Employment Rights: Terminal Illness

Ian Lavery Excerpts

Wednesday 18th December 2024 Westminster Hall

[Lee Barron]

We managed to get the campaign promoted as best practice by the Department for Work and Pensions—meaning that if employers, through their disability awareness scheme, ever go to the Government in relation to how to treat workers with a terminal illness, they are always signposted to the campaign—but no Government Departments have signed up. However, I am aware that with the new Government coming in, those discussions are now taking place.

Although the progress made so far is commendable, it is not universal. That is why we have called this debate—so that we can the extend this right to all those who are ill. I want to recognise Richard Oliver, who is in the Public Gallery and who has been part of the campaign right from the outset; it is great that he has been able to join us today.

As I said, it is still legal in this country to sack a terminally ill worker on the grounds of capability. At a time when someone is dealing with a devastating diagnosis, they could also face the loss of their livelihood and their financial security. That is not acceptable. There has been significant discussion about dying with dignity recently, particularly relating to the Terminally Ill Adults (End of Life) Bill. Although that Bill has rightly captured our attention, I do not want us to lose momentum now that it has gone to Committee. These people are on a path—a journey, if we can call it that—and they should not have to worry about whether they will lose their job while they face that.

Most people will never have to think about the implications of working with a terminal diagnosis, and most employers would not dream of firing their terminally ill workers.

[Ian Lavery (Blyth and Ashington) (Lab)]

Big congratulations to my hon. Friend on the work he has done on this issue over many years. Does he agree that the six-month rule, which determines that a person is terminally ill—that they are dying and will not be here in six months—is too stressful? People need to get clarification from their doctor, in the most difficult circumstances, that they are going to die. I think that is absolutely stressful, and I speak with a personal situation in mind.

[Lee Barron]

One of the things that has always got me is the number of personal stories people tell about what they have faced. We cannot remove those stories and those situations. I cannot imagine the distress, and I do not know if anybody else in here can. All I know is that I have met people who have gone through this experience, and that should never happen in our society. I have always said that the compassion and values that we hold as a society should not end at the front door of the workplace; they should be part and parcel of the workplace. That is why it is so important that we discuss issues like this.

Most people will never have to think about the implications of working with a terminal diagnosis. Those who receive a terminal diagnosis and their families should not have to worry about paying the bills or about their job, on top of everything else. The reality is that not all terminal illnesses are treated equally under the law. The prior part of employment, when people fall under the Disability Discrimination Act 1995, is protected. It is when they get a terminal diagnosis, and when capability comes into it, that they are not protected. That is the part that needs to be protected; that is the loophole in the law.

I met a lady who worked for Nottinghamshire county council. The council signed up to the Dying to Work charter on a Thursday, although she had passed away on the Friday of the previous week. She had decided that she wanted to stay at work because that was where her friends—her social outlet—were; she did not want to sit at home, bouncing off the walls. She took that decision for herself, and her employer did the right thing by saying, “We’ll give you the freedom as far as that decision is concerned.”

Many people are proud of the work they do. They often wake up early to work long, hard days to provide for themselves and their loved ones. They greet and talk to their colleagues, who they see almost every day. They deserve dignity and respect, and they deserve our support.

Some terminally ill people may want to continue working as long as they can, finding peace and distraction in their professional lives. Others may decide to step away, prioritising their family and themselves. While the Government are rightly levelling up workers’ rights, we must seize the moment to ensure those with terminal illness are treated with fairness, compassion and the respect they deserve in the workplace. Protections like those enshrined in our Dying to Work charter should be universal, not optional. Legislation must be introduced to best protect vulnerable people in our workplaces. In the meantime, it is essential that we persuade as many employers as possible, including Government Departments, to sign up to the Dying to Work charter to protect as many workers as possible. Dignity at work is not a privilege; it is a right.

Some organisations do have death in service payments, but if a person is fired, they and their family are no longer entitled to any of those benefits. Every worker deserves to know that they will not be forced out of their job when they need it most. People at the end of their life should be able to decide whether they want to continue to work.

