Yesterday I presented my bill on improving access to benefits for terminally ill people.
At the moment, in order to access benefits quickly, people with unpredictable terminal conditions like Motor Neurone Disease are having to prove that they have six months or less left to live; and they risk losing their benefits altogether if they live longer than three years. My Welfare (Terminal Illness) Bill calls on the government to address these issues, and respond to the review into benefits for the terminally ill it launched last July.
A long and frustrating year has passed since the government announced its review into access to benefits for terminally ill people. It’s heartbreaking that people living with terminal illnesses and their families are forced to spend their final months together wrestling with the complexities of a deeply unfair benefits system. The ‘six month rule’ and three year award are cruel and need to be scrapped. I hope my bill can spur the government into action.
It’s an issue which cuts to the core of the moral purpose of our social security system, and the values of the society we want to live in.
Here’s the Hansard transcript of my speech yesterday:
I beg to move,
That leave be given to bring in a Bill to make provision about terminally ill people in the welfare system. The aim of this Bill is to encourage the Government to address the failures of the special rules for terminal illness, which do not fast-track some terminally ill people for benefits, and to make it easier for terminally people to access the benefits that they need. In particular, it addresses the need for urgent action to reform two aspects of the special-rules guidelines that are a source of distress and difficulty for people living with terminal illness. They are the six-month rule which, under section 82 of the Welfare Reform Act 2012, obligates someone to provide medical proof that they have six months or less to live so that they can access benefits quickly and at a higher rate; and the three-year award—a Department for Work and Pensions guideline forces terminally ill people to reapply for benefits if they live longer than three years after the benefit is awarded. As I hope to outline clearly, those two deeply unfair rules are the source of much distress and anguish for individuals and families dealing with the shattering consequences of terminal illnesses such as motor neurone disease, terminal cancers, advanced lung and heart conditions and a range of neurological conditions, which are equally affected.
I want to begin by paying tribute to all the campaigners and charities who have campaigned so tirelessly for a change in legislation, particularly the Motor Neurone Disease Association and Marie Curie, which collaborated with the all-party parliamentary group for terminal illness on its report “Six months to live?”, published last year. I am really grateful that the APPG’s chair, the hon. Member for Inverness, Nairn, Badenoch and Strathspey (Drew Hendry), is co-sponsoring my Bill. I would like to thank some of the other charities that have campaigned on this, including the British Lung Foundation, Sue Ryder, Macmillan and St David’s Hospice in Newport.
I also want to pay tribute to my friend Madeleine Moon, the former Member 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. Madeleine cared for her late husband, Steve, who died from motor neurone disease in 2015, and dealt at first hand with 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 this Bill being brought forward today, and I have no doubt that the pressure that Madeleine and other campaigners exerted urged the Government to announce a review in July 2019.
We are now over a year on from the review being launched, and there is still no official news from the Government. However, having spoken to the Secretary of State yesterday, I know that an update is near. I appreciate that there have been some unforeseen disruptions, and the review was paused during the covid-19 pandemic, but in the time that has passed since the review was announced, more than 2,000 people will have died from motor neurone disease alone. Tragically, many of those individuals could have spent the last months of their life struggling to access the benefits that they desperately need.
The special rules for terminal illness claims process is intended to enable people who are terminally ill to access benefits rapidly without going through the standard application process. A claim under the special rules requires a person’s doctor, consultant or specialist nurse to submit a DS1500 form stating that the person is likely to die within six months. That forces people who have unpredictable terminal illnesses 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.
Statistics available for the personal independence payment, which is just one of the benefits impacted by the legislation, illustrate the human cost of the flaw in the system. Between 2013 and 2018, 74,000 PIP claimants died within six months of making their claim. However, around 10% of those people—nearly 8,000—saw their claims disallowed by the Department for Work and Pensions, including more than 1,000 who claimed under the special rules and 3,680 who died within three months of their application being disallowed. Last year alone, 1,820 PIP claimants died within six months of registering a claim that was disallowed at the initial decision.
