Employment Rights: Terminal Illness

Justin Madders Excerpts

Wednesday 18th December 2024 Westminster Hall

[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.