Terminal Illness Energy Support Options Paper

How it Supports the Scottish Government’s Fuel Poverty Strategy

This proposal aligns with the Scottish Government’s statutory duties under the Fuel Poverty (Targets, Definition and Strategy) (Scotland) Act 2019, and directly supports the delivery of the current Fuel Poverty Strategy. 

Terminally ill individuals typically require an enhanced heating regime as recognised in the existing regulations[vi]. The Scottish Government’s 2021 Fuel Poverty Strategy highlights that fuel poor households are more likely to include someone with a long-term illness or disability, recognising that cold homes exacerbate ill-health and increase health risks. Committing to a person-centred approach, the Scottish Government’s analysis and research recognised that fuel poverty was a threat to health and wellbeing, which if left unaddressed leads to self-rationing and an increased risk of self-disconnection[vii]. 

Evidence submitted in advance of the publication of the 2021-2024 Periodic Report from third sector organisations further highlights that disabled people with serious long-term conditions face high essential energy expenditure, while current cost-of-living measures were not sufficiently targeted at those with the highest energy needs[viii].

The Scottish Fuel Poverty Advisory Panel (SFPAP), in its scrutiny of the 2021 Fuel Poverty Strategy, has recommended that the Scottish Government develop a stronger focus on improving health outcomes for those suffering fuel poverty[ix]. In response to the 2021-2024 Periodic Report, SFPAP also highlights gaps in current schemes’ recognition of additional energy needs for all critical medical equipment[x].

This proposal directly addresses these gaps by providing targeted affordability support to terminally ill consumers, consistent with the Scottish Government’s person-centred, health-focused approach to tackling fuel poverty.

Implementation and Administrative Considerations

Identifying and Verifying a Terminal Illness Prognosis

Verification of a terminally ill prognosis is essential to effectively target terminally ill consumers with energy support. 

Social Security Scotland (‘SSS’) have an established Special Rules for Terminal Illness (‘SRTI’) process, facilitated by the “Benefits Assessment Under Special Rules in Scotland” (BASRiS) medical evidence form. A BASRiS form is a form that terminally ill patients in Scotland can use when applying for specific benefits, like disability benefits, under special rules that provide the claimant with an up-rated, expediated benefit claim. A patient’s healthcare professional will complete the BASRiS form, providing clinical confirmation that the named patient meets the definition of terminal illness under Scotland’s social security system[xi]. 

Additionally, the BASRiS system provides an established and accurate route to identification and verification as disability benefits are not subject to income or capital thresholds like means-tested benefits are, which may otherwise exclude terminally ill consumers.

Terminally ill consumers would not need to apply separately for our proposed energy support as SSS already holds the information required to automatically data match and transfer them onto the additional energy support. Following verification, they would automatically receive the relevant energy affordability support in addition to their disability benefit. Using data‑matching to identify SRTI‑eligible individuals removes the need for a separate applications and reduces the administrative burden on consumers at a time of significant vulnerability.

Payment Infrastructure

SSS already facilitate devolved social security payments, including devolved energy support. Therefore, existing payment infrastructure will be in place to facilitate payments to identified terminally ill patients in a manner similar to that is already done with disability benefits.

Devolution of Disability Benefits

The process for devolving disability benefits in Scotland meant that until recently there were terminally ill benefit claimants in Scotland who continued to receive disability benefits administered by the Department for Work and Pensions (‘DWP’). 

SSS completed the case transfer process for claimants in receipt of Personal Independence Payment (PIP) in Scotland by the end of June 2025, and aimed to complete the transfer of Attendance Allowance (AA) clients in Scotland by the end of 2025[xii].

Therefore, it is expected that any cross-border deliverability challenges should be mitigated. 

Current numbers of SRTI Eligible Individuals in Scotland

Using the latest published statistics from SSS, we have estimated there are 230 child-age SRTI eligible benefit claimants[xiii], 7,730 working-age SRTI eligible benefit claimants[xiv], and 5,390 pension-age SRTI eligible benefit claimants[xv], for a total of 13,350 SRTI eligible benefit claimants across Scotland. 

Consumers Already in Receipt of Enhanced Rate Disability Benefits before a Terminal Illness Diagnosis  

Individuals already in receipt of the enhanced rate of disability benefits prior to a terminal illness diagnosis may not engage with the SRTI process for the purpose of future energy support. Although SRTI provides an expedited route to enhanced-rate awards, those already receiving enhanced payments may not recognise the need to reapply. This creates a risk that eligible individuals may inadvertently miss out on terminal illness-related energy support linked to SRTI-verified status.

To ensure effective delivery, consideration should be given to how terminally ill consumers already receiving the highest-rate disability benefits are identified. Targeted engagement and communications, with clear guidance to healthcare professionals, welfare advisers and other frontline staff would help mitigate this risk and ensure that eligible individuals access support in a timely manner.

Stakeholder Considerations

Ofgem’s Consumer Vulnerability Strategy recognises the greater impact a health condition can have on what disabled consumers pay for energy[xvi]. This strategy was refreshed in spring 2025. Additionally, Ofgem already has a statutory duty to consider the needs of disabled people, those who are chronically sick, of pensionable age, living in rural areas and on a low income[xvii]. Ofgem’s rules for the companies it regulates reflect the need for those companies to give due attention to the special needs for vulnerable consumers, for example in their customer service arrangements. Financial redistributive measures however, such as the one proposed in this paper, are a matter for government rather than Ofgem. 

Marie Curie has called for improved energy financial support for terminally ill consumers. Research about fuel poverty at the end of life from Marie Curie and Loughborough University in Dying in Poverty in Scotland 2024[xviii] found

One in five terminally ill people in Scotland will die in fuel poverty at the end of life;

Minority ethnic groups are more likely to die in fuel poverty at the end of life (26.54%) compared to white people (19.5%);

Over 45% of terminally ill people living in social housing will die in fuel poverty, compared to 30% of terminally ill people living in private rented accommodation; and

Terminally ill people using oil heating experience almost a 30% change in household heating bill in their last year of life.

Analysis of Delivery Options

In this paper we have considered two main options for delivering enhanced energy bill support to terminally ill people: 

creating a bespoke support payment, that provides a minimum guaranteed offset of additional essential energy expenditure, for individuals that meet the SRTI criteria (explored in section 5)

expanding eligibility of existing social security support to individuals that meet the SRTI criteria (explored in section 6)

Considerations for a Minimum Offset of Energy Bills

Costing a Minimum Offset of Additional Essential Energy Expenditure

Evidence from terminal illness charities shows that energy bills for people with a terminal illness can dramatically rise after diagnosis. CHAS estimated the running costs of vital medical equipment for a terminally ill patient in NHS Grampian in 2023 to amount to an additional £274.57 per month before heating costs are taken into account[xix] and Marie Curie estimating energy bill increases of as much as 75%.

While not every household may experience this maximum impact, an SRTI-linked terminal illness energy support payment set at 25% of a typical dual-fuel energy bill offers a “Guaranteed Minimum Offset” of these essential additional energy costs.

The current levelised, ex VAT rates for direct debit consumers on typical dual fuel bills (e.g. not accounting for essential energy expenditure from terminal illness) in the North and South Scotland DNO regions for the current Ofgem price cap period (1 January to 31 March 2026) are listed below in Table 2:

Ofgem Price Cap Statistics, 2026

Using a 25% figure of the higher of the two Scottish regions, Northern Scotland, including VAT, provides a support figure of £450 (rounded to the nearest £). While a more sophisticated figure could be produced based on specific DNO regions, or eventually individual consumption data, a simple, single figure would ensure the additional support for SRTI-eligible consumers in Scotland is meaningful while being easy to deliver in practice. 

The process for terminally ill people to follow would be not dissimilar to the current process for claiming disability benefits. A terminally ill person would make a claim for a disability benefit under the current SRTI rules, with the use of a BASRiS form as described above. Valid claims would then provide claimants with both a disability payment under the SRTI, and access to the Minimum Guaranteed Offset payment of £450. The value of the benefit could be amended annually in line with changes to the energy price cap to ensure it continues to reflect actual energy costs and provides adequate support[xx]

Considerations on Expanding Eligibility of Pre-existing Scottish Social Security Benefits

An alternative to creating a new payment could be to provide support to terminally ill people directly through existing Scottish social security benefits. 

Current Winter Heating Benefits

SSS, and DWP (through energy suppliers in the case of the Warm Home Discount (WHD)) currently deliver a number of energy support payments, such as the Scottish Winter Fuel Payment, Scottish Winter Heating Payment, and the Scottish Child Winter Heating Payment. To acknowledge the additional heating costs of terminally ill individuals, eligibility criteria for one or more of these benefits could be extended to also include SRTI eligible claimants.

