Terminal Illness (Support and Rights) Bill

Alex Cunningham Excerpts

2nd reading
Friday 18th November 2022 Commons Chamber

[Alex Cunningham (Stockton North) (Lab)]

I beg to move, That the Bill be now read a Second time.

May I be the first to congratulate the hon. Member for Harrow East (Bob Blackman) on achieving a Second Reading for his Bill? Perhaps we could persuade him to organise a masterclass on how to achieve Government support for proposed legislation.

I am grateful to the Public Bill Office and, in particular, to Anne-Marie Griffiths, for their tremendous support in preparing this Bill and to the Minister who has taken the time to talk to me about what I am proposing today.

As I begin, I wish to thank the teams at both Marie Curie and the Trades Union Congress for all the vital work that they do in supporting those living with terminal illnesses. I also pay tribute to the many inspiring campaigners who work with these organisations, particularly Jacci Woodcock MBE who founded the TUC’s Dying to Work campaign, which I will talk about when I get to clause 3. I would also like to recognise the work of Mark and Cheryl whom I had the privilege of meeting a couple of months ago when I hosted Marie Curie’s Dying in Poverty parliamentary event. These campaigners and their families have been through one of the most difficult experiences that we can imagine—a terminal diagnosis—and yet they continue to use their voices to advocate to improve support for all people with terminal illnesses. Their work should inspire and humble us all—it certainly does me.

The first time I promoted a private Member’s Bill, to ban smoking in cars with children present, I am proud to say that the Government eventually implemented the measures, albeit three and a half years later. I am hoping they will make quicker progress this time. As the cost of living crisis deepens, people living with terminal illnesses will be disproportionately impacted. Indeed, they are already facing increasing financial precariousness. Between April and September of this year, almost one in five calls to Marie Curie’s support line were from people affected by terminal illness who were concerned about their finances—an increase of 38% on the same period last year. Therefore, I hope the Government take up the measures in my Bill quickly, and provide those living with terminal illnesses with much-needed additional financial support, without costing the Exchequer a penny.

Nobody should die in poverty, but, tragically, many of our constituents who should be able to spend the last stage of their lives enjoying the company of the people they love, are instead worrying about their finances, struggling to pay bills and incurring debts that will be passed on to their loved ones when they are gone. In 2021, Marie Curie commissioned Loughborough University to examine the number of people who die in poverty in the UK each year. The findings of the research are stark and horrifying: 90,000 people die in poverty every year in the UK, one in four people who die in working age are in poverty in their last year of life, and two in three working-age parents who die experience poverty in the last five years of life.

Being diagnosed with a terminal illness can lead to a number of additional costs, including travel to appointments, medication costs and higher energy bills, which I will come on to a little later. These costs all land on the doorstep just as people’s income is reduced, as they may be forced to stop work or at least reduce their working hours. As Marie Curie noted in its briefing ahead of the autumn statement:

“For many, this ‘double squeeze’ on household finances directly leads to a fall below the poverty line. Working age people living with a terminal illness are a third more likely to be in poverty than other working age people.

For those who die in working age the risks are even higher. Without the fixed income provided by the State Pension and other lifetime savings to rely on, people who die in working age are more than twice as likely to experience poverty at the end of life as those who die in pension age.

Working age families with children are particularly vulnerable to falling into poverty when hit by terminal illness. Childcare costs cannot be avoided and the impact of one or both parents leaving the workforce means that these families are more likely than any other group to fall below the poverty line when one parent is terminally ill.”

These statistics underline the urgent need for additional financial support for those living with a terminal illness, particularly those who are of working age.

There is a range of possible practical and impactful interventions that Marie Curie has worked up, such as placing elements of the National Institute for Health and Care Excellence guideline NG6, “Excess winter deaths and illness and the health risks associated with cold homes”, on a statutory footing and including people with terminal illnesses on the priority services register. That obliges providers to prioritise vulnerable customers for additional support, such as advance notice of planned power cuts or priority support in emergencies. It has also been energetically campaigning to give all dying people access to their state pension, no matter their age; to protect dying people from soaring energy bills, including by extending eligibility for the winter fuel payment; and to support dying parents with childcare costs. I urge the Minister to consider Marie Curie’s proposals that are wider than we are discussing today, and to meet it to discuss the full range of policies it has developed. For my part, the scope of this Bill is much narrower, so I hope she will be able to commit to advancing these limited but important proposals.

