Employment Rights: Terminal Illness

Greg Smith Excerpts

Wednesday 18th December 2024 Westminster Hall

[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.