I was delighted to hear that the Government will be implementing the Dying to Work charter as best practice in Departments, but we need to go further. We need to review the Equality Act 2010 so that there are not gaps in rights for those who are terminally ill. We need to protect people’s employment when they are ill. We need to give the most vulnerable people in our society the right to choose and the right to dignity. We need to implement new legislation to protect these workers.

Protecting employment for those who are terminally ill means that they can focus on what truly matters, whether that is continuing to contribute to work or stepping away to spend their remaining time with their loved ones. Ultimately, that choice should be theirs and theirs alone, and if we need to we should protect that choice in law.

--- Later in debate ---

[Ian Lavery (Blyth and Ashington) (Lab)]

It is a pleasure, as ever, to serve under your chairmanship, Sir Edward. I congratulate my hon. Friend the Member for Corby and East Northamptonshire (Lee Barron) on bringing this extremely important debate to the House and on his work over the years before he became an MP, particularly in the midlands, which was exemplary, to say the least.

Sir Edward, can you imagine what it is like when the consultant tells you—perhaps you are at work and you get a phone call—that you have got terminal cancer? Your life flashes before you. It is horrendous, and not only for you; your family, your workmates and everyone else is completely devastated. Yet here in the UK employers still have the ability to decide whether to dismiss somebody under those circumstances, on the basis of capability, or allow them to remain in employment. Quite frankly, it is appalling. It does not befit this wonderful country that we live in.

When they get telt they have terminal cancer or a terminal illness, and are in work, different people have different views, but many have not got different options, because it is down to employers. There are good employers and bad employers. That has always been the case and it always will be. That is why it should be enshrined in law that people with a terminal condition cannot be dismissed on grounds of capability in any way, shape or form.

Different people are different. Some people want to work, because they see it as a distraction from their condition. Some people have a condition that makes it impossible for them to work. Some people want to fight their grave illness; others want to lie under the duvet and sadly spend the rest of their days in the house, not in work. But people need to have options, and people need to be supported by the Government.

I can give personal testimony, because I have experienced this situation only this year. A very close relative—it was my brother, actually—was in this position, and it was terrible. For pension reasons, to continue in employment and to receive other support, he had to prove to his employer that he really was terminally ill. For someone to do that, they have to get a letter from their GP to prove that they are going to die. The definition of “terminally ill” is that someone will die within six months, so he and his family had to seek a letter saying that he was not going to be around in six months. That is absolute stress of the highest level; it is a pre-death certificate.

Can it be right that working people are tret in this way? You have got enough stress when you have been telt—by the consultant, the doctor, the hospital, the GP—that you have not got that much time left. Some people want to get on and put their affairs in order; others want to spend time with their family. But people should have the right to work, and the right to continue in employment, if they can.

Other speakers have mentioned financial issues. Of course, lots of people who get a terminal illness while they are in work have family, including kids, as well as mortgages, cars and loans, and they cannot just have their financial position severed because of bad employers. I think it was my hon. Friend the Member for Corby and East Northamptonshire who said that dignity at work is not a privilege, but a right. I agree. Basically, I think that the Government should consider the position of terminally ill individuals in the workplace.

With regard to needing absolute proof that you are dying, I am not sure. Imagine having to ask the doctor, “Can you put it in writing that I’m not going to be here?” It is dreadful. That is something we need to look at. I think it is right that the Government should enshrine in legislation that employers cannot dismiss anyone on grounds of capability if they can prove that they have a terminal illness, whether that proof is a letter saying they have six months to live—a pre-death certificate—or not. The employer should recognise that proof and it should be up to the individual worker to decide which of the options available to them to take.

It is commendable that 1.5 million workers and a whole number of companies have signed up to the Dying to Work campaign, but I think we have about 44 million workers in this country, and we have good employers and bad employers. We need to take the choice away from the employers; we need to enshrine it in law and support people who face the most dreadful situation that could ever be imagined.