If implemented, my Bill would require utility companies to provide certain financial supports to customers with a terminal illness, and it would strengthen the employment rights of people with a terminal illness. Clauses 1 and 2 will enable people who are terminally ill to access financial support from their energy provider via the warm home discount and the energy company obligation. The measures will amend the eligibility criteria for these schemes in existing legislation, to give energy providers an obligation to provide such forms of support to customers who are thought to be in their last year of life.

In a 2021 report, “No place like home?”, the all-party parliamentary group for terminal illness concluded that the added costs of heating homes could drive many terminally ill people and their families into poverty and have a negative impact on their physical and mental health and wellbeing. That finding was confirmed by Marie Curie in the 2022 report “Dying in poverty”, which said that the energy bills of terminally ill people could increase significantly after their diagnosis. For example, some terminally ill people may need to heat their homes for longer than before, or to a higher temperature, as a result of their condition, while others will need to power medical equipment in the home, such as ventilators, respirators or monitors. Those higher energy needs can push households affected by terminal illness into fuel poverty.

The UK’s energy providers are required to make certain forms of support available to customers who may struggle to afford the cost of their bills, or who may be vulnerable and need support. They include the warm home discount—a £140 discount on electricity and gas bills over the winter period—and the energy company obligation, which obliges providers to deliver energy efficiency measures to homes in order to help households cut their heating bills. In some cases, eligibility for these schemes is set nationally: for example, low-income pensioners are automatically eligible for the warm home discount under the “core group” system, while customers in receipt of certain benefits are automatically eligible for support under the energy company obligation’s help to heat group. In other cases, energy providers set their own eligibility criteria—such as those for the warm home discount wider group—which are often based on receipt of certain means-tested benefits or other criteria.

Terminally ill people, especially those of working age, are not automatically eligible for support via these schemes despite their vulnerability to fuel poverty. They may be eligible to apply for support based on other criteria—for example, disability or receipt of means-tested benefits—but they will not necessarily be successful. Both the warm home discount and the energy company obligation require energy companies to make a limited pot of money available to support customers, and a provider’s criteria do not necessarily prioritise those who are terminally ill for support.

Legislation places obligations on UK energy providers to make support available to customers via the warm home discount and energy company obligation on the basis of eligibility criteria set out in legislation. Regulation 8(5)(c) of the Warm Home Discount (England and Wales) Regulations 2022 sets out the eligibility criteria for the core group, who are automatically eligible for the payment. At present, people are considered eligible for support under the core group system if they are in receipt of the “guarantee credit” element of pension credit. Article 2 of the Electricity and Gas (Energy Company Obligation) Order 2022 sets out the eligibility criteria under the energy company obligation for the help to heat group, who are eligible for interventions to improve the energy efficiency of their homes to help reduce their bills. At present, people are considered eligible for support under the help to heat group if they are in receipt of certain benefits outlined in schedule 1 to the order.

My Bill amends each of those items of legislation to introduce a new eligibility criterion based on the Social Security (Special Rules for End of Life) Act 2022, extending automatic eligibility for the warm home discount and energy company obligation to people who are thought to be in the last year of their lives. The Government have already demonstrated some commitment to improving financial support for those with terminal illnesses by amending the legal definition of terminal illness in benefits law to enable anyone who is thought to be in the last year of life to claim certain benefits on a fast-track basis. I welcome that, but I also hope that the Government can take this further step and provide necessary additional support for some of those who will need heating the most this winter as their energy bills climb.

