesses such as motor neurone disease or those expected to live longer than six months to apply via the standard claims process, which involves filling in long forms, attending assessments, delays in payment, lower rates, and even meeting work coaches—all while waiting months for payments. Clearly, that is highly inappropriate for people who have been given the devastating news that their condition is terminal.
The six-month rule is flawed and urgently needs to change. The all-party group on terminal illness, chaired by the hon. Member for Inverness, Nairn, Badenoch and Strathspey (Drew Hendry), found in its 2019 report that it was outdated and arbitrary with no basis in clinical reality. This six-month hard deadline is too much to ask of carers and claimants. It creates a completely understandable resistance to applying, prompting the added pain of writing down the grim reality of daily life and the inevitable future darkness. It gives no hope, no joy in life in a world where hope and joy are often all that can keep you going. In the case of unpredictable illnesses like MND, heart and lung failure and many neurological conditions, it is all but impossible for clinicians to make an accurate prediction of life expectancy. It is little wonder that nearly a third of clinicians told the all-party group that they have never signed a DS1500 form for a patient with a non-cancer condition. That means that patients like Simon, who was diagnosed with MND in December 2020, are not able to access the special rules. His wife Nichola told the MND Association:
“The doctor said that the DS1500 was designed for cancer patients…He looked at Simon and said ‘you won’t be dead in six months’. We had to complete the whole form and apply under the standard rules. It’s so long winded, so time consuming because you just don’t think about how long you spend on helping him get dressed etc. People need that support…often it feels like you’re banging your head against the wall.”
This unpredictability is why the three-year award also needs to change. Half of all people with motor neurone disease, for example, die within two years of being diagnosed, while only around 10% live for more than five years, but there is no reliable way for doctors to determine who that 10% will be, and, as with many progressive illnesses, their condition has no prospect of improvement and will only deteriorate further as time goes on. Emma Saysell, from the wonderful St David’s Hospice in Newport, tells me it is seeing more and more cases of cancer patients having to reapply for benefits with the DS1500 after three years. That comes in part due to improvements that have been made in palliative treatment, but while patients are living longer, they are still living with a terminal illness.
One particular example St David’s presented to me was of a lady in her mid-40s diagnosed with advanced breast cancer. The lady’s prognosis at diagnosis was very poor, and she had two teenage children. It was quite right to submit the DS1500 at diagnosis. Her disease is still progressing, but due to the palliative chemotherapy she has received, the process has been slowed, and she has now lived longer than three years. She has recently had to reapply for all her benefits due to the three-year rule, which has been hugely stressful for her and her family.
It is a clear anomaly that terminally ill people are awarded benefits for only three years. Employment and support allowance claimants with progressive conditions are entitled to the severe conditions exemption, meaning that they do not have to repeat work capability assessments, while higher-rate PIP claimants can qualify for an ongoing award, with a light-touch review after the 10-year point. It is cruel and absurd that people living with a lifelong condition are entitled to a 10-year or lifetime award, while those with terminal illnesses have been told they must reapply for benefits or risk losing them after just three years. Those who do happen to live longer than three years tell me they feel they are being punished by the system for living too long.
It is now seven months to the day since I presented my ten-minute rule Bill, and more than 19 months since the then Secretary of State, Amber Rudd, announced a review of how the benefits system treats terminally ill people. In all that time, we have had no official word from the Government on when they intend to bring forward these vital and long-awaited changes to the benefit system.
I thank my hon. Friend for that contribution, and he reads my mind—I am just about to come to that section of my speech. This is an issue across the whole UK, and the devolved Governments of Scotland and Northern Ireland appear to be treating it as a higher priority than the UK Government do. The Scottish Government passed a law to change the six-month rule for devolved benefits back in 2018, and that will be coming into force later this year. The Northern Ireland Assembly unanimously backed a motion to scrap it in October, and the Executive are proactively looking to fix this issue and deliver reform quickly. Why, then, is Westminster dragging its heels?
When I introduced my Bill last July, the Minister for Disabled People, Welfare and Work indicated that change would be coming shortly. He confirmed in the House on 19 October last year that the Government would be changing the six-month rule following their review. However, all this time later, we are still waiting to hear exactly what it would be changed to and when that change will be introduced. If Ministers have made up their minds that change is needed, why is there any need for further delay? Why the long silence?
