Employment Rights: Terminal Illness

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.

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?

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.

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.

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.

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

It is a real pleasure to speak in this debate. I commend the hon. Member for Corby and East Northamptonshire (Lee Barron) for giving us the opportunity to participate, and congratulate him on his introduction, which showed an understanding of what the issue means to his constituents. I hope I will convey that too.

This is an opportunity to highlight the much-needed help and support that the Government must facilitate. I am pleased to see the Minister and the shadow Minister, the hon. Member for Mid Buckinghamshire (Greg Smith), in their places, and look forward to their contributions. I believe that the Minister understands the necessity for this debate, and I understand that the Government are going to make changes; the Minister will respond to that later.

This is one of those bread and butter issues, which I love because they make a difference to people’s lives. There are important constitutional and foreign policy issues but these matters are the ones we deal with every week in our offices. These are not just bread and butter issues; they are literally life-and-death issues, and the hon. Gentleman has set that scene so well.

I want to advocate for the tremendous work of the wonderful charity, Marie Curie. We all deal with many charities in our constituencies, as others will mention. I have lots in my constituency, but I am a supporter of Marie Curie in word and deed. I am not better than anybody else—I never claim to be and I never will be—but I support that charity’s work financially and in other ways. I have been to the Marie Curie centre in Knock, Belfast, where the staff provide real help to each person and their family. That must be an incredibly hard job and every Marie Curie nurse deserves credit.

I am thankful for the support that Marie Curie gives to patients and families in the throes of cancer journeys. Those are journeys that I and constituents have dealt with over the years. I am also grateful for the information that Marie Curie consolidates and provides us with to enable our fuller understanding. Information from those in the thick of funding and practical issues is invaluable. We need to dig deep individually and collectively within our constituencies. When loved ones pass away, they often leave something in their will to Marie Curie or other charities, which helps them do more for other people on life’s last journey.

A number of employers might either not have a policy or simply be unaware, for some reason, of the need to be more empathetic with people who find themselves in such a horrendously difficult position. The advantage of a debate such as this one, secured by the hon. Member for Corby and East Northamptonshire (Lee Barron) and supported by all hon. Members, is that it can raise awareness and hopefully bring action from Government Departments and employers, which need to take action and show support.

I thank my hon. Friend for his intervention; I do not want to give him a big head, but his interventions often capture the focus of a debate in one sentence. If the companies have forgotten or are unaware, it is time that they were aware. The question is how we can make that happen.

As I say, only 44% of organisations and workplaces have policies in place for staff with a terminal illness, so if a worker with a terminal illness loses their job, they lose their income. The impact could not be any more real: they may lose any death in service payments that they have earned through their lifetime of work, because those are payable only to those who die while still in employment. The hon. Member for Corby and East Northamptonshire referred to the lady who stayed at work for her social circle of friends. Perhaps it helped her—I am sorry to say this—to ensure that when she passed away she had the payments that she should have had.

I agree with the Marie Curie charity that there is therefore a need for strengthened employment rights for people with a terminal illness, alongside an improved safety net to provide safety or support through our welfare system. When the Minister responds, I am sure that he or his civil servants and staff will have some figures from Marie Curie; if there has not been engagement with the organisation, I suggest that there should be.

I commend the hon. Member for Corby and East Northamptonshire (Lee Barron) for raising this important issue. Does my hon. Friend agree that there also needs to be workplace protection for the parents of children who have been given a terminal diagnosis? When a child is given a terminal diagnosis in such tragic circumstances, parents are worried because they have to leave their work to care for their children. Does he agree that there needs to be better protection for them?

I thank my hon. Friend. Others might not have thought about that issue, because there are always the two adults—the mum and dad who are in a relationship—and it is their child, but if their child has a terminal illness, how does that impact them in work? They need to be there to take their child to the hospital, and to be there for their child in the last days of their life. I know that the Minister understands those issues; perhaps he can give us an encouraging answer to these questions.

Life is tough for families in full-time employment, never mind those with reduced income and greater costs. Changes must be made to universal credit— I know that that is not the Minister’s responsibility—to allow those in full-time employment to access help and support for their care and time off work. All my staff members understand the benefits system very well, but I am fortunate to have one particular staff member who spends every day of her five and a half days a week—the half day is probably voluntary, because she is a lady with compassion and understanding—working on benefits. As elected representatives, we try to offer all we can to our constituents. All Members do. That lady fills out universal credit applications, personal independence payment applications, employment and support allowance applications or, probably in most cases, attendance allowance applications, although sometimes it is for families with small children.

These are really difficult times. I do the forms myself; I am not better than anybody else. There is a box on the second or third page that asks whether the applicant has a terminal illness. When you tick that box, it moves you into a different system. I have to be fair to the Department: when that box is ticked, the Department moves immediately. I know that from cases that we have done through my office, and other Members will confirm it when they get their chance to speak. An urgency is put into the process and it quickly moves on.

It is a pleasure to serve under your chairship, Sir Edward. I thank my hon. Friend the Member for Corby and East Northamptonshire (Lee Barron) for securing this important debate on the employment rights of people with a terminal illness. I pay tribute to his tireless advocacy on behalf of workers facing unimaginable challenges.

Receiving a terminal diagnosis is one of the most devastating things that can happen to a person. In that moment, the focus should be on spending precious time with loved ones, seeking medical care and living the life you have left. As a humanist, I believe we have only one life, so a good life and a good death are very important to me.

Unfortunately, for too many people a terminal diagnosis is compounded by the fear of losing their livelihood and the security that employment provides. As things stand, it is still legal in this country to dismiss someone with a terminal illness on grounds of capability. That is not only deeply unjust, but fundamentally inhumane. The last thing that anyone with a terminal illness should have to worry about is how they will keep a roof over their head or provide for their family. People’s lives do not end at the moment they get a terminal diagnosis. They are still mums, dads, colleagues and breadwinners.

Many people with a terminal illness live longer than six months. I associate myself with the remarks of my hon. Friend the Member for Blyth and Ashington (Ian Lavery). I also acknowledge the Dying to Work campaign, which has already secured protections for more than 1.5 million workers through its voluntary charter. The charter, developed in partnership with the TUC, encourages employers to commit to supporting workers with a terminal illness, ensuring that they have the choice to remain in work for as long as they wish, without the fear of dismissal. The campaign’s success demonstrates that compassion and practicality can go hand in hand in the workplace.

I thank my hon. Friend the Member for Corby and East Northamptonshire (Lee Barron) for securing this important debate.

As a proud trade unionist woman from the east midlands, I am hugely proud to speak in this debate. The campaign to give terminally ill people rights in the workplace was kick-started with the incredible voice and determination of an east midlands GMB member Jacci Woodcock, who in June 2012 was sadly diagnosed with terminal breast cancer. It became apparent very early on to Jacci that her workplace was not going to support her. Jacci drove this campaign and was quoted as saying:

“I happily accept my fate, but I am not happy that other workers who don’t have my vision, tenacity and strength suffer at the hands of unscrupulous employers.”

I had the honour of meeting Jacci in Nottinghamshire, when Nottinghamshire county council adopted the Dying to Work charter—something that I know has benefited many workers to this day.

Sadly, I have personally witnessed the trauma, anxiety and upset that is caused when a terminal illness is diagnosed. In times of such upheaval and distress, I am a strong advocate for those who are suffering to have options and be able to make choices. Some will want to stop working straightaway and are financially able to do so, but others will not or cannot. Some will receive a lot of comfort from being able to continue as normal a life as possible for as long as they can. Workers should be able to make that choice, and workplaces should be equipped and ready to support that. There are still far too many HR departments and bosses across the country who see terminal illness as a reason, based on capability, to end a person’s employment status.

But I say this must change. That is why, over 12 years ago, Jacci made that stand not only for her, but for others—for those who have not even been diagnosed yet, for those whose only contact with the real world was through their workplace, for those who have dedicated their whole life to a particular business or trade. I wish to thank Jacci and her family. I place it on the record that I will continue to campaign for that choice for those diagnosed with a terminal illness. Dignity in the workplace is a right. We here have a duty and a crucial role to make sure that that happens.

It is a pleasure to serve under your chairship, Sir Edward. I thank my hon. Friend the Member for Corby and East Northamptonshire (Lee Barron), whom I have known for a long time, for securing the debate.

I declare an interest: I am a member of the Justice Committee, a solicitor and a member of the GMB executive council. The GMB was instrumental in running the “Dying to Work” campaign, and the TUC subsequently adopted the charter. As of March 2024, over 1.5 million workers in the UK have employers who have committed to the charter, which requires employers to

“Review sick pay and sickness absence procedures and include a specific statement that they will not dismiss any person with a terminal diagnosis because of their condition”,

as well as take other steps to support the terminally ill employee at work.

There is very little employment law that deals with terminal illness, but we do have laws relating to disability discrimination and laws under which an employer has a duty to make reasonable adjustments for employees at work, and those laws will apply to employees who are terminally ill. The NHS defines a terminal illness as a health condition

“that you’ll most likely die from”.

Under the Equality Act 2010, people with disabilities are protected against discrimination at work. Disabilities are defined as any impairment that has a long-term and substantial adverse effect on the person’s ability to carry out “normal day-to-day activities”. Terminal illness will be classed as a disability, at least from the point where the illness begins to have an impact on the person’s ability to carry out day-to-day activities; so the Equality Act will give the employee the right not to be treated less favourably at work, and the right to reasonable adjustments to enable them to stay at work. People with cancer, HIV infection or multiple sclerosis will automatically be considered to have a disability, regardless of their symptoms. Correspondingly, anyone who is terminally ill should also be considered to have a disability regardless of their symptoms.