The third and final clause of my Bill aims to put the demands of the TUC’s Dying to Work campaign on a statutory footing, ensuring that terminal illness is recognised as a protected characteristic, so that an employee with a terminal illness would enjoy a protected period during which they could not be dismissed as a result of their condition. This protection will provide those who have received a terminal diagnosis and are still of working age with the choice of how to spend their final months, and the peace of mind of knowing their job is protected and the future financial security of their family is supported. Losing one’s job following a terminal diagnosis can lead to reduced income, further exacerbating the issues with financial security that I have discussed. Sometimes, it leads to a deeply stressful and upsetting HR procedure, which should not have to be a concern for those in the final stages of their life. If a worker with a terminal illness loses their job, they may also lose any death-in-service payments that they have earned through a lifetime of work but which are payable only to those who die while still in employment.

Clause 3 provides that employers must take into account an employee’s terminal illness when deciding whether it is a reasonable adjustment to retain in employment those who have terminal illnesses, rather than dismiss them in accordance with a sickness absence policy. This will provide people with a terminal illness who are still of working age and who wish to continue working with additional security at the end of their life, and remove some of the stress and fear that they face. Although in some cases the individual may wish to stop working and spend their remaining time outside of work, some workers decide to continue working as long as they can, either because they need the financial security or because they find that their work can be a helpful distraction from their illness. Those who decide to stay in work should not be having to stress about dismissal or salary reductions after any periods of sickness associated with their illness. The clause ensures that whatever choice a person makes, they can expect the appropriate help and support from their employer, because when a person receives a terminal diagnosis, their job should not be on their list of worries.

Thanks to the efforts of the TUC, over half a million workers in the UK are already covered by the Dying to Work charter. I hope that today the Government can commit to extending that to all workers. I desperately want these proposals to succeed, and would be more than happy to work with the Minister to amend the Bill if necessary ahead of implementation; I know that Marie Curie and the TUC would be pleased to meet officials in order to help in any way they can, too. I reiterate that these changes will not cost the Exchequer a penny, and the cost to energy companies is also very limited, especially when compared with their huge profits. The change to the warm home discount in clause 1 will not necessarily require additional funds, as all it does is widen the criteria of the core group who automatically receive it to include terminally ill people.

The cost per person of the energy company obligation will depend heavily on what steps are needed to make that person’s home more energy efficient: for example, they may need a new boiler, insulation or a smart meter, among other things. However, again, I am sure the Minister can recognise that those costs would be extremely modest. While these clauses will not be able to ensure that no one dies in poverty—which is what this House should be striving for—I believe they could have a significant impact on the lives of terminally ill people, particularly those of working age, when they are at their most vulnerable. I hope the Minister will support the Bill’s Second Reading today, and work with me in Committee to make it law.

--- Later in debate ---

[George Freeman]

My hon. Friend makes an excellent point on behalf of the hospice sector, and Mountbatten hospice in particular. The hospice sector is key through its provision of not only care, but support to citizens at the most vulnerable time in their life. I join him in paying tribute to hospices, and I will come on to talk about some of the ways they contribute. Macmillan Cancer Care has done some interesting work on energy in particular.

Customers on prepayment meters may receive a top-up voucher, and all payment types benefit as long as they have an account with a participating energy supplier. For eligible households where there is no data or we are unable to match, they receive a Government letter by mid-January, asking them to call a helpline and verify their eligibility. We are doing everything we can to try to reach out. That helpline opened on 14 November and has already started processing customers.

The warm home discount provides further help beyond that £150 rebate. Under the industry initiatives element of the scheme, worth more than £40 million this year, several hundred thousand households receive help such as debt write-off, energy efficiency measures, financial assistance and benefit entitlement checks. All households helped under that element of the warm home discount also receive energy saving advice. Charities and businesses offering those services can provide genuinely life-changing packages, and we encourage everyone to pursue them.

Low-income and vulnerable households, including those with a terminal illness, may be able to benefit under industry initiatives even if they are not eligible for the £150 rebate. Indeed, under those industry initiatives energy suppliers have worked with charities, including Macmillan Cancer Support, to provide particular help to people diagnosed with cancer.

On energy efficiency, which was the second point raised by the hon. Member for Stockton North, while the Government, Ofgem and energy suppliers offer direct help with energy bills, we know that the best long-term solution is to improve the efficiency of people’s homes. That is why yesterday the Government announced a major new commitment to drive improvements in energy efficiency to bring down bills for households, businesses and the public sector with a clear ambition to reduce the UK’s total energy consumption from buildings and industry by at least 15% by 2030 against 2021 levels.