Every day the Government postpone an announcement on the outcome of their review, more people are diagnosed with a terminal illness and risk being unable to get fast-track support from the benefits system if they cannot prove they have less than six months to live. These people are facing exactly the kind of inappropriate medical and work capability assessment that the special rules for terminal illness are supposed to exempt them from before they can access the support they need. They also face huge delays in getting payments. The average wait for a first personal independence payment is now 16 weeks, at a time when someone’s illness may mean that they cannot work and have no other money coming in. These are people like Alan, who has terminal pulmonary fibrosis, and who told Marie Curie:
“When I was diagnosed, I was told I would have five years’ life expectancy, as an average. Day to day, it affects everything I do. I can’t get dressed by myself. I can’t go to the shop by myself. I get very breathless doing anything. When I first applied for PIP, they were very dismissive. One of the things they did was, because I walked from a lift to a room, which was about 10 steps—on that basis they judged I could walk 200 yards. Because I was refused PIP, I couldn’t get hold of things like a parking card or a discount for train travel. So, I was in receipt of no benefits at all, although I do have a terminal illness, which gets worse year after year, month to month.”
For some, that delay will mean they die without receiving any support at all. Between April 2018 and October 2019, 2,140 people who applied for PIP—only one of the benefits affected by this rule—had their claim turned down under the normal rules only to die within six months of making their claim. Many of them will have been terminally ill people unable to claim via the special rules because they could not prove they had six months to live.
Even when the DWP does accept a claim, that often comes too late. According to the DWP’s own figures, an average of 10 people die every day while waiting for a decision on their PIP claim. End-of-life charity Marie Curie estimates that that means more than 5,900 people have died waiting for a decision since the DWP announced its review. That is nearly 6,000 families put through needless distress and anguish, and more will face it every day because of a rule that the Government have already admitted needs to change.
That is families like Michelle’s. Her mum, who died aged 62 in 2018, was initially awarded zero points for PIP and told she was capable of working. She was hooked to a feeding tube 16 hours a day, seven days a week and weighed 32 kilograms when she died. She had several illnesses including Crohn’s, osteoporosis and terminal lung cancer, yet she was awarded nothing. Michelle took her mum’s case to a tribunal, but by the time the decision came back that her mother should be awarded maximum points for PIP, she had died. Michelle says: “This should have been money that my mum had to make her final days better. It should never have gone as far as a tribunal.”
Dying people deserve to be treated with dignity by the benefits system. Nobody given the devastating news that their illness is terminal knows how long they have left—not their loved ones, not their doctor and not a DWP benefits assessor. However much time they have left should be spent living as well as they can for as long as they can, making memories with loved ones. It should not be spent worrying about money, filling in endless forms, being dragged to assessments and fighting for the support they need. As Madeleine Moon said back in 2018, “The unknown time you have must not be spent worrying about accessing benefits or keeping a roof over your head; it must be spent in love, laughter, and taking the painful journey together with dignity and compassion.”
People living with terminal illness and their loved ones have been campaigning tirelessly for change for more than two years. Many of them will not have lived to see the change they have fought for: an end to the six-month and three-year rules and a change to the system to allow anyone who has received the devastating news from a clinician that they are terminally ill to get fast-tracked access to benefits via the special rules. The clinician’s judgment should be evidence enough.
We all understand that since the Government announced their review there have been unforeseen circumstances with covid-19, but people do not have time to wait further. For the past 19 months, they have been waiting in a frustrating limbo, told that change is coming but with no announcement in sight from Ministers. They, and the charities campaigning on their behalf, are understandably impatient with 19 months of warm words from the Government and promises that change is always coming soon. For many, soon is already too late and, with each day that passes, soon will be too late for many more.
I urge Ministers to do better than soon. Will the Minister give us a date today for when the outcome of the DWP review will be published, give the campaigners who have called for change some clarity and give us a timeline setting out when the Government will make the changes to the law, which they have already accepted are needed, without further delay?
You can read the full transcript of the debate and the minister’s response here.