Terminally Ill People: Access to Benefits — House of Commons, 2021-02-22
Topic: Social Welfare
Jessica Elizabeth Morden (Labour, Centre-left): 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.