To achieve that, a new energy efficiency taskforce will be charged with accelerating the delivery of energy efficiency across the economy, and new Government funding worth £6 billion will be made available from 2025 to 2028. That is in addition to the £6.6 billion committed to over this Parliament, of which just over half has already been allocated to significantly improve the least energy-efficient homes through our social housing decarbonation fund, the home upgrade grant and the local authority delivery scheme. I hope that he can see that we are trying again to focus that money on that most vulnerable cohort whom he has spoken for. Homes receiving energy efficiency measures under those schemes will benefit from average bill savings of between £300 and £700 a year based on an average energy bill of £2,500.

I turn to the energy company obligation, which is a specific part of the hon. Member’s Bill. ECO, as it is known, is a regulation on larger energy suppliers to deliver energy bill savings through the installation of energy efficiency measures. Since the scheme started in 2013, about 3.5 million energy efficiency measures have been installed in about 2.4 million homes across Great Britain. Therefore, just under 10% of British households have lower energy bills as a direct result of ECO. This year, the Government extended the scheme until March 2026 and increased the spending envelope from about £640 million to £1 billion a year. That is focused on low-income and vulnerable households living in the least energy-efficient homes.

Households can benefit either through means-tested benefits or if they are social housing tenants or identified as low-income and vulnerable by the local authority or energy supplier. That last element is known as ECO Flex. Energy suppliers can meet up to half their overall obligation through ECO Flex, which is focused on private tenure housing. Under the current iteration, we have introduced a route intended specifically to help households experiencing severe health issues—both mental health and physical disability—including terminal illness-related disabilities. Households who receive energy-efficiency measures under ECO will typically save about £600 a year. There are organisations helping low-income households who offer help under ECO Flex and warm home discount, and the Government recently announced a further expansion of that support with a supplementary ECO Plus scheme, which is worth a total of £1 billion from 2023 to March 2026 and will allow a broader set of households to benefit. We plan to publish a consultation on the detailed proposals later this month.

I turn finally to employment rights, which is the final substantive clause of the Bill. Let me take the opportunity at the Dispatch Box, as a Minister in the Department for Business, Energy and Industrial Strategy, to make it clear that the Government strongly expect and encourage all employers to treat people in such a situation with the care, sensitivity and compassion that we would all expect people we know to be treated with. Being a good employer and a good business means exactly that. People suffering from a terminal illness should not have to face any additional burdens as a result of their employment—not least fearing for their job—at a time when they are dealing with the very hardest illnesses and having to make plans for the end of their life.

The Government fully support the objective of enabling employees with life-threatening conditions to continue working for as long as possible. One of the things that many people feel most strongly about on diagnosis is wanting to be able to carry on living their life for as long as they possibly can, and we owe it to them to make that possible. The hon. Member has been a great champion of that. The Equality Act 2010 provides that workers who are disabled due to chronic diseases or conditions are fully protected from any discriminatory treatment by their employers. In the overwhelming majority of cases, someone with a terminal illness will meet the definition for being disabled under the Act. 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. Any kind of cancer, for example, is automatically regarded as a disability.

Under employment law, a qualifying employee who is unfairly dismissed or forced to resign from a job because of a terminal illness may bring a claim of unfair dismissal against their employer. However—before the hon. Member for Stockton North asks me, as I suspect he will—I would be the first to accept that if one is in the late stages of a terminal disease, bringing a case to the employment tribunal is not for the faint-hearted. It is not, in many cases, a reasonable remedy, and given that, we need to think about how we can ensure that people are not being asked to rely on a remedy that, in practice, they will struggle to call on. Depending on the nature of the illness and its impact on them, they may also be able to bring a claim of disability discrimination under the Equality Act, but again, the same condition applies.

