Employment Rights: Terminal Illness

Lee Barron Excerpts

Wednesday 18th December 2024 Westminster Hall

[Lee Barron (Corby and East Northamptonshire) (Lab)]

I beg to move,

That this House has considered the employment rights of people with a terminal illness.

It is a pleasure to serve under your chairmanship, Sir Edward.

For some time, the fundamental ask of this campaign has been the right of working people who have been diagnosed with a terminal illness not to face the sack. We have spoken a lot about terminal illness over the last few weeks in this place, and I do not want us to lose momentum. We now know the legal definition of a terminal diagnosis; it is life expectancy not foreseen beyond a six-month period. Our campaign aims to protect that period of employment. We protect the period of employment at the start of life—an employer cannot sack a pregnant worker. What we are saying is that they should not be able to sack a worker who has received a terminal diagnosis.

I want to declare an interest: before I got elected, I was the midlands regional secretary for the Trades Union Congress, and one of the campaigns I worked on was called the Dying to Work campaign. The campaign was about people with a terminal illness in the world of work. We found that some employers would dismiss a worker with a terminal illness based on the grounds of capability—the bulk of employers would not dream of doing so—and we wanted to protect workers during that period, so we developed a voluntary charter that employers could sign up to that would protect workers from being dismissed because of their condition and protect their freedom to choose whether to keep working, reduce their hours or step away all together.

We put the choice into the hands of the individual. The only time that that choice is taken away from the individual is if an employer wants to take that choice for them by dismissing them from work due to their diagnosis. The charter protects employees’ benefits, such as death in service payments, protects workers’ access to a supportive and understanding workplace, and gives terminally ill workers the freedom to make the choices that are right for them without the extra stress and worry. We launched that charter in 2016, and it now protects over 1.5 million working people in this country, because employers have signed up.

[Gareth Snell (Stoke-on-Trent Central) (Lab/Co-op)]

I thank my hon. Friend for the work that he has done on the campaign across the midlands and across the country. I was very proud to support it when I was last in this place. The sheer volume of workers who are now protected is testament to my hon. Friend’s hard work and his ability to tell such a compelling story. Could he enlighten me on whether the House of Commons, the House of Lords and the various Government Departments, which are huge employers, have signed up to the campaign? If they have not, could I extend a hand of friendship to him to help him ensure that they sign up as soon as possible?

[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.

[Sir Edward Leigh (in the Chair)]

Order. I remind Members that if they wish to speak, they must bob.

--- Later in debate ---

[Lee Barron]

I thank everybody for coming to the debate. I do not see this as the end of something; I do not see this a 90-minute debate where we just say, “That’s good enough.” I see this as the start of a conversation that I think we need to have. I welcome the fact that the Government People Group is looking into this and I know it has had those discussions. That is a step in the right direction, but ultimately we need to ensure that people cannot slip through where there are gaps—and currently they can. That is where the conversation needs to continue. I think this debate has started that conversation and put us in a good place to continue it so, once again, many thanks indeed.

Question put and agreed to.

Resolved,

That this House has considered the employment rights of people with a terminal illness.