Written evidence submitted by Marie Curie (WIN0039)


Introduction

 

  1. Marie Curie is the leader in end of life experience in the UK. We work hard to provide a better life for people living with a terminal illness and their families. We offer expert care across the UK in people’s own homes and in our nine hospices. Last year, we supported more than 50,000 people across the UK at the end of their lives. Our free information and support services give expert care, guidance and support to families so they can have something that really matters to them – time to create special moments together. We are the largest charitable funder of palliative and end of life care research in the UK and campaign inside and outside Parliament for the policy changes needed to deliver the best possible end of life experience for all.
     
  2. Not all of the questions asked in the Committee’s call for evidence for this inquiry are relevant to Marie Curie’s work on behalf of terminally ill people, or terminally ill people’s experience of high energy prices. Our answers relate only to those areas of the call for evidence which are of relevance to our work.

 

Terminal illness and fuel poverty
 

  1. Even before the cost of living crisis and the historically high energy prices which the UK has experienced in recent years, many families affected by terminal illness were struggling to afford the cost of energy. People with a terminal illness are particularly vulnerable to fuel poverty – their higher energy needs, such as the need to keep the home warmer or cooler for longer to stay comfortable and healthy, using mobility aids and assistive technology, or storing medications at the right temperature can lead to a dramatic increase in the energy bills of people living with a terminal illness and their households.
     
  2. A person’s energy bill can increase as much as 75% after a terminal diagnosis, compared to before they were diagnosed[1]. These increased costs often come just as their income is reduced; four in five people living with some terminal illnesses suffer income loss as a result and two in three rely on benefits as their main or sole form of income[2]. This combined impact can lead to terminally ill people and their families facing significant financial strain as a result of the high energy costs they face.
     
  3. In addition to the financial impact on people affected by terminal illness, high energy costs can have an indirect impact on a terminally ill person’s health and wellbeing. Being unable to keep the home environment at the right temperature due to the cost of energy, struggling to afford the cost of running specialist at-home medical devices, or having to choose heating over eating and not having sufficient nutrition, risks making terminally ill people’s conditions worse and reducing their quality of life – increasing the risk that they will be unable to be cared for at home and have to be admitted to hospital.
     
  4. The ongoing cost of living crisis and the high cost of energy experienced by UK consumers is only making these challenges more difficult for people affected by terminal illness. A recent survey of Marie Curie’s Caring Services staff found that 84% have cared for patients who were struggling with the cost of energy – with 28% observing patients having difficulty affording to run vital at-home medical devices and 37% having witnessed impacts on their patients’ health as a result. Nearly one in four (23%) Marie Curie staff reported that these impacts had hastened the deterioration of some of their patients’ conditions[3].
     

Support from the UK Government
 

  1. Despite their high energy needs and vulnerability to fuel poverty, many people with a terminal illness and their families find that they receive inadequate Government support with their energy costs. Marie Curie’s recent Caring Services staff survey found that six in 10 (60%) of our frontline staff found government assistance with the rising cost of living had been ‘somewhat supportive’ for their patients, but just 15% felt it had been ‘supportive’ and only 6% felt it had been ‘very supportive’ – and, concerningly, nearly one in five (19%) thought the support had not been helpful for their patients[4].
     
  2. Much of the support made available by the UK Government in 2022-23 was based upon the requirements of a household with average energy needs and was insufficient to meet the added costs a household affected by terminal illness will experience. As outlined above, terminally ill people and their families often have substantially higher energy needs than the average household and we believe that additional, targeted support should be made available to support these households with the particular challenges they face.
     
  3. For example, while the Energy Bill Support Scheme (EBSS) was a welcome measure to support households with historically high energy bills due to the cost of living crisis, the level of support provided by the scheme – (£400, or approximately £66 per month over six months) – was designed to support households paying an average UK energy bill. For those living with a terminal illness, who may have had vital at-home medical equipment to power and substantial additional heating and other energy needs over the winter, the scheme is unlikely to have covered all the additional costs they experienced due to rising energy bills over that winter.
     