The Equality Act goes further in relation to those whose illness renders them disabled: it places a clear statutory duty on employers to make reasonable adjustments for those with disabilities, quite rightly, so that they can access or remain in work. Reasonable adjustments can include making changes to the workplace, changing someone’s working arrangements, finding a different way to do something or providing reasonable equipment, services or support. Crucially, reasonable adjustments are specific to an individual employee, and making a reasonable adjustment is not a one-off requirement; it requires review, adaptation and ongoing support as people’s needs change and develop. Equally, it is not a limitless requirement; it has to be reasonable in all circumstances, taking a variety of factors into consideration.

More generally, where an adjustment is not directly required because of a disability, for many people an additional bit of flexibility in the workplace is crucial to allowing them to deliver their job. Employees with 26 weeks’ service already benefit from the right to request flexible working, which allows them to ask for a change in their hours or location of work. Most employers rightly and honourably go further than their minimum statutory duties. It is the bad employers that we need to get on top of. I was pleased that the Government were able to support the Employment Relations (Flexible Working) Bill, which deals with that issue, on Second Reading on 28 October. If that Bill successfully gets through Parliament, it will update the existing right to request flexible working to encourage more effective dialogue between employers and employees, allow more statutory requests in a year and require that they are administered more speedily. The Government believe that that will benefit employees generally but also those who are working with a life-threatening condition. We look forward to working with the hon. Member for Bolton South East (Yasmin Qureshi) to take that Bill forward.

The Government are absolutely committed to improving the lives of people with disabilities, terminal illnesses and related conditions. We believe it is imperative that all employers fulfil their obligations to their employees. There is a lot of guidance and support available to them, and the House has heard the considerable package of support the Government have put in place, including through the ACAS website, which I encourage anyone listening to or watching the debate to look at. We encourage all employers to make use of those resources and ensure that employees with terminal illnesses are given the help and support they need to stay in work if that is what they wish to do, which many do.

Having gone through the Bill carefully with officials in the Department, we now need to go through it with officials in the Department for Work and Pensions and the Department of Health and Social Care. While I am aware that the lead on this is the Small Business Minister, in my Department, I suggest to the hon. Member for Stockton North that we convene a group of key Ministers in the Department for Business, Energy and Industrial Strategy, the DWP and the DHSC, to look at the specific groups who are not able to receive their entitlements—that is the hon. Gentleman’s point: many people have entitlements but are not getting them—and to ensure that good employers who are trying to do the right thing can provide a mixture of private employer support and universal credit support.

Everyone here today has heard the extensive support the Government are providing, but it is not just a question of announcing lots of pots of money. For the people who are living in this very difficult situation, we must ensure that we make it easy for them to apply for and secure that help. I would happily undertake to request that Ministers in those two Departments and the Small Business Minister, my hon. Friend the Member for Thirsk and Malton (Kevin Hollinrake) sit down to look in particular at how we can ensure that eligible people get what they are eligible for and how we can promote best practice and make sure that these people who have the tragedy of a terminal illness are able to fulfil their lives properly in the workplace.

[Alex Cunningham]

I just place on record my thanks to the Minister for the constructive way in which he is responding to my speech and my Bill. I hope we will be able to work on it sometime in the future.

[George Freeman]

I am grateful, and in return I thank the hon. Gentleman for raising this matter. I look forward to our being able to make some progress, whether or not in the form of this Bill. I think he understands that we need to try to focus on solving the problem, and he probably does not want to wait three years to get his Bill on to the statute book—he would rather get something done more quickly.

In conclusion, I will sign off where I started, and pay tribute to the work of the Marie Curie team and all the hospices that Members have mentioned around the country, which do so much for this most vulnerable group. I hope that Members across the House can hear how seriously the Government take this matter. We are putting significant funding out there. The real challenge is to make sure that the people on the frontline who are eligible and dealing with the very hardest situation in life can get the help they need.

On the employment side of the hon. Gentleman’s Bill in particular, everyone can see that there is a problem when people do not have the most enlightened employers. Asking those people to take recourse through the courts when they are in the situation they are in is hard, and we need to sit down and see whether there is something we can do to ensure that happens less and less, and that people suffering from disabilities and terminal illnesses can live and work as they want, with dignity right through to the end of their working lives. I think all of us in the House would support that.