The receipt of the payment would straightforwardly follow the current benefit procedures set up by SSS. For example, a terminally ill person would need to make a claim for a disability benefit under the current SRTI rules, with the use of a BASRiS form as described above. Valid claims would then provide claimants with both a disability payment under the SRTI, and passport them on to one or more of the winter heating payments, with payment being made when the relevant triggers of the passported benefit are made.

In the case of WHD, this would require SSS to also notify DWP of the SRTI eligibility to ensure relevant energy suppliers were in turn notified to deliver automated data-matched support through the Scottish WHD Core Group.

Meeting Energy Needs through Combined Support

A range of winter heating benefits have been considered, however none of them amount to the £450 figure that would be appropriate for the energy needs of terminally ill individuals. It may be possible to provide a similar level of support by broadening eligibility of two or more benefits to SRTI eligible consumers. In practice this means an SRTI eligible consumer would receive a figure that would eventually amount to around the £450 amount through receipt of multiple winter heating benefits at different times.

Interaction with Existing Benefit Entitlement

For options delivered through existing social security benefits, we assume SRTI‑eligible claimants would receive an additional entitlement equivalent to the standard payment, irrespective of any award they already receive through other routes. This approach does risk greater administrative challenges with overlapping payments complicating delivery. 

Analysis of Proposed Options for Terminal Illness Energy Support

The table in Annex 1 sets out the costings for the proposed policy options for delivering energy support to terminally ill people. The options can be broken down into broadly two categories:

• The creation of a new benefit in the form of the proposed Minimum Guaranteed Offset (policy option 1)
• Broadening the eligibility criteria of 4 existing benefits to include SRTI-eligible people (policy options 2-5)

The creation of a new benefit, proposed in policy option 1, would allow Scottish Government to design a benefit that more directly meets the additional energy needs of terminally ill people. Also, being a standalone benefit designed specifically for terminally ill recipients, it can be amended and tailored to take account for future data sets that relate to energy need and fuel poverty should they become available (e.g. more support could be provided to households with poorer energy efficiency). Finally, it can also be delivered upon receipt of the SRTI notification, recognising that additional energy costs are often a year round issue for terminally ill people and not simply a matter of providing winter heating support. However, the creation of a new benefit would come with additional administrative hurdles to set up and operationalise.

Broadening the eligibility of existing Scottish devolved benefits (policy options 2 – 5) is anticipated to have fewer administrative hurdles (e.g. existing benefit infrastructure and payment systems can be reused) and potentially therefore be quicker to deliver in the short-term. However, the value and delivery of support to terminally ill people will be necessarily constrained by the existing benefit system (e.g. under what conditions the payment is triggered, and the monetary value of the preexisting benefit, rather than linking it to the needs of terminally ill people). Not delivering support through a bespoke payment also limits opportunities for Government to tweak support specifically for SRTI-eligible people as the amended benefits are not solely designed for this group. 

Considering the available data around the estimated additional cost of energy for terminally ill people, option 1 is closest to bridging that gap for their energy need. Also, attempting to deliver support to all SRTI groups through existing benefits may produce other administrative issues (e.g. as discussed above, should an SRTI-eligible claimant receive a “repeat” payment if they already receive an existing benefit for another reason?). 

Ultimately, while there may be short-term advantages in amending existing benefits, it risks not providing sufficient support. This can only be achieved by amending multiple benefits, which in turn creates additional complications in the delivery of support, and limits the ability to straightforwardly target support that delivers for needs of terminal illness.

The option to create a new benefit of this type is within the Scottish Government’s competency, and while it requires additional consultation that amending existing benefits may not, lessons can be taken from existing benefits to aid in this process. The Scotland Act 2016 (as it amends the Scotland Act 1998) and the Social Security (Scotland) Act 2018 (the “2018 Act”) afford the Scottish Ministers relevant powers and competency to create a new terminal illness social security benefit. As the 2018 Act confers operational and regulatory powers on Social Security Scotland as the agency responsible for implementing devolved assistance, it is recommended that a new Terminal Illness benefit is created and delivered by this agency. The 2018 act provides regulation-making powers to establish a new “form of assistance” that is within devolved competence. 

A new benefit will still require updated clinical guidance (for example, revisions to the Chief Medical Officer’s guidance on terminal illness), healthcare staff guidance and payment infrastructure. However, it is anticipated that existing systems and processes for SRTI in current disability benefits provide an established route that can be reused for this new benefit.

Therefore, to provide support that more closely recognises the high essential energy usage of terminally ill consumers through a bespoke platform, the creation of a new benefit is Consumer Scotland’s recommended approach.