Welfare (Terminal Illness)

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.

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: