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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.
Jim Shannon (Strangford) (DUP)
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.
I want to focus heavily on the recently published report, “Dying in Poverty 2024”. If hon. Members have not had the opportunity to read it, I suggest it may be worth a look. It looks at the financial insecurity faced by many people at the end of life. Research found that some 111,000 people each year die in poverty. Wow; I can hardly take in that figure, especially in this modern society—this wealthy Britain—that we live in. That figure needs to settle into all our minds. The report also found that working-age people are at much greater risk of dying in poverty: 28% of those who died in 2023 died in poverty, compared with 16% of pension-age people. Anyone who is not shocked by those figures must be unfeeling—they must not understand—but I believe that everyone in this room is as shocked as I am.
For that reason, a lot of workers with a terminal diagnosis decide that they must continue working for as long as they can. The hon. Member for Corby and East Northamptonshire referred to one lady who wanted to keep working right up until the end, because work was where her social group was, even though she would have found doing so incredibly difficult. Unfortunately, the experience of many workers is that their employer either is unsympathetic—I am sure that some are sympathetic—or puts up barriers to their continuing in work. A 2022 survey of human resources decision makers found that only 44% of organisations and workplaces have policies in place for staff with a terminal illness. If businesses do not have those policies in place, they should. They have to prepare for that eventuality and be able to help workers through the process.
Mr Gregory Campbell (East Londonderry) (DUP)
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.
Jim Shannon
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.
Carla Lockhart (Upper Bann) (DUP)
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?
Jim Shannon
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.
The hon. Member for Corby and East Northamptonshire highlighted in communication to Members that the purpose of this debate is clear:
“The last thing someone with a terminal diagnosis and their family should be worrying about at the end of their life is how they will be able to pay the bills.”
Wow. The Government should remove that equation for people. Many people’s key social networks exist at work, and I believe that those who are terminally ill should have the choice of when they finish work. That is what the debate is all about.
I agree wholeheartedly with the hon. Gentleman’s view. More than that, I will work with him and with the Government to achieve that—to simply do more for those with terminal cancer. Just because charities do such an incredible job of raising funds and caring, that does not absolve our Government and our Minister of their responsibility; I say that with fairness and with respect. It is our duty to ensure that we fulfil these obligations. We must do better.
Lizzi Collinge (Morecambe and Lunesdale) (Lab)
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.
The voluntary charter is laudable, but it is not enough. It is not right that the ability to work at the end of life depends on the good will of individual employers. Workers should not have to rely on luck to ensure that their rights are protected at the most vulnerable time of their life. The current patchwork approach creates inequality. Perhaps larger employers with more resources are more likely to sign up to the Dying to Work charter; perhaps smaller employers do not have the capacity or simply do not know about it. This disparity underscores the need for consistent, nationwide standards to ensure that no worker with a terminal illness is left behind.
Some may argue that mandatory protections could place an undue burden on businesses, particularly small and medium-sized enterprises. I think we can find a balance. Being offered reasonable adjustments, flexible working and the ability to work from home can enable terminally ill employees to continue contributing in ways that are meaningful for them and for their employer. Many employers already see the value of retaining experienced workers who want to stay engaged.
Let me share some statistics from my constituency of Morecambe and Lunesdale. According to recent figures, over 25% of the workforce in my area are employed in industries such as retail and hospitality, where job security is often already precarious. Those sectors also report higher levels of sickness, making the need for robust protections even more pressing. Additionally, local advocacy groups have highlighted that the financial strain of a terminal diagnosis can have a disproportionate impact on low-income families, with many struggling to take on the extra costs of a terminal diagnosis, particularly in the light of the recent cost of living crisis. The lived experience behind those numbers is a stark reminder of the urgency of the issue.
Ensuring that terminally ill workers in Morecambe and Lunesdale and across the country are protected from unfair dismissal is not just about individual dignity; it is about strengthening the social fabric of our communities. There is also a compelling economic case for action. Retaining employees with terminal illnesses can reduce turnover costs, maintain productivity and strengthen workplace morale by fostering a culture of compassion and respect. Even beyond those practical considerations, the moral imperative is clear. A just society does not abandon its citizens in their greatest time of need.
As policymakers, we must lead the way in ensuring that every worker facing a terminal diagnosis has the legal protection that they deserve. That includes the right to remain in employment, if they want, for as long as they wish; access to reasonable adjustments; and the reassurance that their job and their dignity are secure. I urge the Government to take inspiration from the Dying to Work charter and enshrine its principles in law. Let us send a clear message that terminal illness is not a reason to strip someone of their livelihood. Let us ensure that no worker faces the additional burden of financial insecurity or social isolation as they navigate the most challenging period of their life.
In closing, I want to reflect on the experience of those who have lived this reality. Work is not just a means of earning a living; it is often a source of identity, purpose and community. For those facing a terminal illness, having the choice to continue working or to leave should not be a luxury. It should be a right.
Michelle Welsh (Sherwood Forest) (Lab)
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.
Warinder Juss (Wolverhampton West) (Lab)
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.
Under the Equality Act, the employer must make reasonable adjustments so that disabled employees, including those who are terminally ill, can continue in their job if they wish. The employer may, for example, change the employee’s working hours and working patterns, reduce their workload, reallocate duties, grant time off for treatment and medical appointments, and allow working from home. An employer must consider an employee’s terminal illness and symptoms when deciding what reasonable adjustments should be made to retain them in employment, rather than dismiss them in accordance with a sickness absence policy.
A lot of workers with a terminal diagnosis will decide that they want to continue working for as long as they can because they need the financial security, or to avoid losing any death in service benefits, as my hon. Friend the Member for Corby and East Northamptonshire mentioned, or because they find that work is a helpful distraction from their illness. Parliament recently gave Second Reading to a Bill that would give people a choice to die with dignity. Surely we can give those who are dying the dignity of work for as long as they need it.
Laurence Turner (Birmingham Northfield) (Lab)
It is a pleasure to serve under your chairship, Sir Edward. I congratulate my hon. Friend the Member for Corby and East Northamptonshire (Lee Barron) on securing this important debate. I draw attention to my entry in the Register of Members’ Financial Interests and my membership of the GMB.
I add my thanks to midlands TUC for the work it has done for many years to promote and champion this campaign. I will also mention the work that the GMB midlands region has done in connection with the cause. Two names are on the record, and I echo the comments made by my hon. Friends the Members for Corby and East Northamptonshire and for Sherwood Forest (Michelle Welsh). I pay tribute to Jacci Woodcock, who struck the spark that lit the flame, and my friend of many years, Richard Oliver. It is a pleasure to see him in the Public Gallery. He has brought real passion and expertise to the cause.
We have heard today that there are weaknesses and gaps in the Equality Act. I hope that this is the subject of consensus across the House. When in 2022 the then Minister, the hon. Member for Mid Norfolk (George Freeman), responded for the Government go a debate on the Terminal Illness (Support and Rights) Bill, although he acknowledged that many workers who have a terminal illness are covered by the definition of disability under the Equality Act, he added:
“I say, ‘the overwhelming majority’, but one thing that we might want to look at offline, as it were, is trying to ensure that that is everybody”—[Official Report, 18 November 2022; Vol. 722, c. 1010.]
who is covered. We are still not in that place today. Although a terminally ill worker can in principle bring a case before an employment tribunal, in too many cases, sadly, there are obvious barriers to doing so. My hon. Friend the Member for Wolverhampton West (Warinder Juss) has already pointed out that there is very little case law in this area. Although in theory a posthumous employment tribunal case can be brought, in practice it rarely happens.
Although the definition of disability inherited from the Disability Discrimination Act 1995 was probably not written with terminal illness in mind, there are circumstances where a terminally ill worker who is discriminated against at work would not fall under the protections of the Act, but someone in the early and possibly asymptomatic stages of a terminal illness would fall into that category. So there is a strong and compelling case for revisiting the Equality Act, but there are steps that can be taken in the intervening period.
Section 22 of the Equality Act established powers to bring in regulations on matters to be taken into account when employers and other bodies make reasonable adjustments. If regulations were brought in for the purpose of establishing that it is reasonable to take certain steps to accommodate the needs of workers with a terminal illness, that would be a helpful and clarifying step, which would be welcomed by employers as well as workers who develop a terminal illness, because employers are looking for clear guidance in this important area.
Similarly, the Equality and Human Rights Commission statutory code of practice on employment is the consolidated set of statutory guidance on the application of the Equality Act in the workplace, but that code of practice has not been updated since 2011 and it does not clearly or explicitly cover or reference terminal illness at any point. Were that code updated to take account of the particular problems facing workers who have a terminal illness, that would also play a positive and constructive role. Tribunals must have regard to the guidance from the Government Equalities Office, now the Women and Equalities Unit, on matters to be taken into account in determining questions on the definition of disability. That code has not been updated since 2013, and it does not clearly cover matters relating to terminal illness. Some helpful clarification that could be introduced through that guidance. Nevertheless, some problems cannot be addressed unless and until the Equality Act itself is revisited. The point has already been made that workers who develop a specified illness—cancer, for example—automatically fall under the definition of disability, but people who develop a different terminal illness do not. There is a very strong case for revisiting the Equality Act in that regard.
It is welcome that the new Government have made commitments in the “Make Work Pay” document, which states:
“Terminally ill people deserve security and decency during the hardest period in their lives.”
The Government encourage employers and trade unions to negotiate and sign up to the Dying to Work charter, and will work with trade unions and others to ensure that workers diagnosed with a terminal illness are treated with respect and dignity and supported at work. We all look forward to hearing from the Minister about the progress that has been made on those commitments.
We have heard a lot in this Parliament about the importance of a good death and the steps that we need to take in all areas of public policy and law to ensure that people are entitled to and receive support and dignified treatment at the close of their day. That must apply in the field of work and employment as much as in the health service and in all the other respects that we have considered during very emotive and considered debates in this Parliament. It must be hoped that, in the course of the four or five years of this Parliament, real and meaningful progress will be made to extend the charter and other protections to the hundreds of thousands of people who will, sadly, fall ill with a terminal illness and need support at work.
Melanie Onn (Great Grimsby and Cleethorpes) (Lab)
It is a pleasure to serve under your chairmanship this morning, Sir Edward. I extend my congratulations to my hon. Friend the Member for Corby and East Northamptonshire (Lee Barron) on securing this important and timely debate on the Dying to Work campaign and all that it entails.
I want to highlight the work of the TUC, particularly in the east midlands, spearheaded by Richard Oliver of the GMB trade union. He was the first person to introduce me to the Dying to Work campaign and to Jacci Woodcock, a long-term champion of the campaign. I have met her in this place, at the Labour party conference, at the Labour party east midlands regional conference and on a number of other occasions. She has been absolutely tireless and should be proud that her work on the issue she brought to the attention of her trade union has made such a significant difference to so many people in this country. It went from being one person’s personal issue to making over 1.5 million people’s working lives easier in very difficult circumstances.
Jacci’s work continues to make a difference. Last Thursday in my constituency, I was delighted to join Rachel Harvey and Lesley Charlesworth-Brown, the chair and deputy CEO respectively of Saint Andrew’s Hospice, when they signed the Dying to Work charter. Having been made aware of it during my previous time as a Member of Parliament, they had considered it and had been implementing it in practice anyway, but they decided to formalise their commitment to their staff, reflecting the area of work they are all involved in, and demonstrate their support for the charter. On the practical impact that has had for their staff, they said it has put in place an additional level of reassurance and flexibility. It has also had an impact on their patients: those who are in hospice care facing the end of their life find it reassuring that those caring for them do not have to deal with workplace precarity, and the staff are able to focus their time and energy in the way that they want to.
St Andrew’s Hospice has a reputation not only as a care giver but as a caring employer, which says a huge amount about those leading the organisation. It also helps to spread the word further that employers are still continuing to sign up, and that the momentum is still there. I sincerely hope that by taking this step, St Andrew’s will lead the way and encourage more employers in my constituency and across the country to sign up to the charter and to continue to give support and reassurance to people in their final months.
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.
Clive Jones (Wokingham) (LD)
It is a pleasure to serve under your chairship, Sir Edward. I thank the hon. Member for Corby and East Northamptonshire (Lee Barron) for securing this debate and for all the campaigning that he has done on this issue for many years.
Around 900,000 people of working age live with cancer and each year 127,000 people of working age are diagnosed with cancer. Cancer charities, with the University of Loughborough and the Centre for Progressive Change—they have been particularly helpful to me in preparing for the debate, so I send them my deepest thanks—estimated earlier this year that upwards of 30,000 people are going through their cancer treatment on statutory sick pay, which offers them an income of just £23 a day. We are in a situation in which people do not receive adequate sick pay. Although that impacts millions of people with all types of illness, it is especially pronounced for those with a more advanced or terminal diagnosis, as Macmillan Cancer Support has told me. People are left with very serious concerns.
These types of cancers involve prolonged treatment, often leading to substantial additional costs. In 2023, Young Lives vs Cancer, whose representatives I met last week, found that young cancer patients and their families spend almost £700 extra a month following a cancer diagnosis. Reportedly, that figure has increased by 15% since 2017. Quite simply, there are financial costs that follow a cancer diagnosis. Young Lives vs Cancer research found that 96% of young cancer patients and their families had to pay extra for their travel. The average came to more than £250 a month, with £30 extra on childcare, £144 extra on food and £68 extra on energy every month, along with other costs. Higher costs coupled with an inadequate income can put people’s recovery at risk. In the case of a terminal diagnosis, it can cause financial hardship at the point that the person is receiving end of life care.
Anthony Nolan’s 2023 survey revealed that the cost of living issues were so severe for some patients that they cut back on food and avoided turning the heating on, and three in 10 people were unable to afford their rent or mortgage during the 12-month treatment period. Does the Minister agree with the Liberal Democrats that the current, broken rate of sick pay should be fixed, and that reform must be on the table as soon as the financial situation allows? Importantly, does he also agree that we should support small employers with statutory sick pay costs and consult them on the best way to do that?
Before I conclude, I want to address a key point about children and young people’s cancer. Although some may not know that they are terminal, the aggressive nature of cancers such as blood cancer, skin cancer and brain tumours means that the situation can change very quickly. Therefore, they may not have immediate access to things such as the special rules for terminal illness route for benefits, because they do not perfectly fit the criteria, which include things such as being on curative treatment or falling under the strict six-month definition of “terminal”. That leaves young patients liable to the three-month qualifying period for access to disability living allowance and personal independence payment, despite having a confirmed diagnosis. On top of that, application processing takes about 20 weeks, so some young people have passed away before their benefits have come through because of red tape. Perhaps the Minister is not aware of that, but how can the Government allow that state of affairs to continue? It really is time for change.
Why does having cancer for three months suddenly make it more real to the Department for Work and Pensions than it was at the moment of diagnosis? I would be grateful if the Minister met me and cancer charities to discuss that. It seems deeply cruel to allow this state of affairs, which prevailed under the Conservatives, to continue under the new Government.
Greg Smith (Mid Buckinghamshire) (Con)
It is a pleasure to serve under your chairmanship, Sir Edward. We have heard a good and powerful debate this morning. I thank the hon. Member for Corby and East Northamptonshire (Lee Barron) for securing and leading the debate. As he said, he has championed the Dying to Work campaign for many years, including in his role at the TUC in the midlands before his election to this place.
As we have heard from many hon. Members, the campaign was founded by Jacci Woodcock, a sales manager from Derbyshire, who was forced out of her job after being diagnosed with breast cancer in 2012, when she was given 12 months to live. Jacci was appointed a Member of the Order of the British Empire in the Queen’s birthday honours list in 2019, and I commend her hard work over the years.
As a result of Jacci’s work, many people have been protected from unfair dismissal and provided with invaluable support following the tragedy of a terminal diagnosis. It is clear from this debate, and more widely, that there is more to be done to support people with a terminal diagnosis. Being diagnosed with a terminal illness is often sudden and unexpected, meaning those with the diagnosis and their families are forced to adapt to the new reality with little or no notice. People often decline quickly and, by the time the family work out what support is available, their loved one is in desperate need of help or, in some cases, has tragically already passed away.
In other cases, despite the diagnosis, the person may have many months or even years left, and is willing and able to keep working, with some minor adaptations to their workplace arrangements. In my research for this debate, I found some startling statistics. According to the Chartered Institute of Personnel and Development, just a third of UK organisations have specific provision for those with a terminal illness, meaning they have no policy, guidance or line manager or awareness training. It appears that the hesitancy of so many Brits to discuss health and serious illness has created a stigma about raising this issue in the workplace. That means that employers and employees often have to make it up as they go along, rather than follow standardised guidance developed by experts in the field.
As the Dying to Work campaign highlights, terminally ill people often do not have time to adapt to the reasonable adjustments put in place by employers, and are often forced to undergo stressful HR procedures. There are many financial worries left behind for families, as other hon. Members have mentioned. Cancer Research UK projects that one third of Brits will be diagnosed with cancer in their working life. According to a Macmillan Cancer Support survey, 37% of cancer patients have experienced discrimination on return to work.
It is vital to end the employer lottery. Individuals are currently at the mercy of their employer far too much, and often do not know their rights or what support is available. As the population ages and treatment options improve, more and more Brits are going to be living and working with a terminal illness. At present, the legal position of terminally ill employees mainly depends on the written and verbal agreement between employee and employer.
There is little specific law covering terminal illness, when it is clearly going to become ever more present in society. I suggest one of the best ways to help people with a terminal illness is to improve the information available on diagnosis, and to encourage employers to develop best practice guidance and training, so that any employee diagnosed with a terminal illness can receive support as quickly as possible. That would avoid the situation where even compassionate employers are playing a game of catch up or having to make it up as they go along.
It is vital that people understand their rights under the Equality Act 2010, which makes it illegal to discriminate against people with a disability and legislates that employers must make reasonable adjustments so that employees can do their work. That would include flexible working hours, reduced workload, reallocation of duties, time off for treatment and, where appropriate, working from home. Employees must be made aware that they can and should make the most of sick leave, extended special and compassionate leave, annual leave and flexible working.
There is no benefit specifically designed to help people with a terminal illness, but special rules are in place to expedite access to benefits for those with less than 12 months to live. Previously, that was limited to those with less than six months to live; I am proud that the last Government extended that period to 12 months, which in turn has provided quicker access to benefits, higher payments for certain benefits and the avoidance of the need for a medical assessment. Those with a terminal illness can access benefits designed to help with the additional costs of disability and ill health, such as disability living allowance, personal independence payments and attendance allowance. For those with a disability or in ill health, there are also the benefits designed to act as income replacements, such as employment and support allowance and universal credit.
I will end by mentioning the employment rights of not just those with a terminal illness but those who care for them—the spouses, children, brothers and sisters forced to take time off work to care for a terminally ill loved one. I am proud that the previous Government passed the Carer’s Leave Act 2023, which created a new statutory right to carer’s leave that came into effect in April 2024.
Employees are now entitled to take one week of unpaid leave a year if they have caring responsibilities, and that leave entitlement is available from the first day of employment, with no qualifying period. On top of that, employees also have the right to reasonable time off if a dependant is ill or injured or if their care arrangements are disrupted. Carers are protected at work from discrimination by association, and the Equality Act 2010 protects those caring for disabled or elderly people from discrimination or harassment.
I am aware of previous attempts to introduce legislation to address the injustices that come with a terminal illness—most recently, a private Member’s Bill proposed in 2022 by the former Member for Stockton North. For a range of reasons, these past attempts have not succeeded but I am committed to working with right hon. and hon. Members across the House to get these issues back on the agenda and improve the lives of those who, tragically, have a diagnosis of terminal illness, to make sure that in their final months they are supported and cared for with the compassion that they deserve.
The Parliamentary Under-Secretary of State for Business and Trade (Justin Madders)
It is a pleasure to see you in the Chair this morning, Sir Edward. I start by referring to my entry in the Register of Members’ Financial Interests, including my membership of the Unite and GMB unions; obviously, there is a particular reference to the GMB from one of the leading proponents of the campaign.
I congratulate my hon. Friend the Member for Corby and East Northamptonshire (Lee Barron) on securing this important debate. We have been talking about death recently: the Second Reading of the Terminally Ill Adults (End of Life) Bill was an important moment in its own right and clearly raised a lot of interest across the country. It was also a wider discussion about how we approach the end of life as a society and as individuals—and indeed as employers, who are the subject of today’s debate. Today we are continuing the discussion about how we handle this important issue.
The private Member’s Bill proposed that only those with a terminal diagnosis who were expected to live for six months or less could come under its auspices, but there can be a considerable time between diagnosis and death. It is important that that time, however long it is, is considered carefully when it comes to how we better support people to live with dignity and fulfilment. Today’s debate has raised interesting points about how we best do that. My hon. Friend was right to say that the vast majority of employers would not dream of dismissing a terminally ill member of staff, but of course the Dying to Work campaign is a much broader look at how employers can support employees in that situation; the issue is not just the prohibition on dismissal.
We had contributions from a number of Back Benchers. As always, the hon. Member for Strangford (Jim Shannon) made a thoughtful contribution. He paid tribute to Marie Curie’s work to provide wider support for individuals in this situation. I understand that colleagues in the Department for Work and Pensions continue to engage with Marie Curie on the issue. He mentioned the “Dying in poverty” report, which I have not read, but will.
My hon. Friend the Member for Morecambe and Lunesdale (Lizzi Collinge) highlighted a number of measures that are already available—I will talk about those shortly—such as reasonable adjustments and flexible working, which enable those who want to carry on working to do so in a way that suits them. She made the important point that continuing to work is particularly important for people on lower incomes.
My hon. Friend the Member for Sherwood Forest (Michelle Welsh) paid tribute to the campaigner Jacci Woodcock; I echo her tribute, and those of all the other hon. Members who praised her work. Jacci Woodcock has brought the campaign to the attention of many parliamentarians over a number of years, and the fact that we are having this debate is a tribute to the work that she started all those years ago.
As I would have expected him to do, my hon. Friend the Member for Wolverhampton West (Warinder Juss) gave a thorough legal analysis of the protections available. He noted, as did a number of hon. Members, that there is a lack of direct protection for people with a terminal illness. Equally, my hon. Friend the Member for Birmingham Northfield (Laurence Turner) gave a characteristically thorough analysis of the situation. He made the important point that employers want clear guidance, and mentioned a number of relevant codes that may need to be updated. The shadow Minister, the hon. Member for Mid Buckinghamshire (Greg Smith), also made the point that a number of employers do not have any policy at all; we can certainly take that away and look at it.
My hon. Friend the Member for Great Grimsby and Cleethorpes (Melanie Onn) made an important point about St Andrew’s hospice in particular: both the people who work there and those they help in their last days of life have protection, should it be needed. That is a reassurance to those in the hospice.
My hon. Friend the Member for Blyth and Ashington (Ian Lavery) spoke movingly about the awful moment when someone gets a diagnosis. He made the point, as did a number of hon. Members, that different people will react differently: some want to continue to work and carry on as best they can. He mentioned the potentially traumatic experience of having to notify one’s employer—seeing, in black and white, that there is a terminal illness. That is one of the challenges we would face if we were to legislate in this area.
The Liberal Democrat spokesperson, the hon. Member for Wokingham (Clive Jones), raised questions about statutory sick pay. He will be aware that the Employment Rights Bill will significantly increase the scope of those who are eligible for statutory sick pay by removing the lower earnings limit and the waiting days. I hope that his party will be able to support that Bill on Third Reading. He also mentioned raising benefits, and I will pass on his request to colleagues in the Department for Work and Pensions who are responsible for the matter.
The hon. Member for Strangford, as well as a number of other Members, made the point that people with a terminal illness want the choice to work if they can. For some people, work forms a big part of their social group. Work is about dignity; it is about finding something that occupies a person’s mind other than thoughts about the terrible situation they are in. People should be able to continue to work if they want to. Of course, not everyone wants to, and not everyone can—this issue is not simple to characterise. Everyone reacts differently, and everyone is a different situation: their medical conditions and prognoses will all be very different. People will therefore need very different kinds of support, depending on their situation.
We must deal with this issue with sensitivity, but also with flexibility. We must not only make sure that protections are in place, but enable employers and employees to have the space and freedom to come to the arrangements that suit them best. A number of hon. Members referred to protections under the Equality Act. I remind hon. Members that anyone with a health condition that has a substantial and long-term effect on their ability to carry out normal day-to-day activities is classified as disabled and therefore has protection under that Act, whether as an employee or a job applicant. Certain chronic illnesses, such as cancer, entitle the employee to automatic protection under the Act.
The vast majority of people with a terminal illness should be covered by the Equality Act. However, I have heard what various Members have said—indeed, my hon. Friend the Member for Corby and East Northamptonshire, who introduced the debate, mentioned people who may not fit within the protections of that Act, and I am happy to have a further conversation with him to understand where the gaps are. There are also more general protections relating to unfair dismissal under the Employment Rights Act 1996.
As we know, terminal illness is a longer journey for some than for others. Some facing it may wish to carry on working; some may not. However, we need to think about what support is available for people. The individual placement and support in primary care programme provides support to unwell people who are out of work and to those who need support with their health to stay in work. The support available includes physical and psychological treatment, in recognition that illness, including terminal illness, can take many forms. Alongside that, the Government provide Access to Work grants to help with the extra costs of working beyond standard reasonable adjustments and tailored support for individuals through work coaching, among other support.
More generally, the Government provide employers with guidance on health disclosures and having conversations about health, as well as guidance on legal obligations. However, I take the point that that guidance is not well understood out there. We think our guidance is helpful for employers, but we need to make sure that they are aware of it and that it is as up-to-date as possible.
As we have already touched on, terminally ill people who wish to remain in work may need reasonable adjustments to do so. One of the options for people is to look at flexible working. Quite often, terminal illnesses have a debilitating effect on people’s energy levels, so being able to take time off flexibly is important. All employees have a statutory entitlement at the moment to request flexible working from day one of their employment. The new Employment Rights Bill will update that entitlement to introduce, among other changes, a requirement that any rejection of a flexible working request be a reasonable one. We hope that will make it more likely that any such request made by an individual with a terminal illness will be accepted.
If terminally ill people do fall out of work, they are eligible for enhanced access to a range of benefits under the special rules for end of life. Those rules allow for faster, easier access to certain benefits without needing to attend a medical assessment, and in most cases entitle the recipient to the highest rate of benefit. It is important to note that the rules apply to those who are unable to work and to those who wish to continue working, but require support to do so. The special rules for end of life aim to positively impact the quality of life of people with limited time left by ensuring that they can receive the financial support they are entitled to quickly and easily.
However, as hon. Members have already referred to, we are determined to go further. As we have heard, many employers have signed up to the Dying to Work charter, a TUC initiative that aims to unite employers under a standardised action plan to support employees as and when they are concerned. The charter represents a commitment from employers to ensure that all employees experiencing terminal illness have
“security of work, peace of mind and the right to choose the best course of action for themselves and their families which helps them through this challenging period with dignity and without undue financial loss”.
The Government have worked with ACAS to promote the charter and the TUC encourages union negotiators to seek clear agreement that their employer will abide by the charter’s principles. I am among 130 Members in this place who have already signed the charter as a commitment to my staff, because I believe that we should be setting an example as employers.
I understand that, as has been mentioned already, we are looking closely at being to implement the charter in full across Government. The Government People Group, which is in the Cabinet Office and responsible for civil service human resources, is currently working to develop a package of measures for all Departments as employers, including this Department, to introduce the Dying to Work charter. The Government People Group is due to meet the TUC in January to discuss that and a Minister will then be appointed to lead that work across Government. Once we are in a position to say that we have adopted the charter, we can hopefully be much more forward in encouraging others to sign up.
I conclude by thanking everyone for their contributions in the debate. It has been a very thoughtful and considered debate; we understand that there are concerns about how the law currently operates, but the employer needs space with the employee to agree arrangements appropriate to their own situations. We therefore believe that our current flexible approach is probably the right one and will deliver the best practical working arrangements, hopefully giving people not only the protection they need, but the flexibility and space to deal with this awful situation in the way that best suits them.
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.