As things stand, only 50% of the people diagnosed with motor neurone disease claim personal independence payment under special rules because of the six-month rule. It is unfair to ask some people with terminal illnesses to apply through the normal rules because they might have a slightly longer life expectancy than others, or because it is not possible to accurately predict that they are in the last six months of life. That is especially true for inherently unpredictable conditions such as motor neurone, where the rate of disease progression varies from case to case and doctors cannot give a precise prognosis of life expectancy. That is true for other conditions. For example, people with chronic obstructive pulmonary disease can experience sudden and potentially fatal worsening of their condition, which is often brought on by infections. Research from Marie Curie showed that the accuracy of prognostic estimates for terminally ill patients in the UK varies significantly, from 23% to 78%. This failing system must be changed to allow for a sensible degree of flexibility, and that means bringing an end to the six-month rule.
It is not just campaigners who are calling for an end to the rule. Earlier this month, the High Court in Northern Ireland ruled that the six-month limit was discriminatory and “manifestly without reasonable” justification. As the MND Association, Sue Ryder and other charities have repeatedly emphasised, clinical guidance should be the starting point for benefit eligibility criteria for people with a terminal illness. They ask that a medical practitioner or clinical nurse make a clinical judgment that the person has a progressive disease that can reasonably be expected to cause death.
The unpredictability of terminal illnesses is the important reason why the separate but related three-year award needs to go. It is a clear anomaly that terminally ill benefit claimants whose condition has no prospect of improvement are eligible for shorter awards through the special rules than those who claim through the standard process. For example, ESA support group claimants with progressive conditions are entitled to the severe conditions exemption, giving them a lifetime award, while higher-rate PIP claimants can qualify for an ongoing award with a light-touch review at the end of the 10-year point. However, claimants using the special rules process are not able or eligible to receive either of those longer awards and receive a maximum three-year award. Emma Saysell of St David’s hospice in Newport rightly highlights that many people who have reached this point are nothing like they were when the benefit was first awarded and will never be any better than they are at that point. It is a cruel, absurd and disturbing injustice that people who are extremely ill, including some who are paralysed, ventilated or unable to speak, are receiving letters telling them benefits will stop unless they make a new claim.
Last month, at Work and Pensions questions the Minister said that both he and the Secretary of State would make changes to the status quo shortly. I obviously welcome that indication, and I hope “shortly” means very soon indeed—
And I think it probably does mean that from the Minister’s indication.
In his comments, the Minister also cited three areas for potential changes: the six-month rule, improving consistency in the system and raising awareness to ensure that people know what is available to them through the special rules. I agree with Macmillan that any reform of the special rules should be accompanied by a renewed programme of engagement with clinicians to ensure they are properly supported to implement them. I also hope we can address the issue of non-medically trained assessors challenging doctors.
The Bill is not a money Bill, but it does call again on the Government to look at changes that can and should be made. In Scotland, which has some devolved powers in this area, the Scottish Parliament passed the Social Security (Scotland) Act in 2018, thus removing the six-month restriction. The changes in Scotland will provide an indefinite award to claimants under the special rules, rather than a maximum of three years.
In 21st century Britain we cannot tolerate a situation where our most vulnerable citizens and their families are forced to spend their final months together wrestling with the complexities of an obstructive benefits system. In a recent MND meeting in Parliament, a daughter quoted her father as saying:
“It was degrading to feel that I had to beg for financial support from a system I had paid into most of my life. I felt abandoned and reduced to a number.”
The word “terminal” should be enough. It should not be about time, as no one can guarantee how long the terminally ill will live, regardless of their prognosis. The criteria for the terminally ill need to change before more people suffer at the hands of this system.
As Madeleine Moon said so powerfully in a speech in this place back in 2018 when she was an MP:
“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.”
I ask the Government to look at this matter again: to publish the details of the review and consider making suitable provisions to ensure that our welfare system works for the people it was built to serve in their time of need.
Question put and agreed to.
That Jessica Morden, Peter Aldous, Drew Hendry, Hywel Williams, Dr James Davies, Tonia Antoniazzi, Chris Evans, Carolyn Harris, Judith Cummins, Matt Western, Nick Smith and Mark Tami present the Bill.
Jessica Morden accordingly presented the Bill.
Bill read the First time; to be read a Second time on Friday 27 November, and to be printed (Bill 169).