  4. Similarly, while the Energy Price Guarantee (EPG) provided a ‘support rate discount’ on energy bills after the Ofgem price cap rose in autumn 2022, the high energy needs of many households affected by terminal illness will have seen many still paying bills above the £2,500 to which the average bill was capped. With both the EBSS and EPG having fallen away and UK energy prices remaining high in historic terms, people with a terminal illness and their families will continue to experience high energy bills this winter – based upon an estimate that their bills can be as much as 75% higher than the average household’s, many may still be paying more than £3,500 a year for energy – and need ongoing, targeted support with these costs.
     
  5. As highlighted in Marie Curie’s recent report One charge too many, the cost of powering at-home medical devices can be significant for people living with terminal illness. The cost of running an oxygen concentrator can be £65 per month, a dialysis machine £27 per month, a ventilator £35 per month and a body drier £32 a month at July 2023 energy prices[5]. While it is difficult to estimate how many people in the UK are using such devices at home, in England & Wales alone around 150,000 people die at home each year from conditions that are commonly treated with common medical devices[6].
     
  6. Despite many terminally ill people needing to use such devices as part of their care and treatment, often they end up paying out of pocket for the energy they use to power them. In England, rebate schemes for the cost of powering medical devices only exist for oxygen concentrators and dialysis machines – and in practice, these schemes either refund patients three months in arrears (oxygen concentration) or are inconsistently administered across the country, with some NHS Trusts not refunding the full amount patients pay (dialysis).
     
  7. Marie Curie believes that the Department of Health and Social Care (DHSC) should improve how the cost of running medical devices is refunded to terminally ill patients in England, so that rebate schemes are extended to all devices, and explore how patients could be credited upfront for the energy their devices will use, rather than being paid in arrears. This would provide vital, targeted support for terminally ill people and their families this winter with a key driver of the higher energy costs they face. It should be acknowledged that any additional funding required to deliver this approach would have Barnett consequentials for the rest of the UK that should be protected to support the NHS in each nation to consider similar approaches.
     
  8. Many terminally ill people also find that they are ineligible for existing Government support with their high energy costs. The Warm Home Discount (WHD) is only automatically available to older people who are receiving the Guarantee Element of Pension Credit or, as of 2022, people on low incomes (receiving certain benefits or tax credits) and whose homes are likely to be hard to heat[7]. Many terminally ill people, such as older people who do not receive Pension Credit or working age people who are not receiving Universal Credit, will not automatically qualify. Other people may qualify for the WHD but must apply to their energy provider for the scheme – eligibility criteria vary between providers, and a provider’s WHD allocation is often paid on a first-come, first-served basis to eligible consumers who apply, meaning many terminally ill people lose out.
     
  9. Marie Curie believes that the Department for Energy Security & Net Zero should ensure that all households including a terminally ill person and on a low income are automatically eligible for a Warm Home Discount under core group 2. Core group 2 was implemented for low-income consumers with high energy costs; ensuring that all low-income households including a terminally ill person would reflect that people with a terminal illness are likely to have substantially higher energy costs than the average household, even if they are not living in a ‘hard to heat’ home. This measure would go some way to providing targeted support with energy costs for a particularly vulnerable group of consumers this winter.
     
  10. Finally, it should be recognised that the additional energy needs people affected by terminal illness have, and the higher costs they face, impact households all year round and not just over the winter months. Going forwards, Marie Curie believes that the Department for Energy Security and Net Zero and Ofgem should consider the introduction of a Social Tariff on energy prices for those most in need, to ensure that energy remains affordable for people with a terminal illness and others who are the most exposed to high prices and most vulnerable to fuel poverty all year round.
     
  11. These measures would not only support people with a terminal illness financially with the high energy costs they face, but by supporting people to stay at home to be cared for at the end of their lives, could reduce the risk of terminally ill people choosing to receive their care in hospital due to the high cost of energy. Furthermore, they could reduce the risk of terminally ill people experiencing unplanned hospital admissions as a result of the health and wellbeing impacts of living in a cold home. These pressures are significant – the average cost of an NHS inpatient palliative care bed is £349 per day[8] and currently around 5.5 million bed days are required by people at the end of life in England alone[9].
     

Support from Ofgem and energy providers
 

  1. As work from the All-Party Parliamentary Group for Terminal Illness found in 2021, many terminally ill people from low-income families pay for their energy via prepayment meters[10]. With two-thirds of terminally ill people reliant on benefits as their main form of income, households affected by terminal illness are less likely to be able to absorb additional costs associated with prepayment meters than average households.
     
  2. Recent changes to the rules around prepayment meters are likely to substantially improve the experience of people with a terminal illness who pay for their energy via these meters. Marie Curie welcomes the recent Ofgem Supplier Code of Practice on involuntary prepayment meters, which includes households including a person with a terminal illness as part of the ‘high risk’ group for whom suppliers should not involuntarily install prepayment meters[11]. This will help ensure that people with a terminal illness are not placed on prepayment meters without their consent by their energy provider. At present, the Code of Practice remains voluntary for energy suppliers, meaning that depending upon their supplier some terminally ill customers may still find themselves placed onto a prepayment meter without their consent. Marie Curie believes that Ofgem should translate the Involuntary PPM Supplier Code of Practice into license rules for energy suppliers, to ensure that all terminally ill people have this level of protection from an involuntary installation of a prepayment meter regardless of their energy supplier.
     
  3. Similarly, changes announced in the Spring Budget and implemented from July 2023 should ensure that customers on prepayment meters do not pay more for their energy than those on smart or credit meters. The additional cost of paying for energy via prepayment meter was identified by the APPG for Terminal Illness as a particular challenge for many people with a terminal illness given their high energy needs and reliance on benefits for income; ensuring they do not pay a higher tariff for their energy simply by being on a prepayment meter will help ensure that their energy is more affordable.
     
  4. There are, however, some residual challenges that households affected by terminal illness experience with prepayment meters. The daily standing charge on prepayment meters – a daily fee for being connected whether any energy is being used or not – can cause a particular challenge for terminally ill people, with patients often returning home from a period in hospital or a hospice to find a debt on their meter, causing further financial strain as they must pay this off before adding further credit. Even adding credit to a prepayment meter can be a challenge for many people with a terminal illness, with many too unwell or lacking the mobility to go to a shop.
     
  5. Marie Curie believes that Ofgem and energy providers should prioritise people with a terminal illness for switching from prepayment meters to a credit meter. In view of the financial circumstances of many households affected by terminal illness, with most reliant on benefits as their main form of income, we believe providers should allow households including a terminally ill person to switch away from a prepayment meter without being required to pay a deposit.

 

August 2023


[1] Marie Curie. One charge too many: The impact of rising energy costs on people at the end of life. July 2023.

[2] Marie Curie. The cost of dying. December 2019.

[3] Marie Curie. The Cost of Living: A survey of Marie Curie Caring Services Staff. March 2023.

[4] Ibid.

[5] Marie Curie. One charge too many: The impact of rising energy costs on people at the end of life. July 2023.

[6] Ibid.

[7] Gov.uk. Warm Home Discount Scheme.

[8] Personal Social Services Research Unit, Centre for Health Economics. Unit Costs of Health and Social Care 2022 Manual. 2023.

[9] Marie Curie. In and out of hospital: Emergency hospital admissions and A&E attendances in the last year of life in England. July 2021.

[10] All-Party Parliamentary Group for Terminal Illness. No place like home? Report of the APPG for Terminal Illness inquiry into housing and fuel poverty at the end of life. June 2021.

[11] Ofgem. Involuntary PPM – Supplier Code of Practice. April 2023.