Rt Hon Jeremy Hunt MP
Chancellor of the Exchequer
1 Horse Guards Road
Westminster
London
SW1A 2HQ
1 November 2023
Dear Chancellor
As organisations which support people living with terminal illnesses, we are writing to you ahead of the Autumn Statement on 22 November to urge you to use the Statement to extend ongoing, targeted support with the cost of energy to terminally ill people this winter.
The ongoing cost of living crisis, and particularly the cost of energy which remains high in historic terms, has hit people living with a terminal illness particularly hard. Many of the people our organisations support face energy bills substantially higher than the average household and are struggling to afford the cost of energy. Their additional energy needs include heating their homes for longer and to a higher temperature to reduce symptoms and storing medications. Additionally, many use more energy to power at-home assistive and medical devices that they rely on as part of their treatment – in many cases, which they rely on to stay alive.
Many of these people, and their families, are already facing significant financial insecurity due to their conditions and are struggling to heat their homes. In the worst cases this can be a matter of life and death – research by University College London and the Institute of Health Equity estimates that as many as 21.5% of excess winter deaths may be attributable to cold homes. Ensuring that targeted support that is tailored to their specific needs reaches these households this winter is vital.
Much of the support with energy costs made available by the UK Government in 2022-23 has been based on the needs of an average household – for those living with terminal illness, this has often been insufficient to meet the high energy costs they face. We recommend that the Government makes available additional, targeted support for these households in the Autumn Statement.
Firstly, we recommend that all households including a person living with a terminal illness and on a low income are automatically eligible for the Warm Home Discount scheme. At present, the Warm Home Discount is only available automatically to those on Pension Credit or people on low incomes living in homes likely to have ‘high energy costs.’ Many terminally ill people will not automatically qualify under these criteria.
Treating all households including a person with a terminal illness as meeting the criteria for having ‘high energy costs’ for purposes of eligibility for the Warm Home Discount would recognise that these households typically face exceptionally high costs of energy even if they are not living in a property which is energy inefficient, as a result of having higher levels of energy need. It should be noted that the Warm Home Discount operates differently in Scotland and is not available in Northern Ireland; the Government should support the devolved administrations to take their own measures to ensure people living with terminal illness get targeted support with the cost of energy this winter.
Secondly, we recommend that the Department for Energy Security & Net Zero should work with the Department for Health & Social Care to improve how the cost of running at-home medical devices is refunded to patients. Many people living at home with a terminal illness, or chronic conditions that may become terminal, rely on medical devices such as dialysis machines, ventilators, oxygen concentrators or other devices as part of their care and treatment. The cost of powering these devices can be significant, with research by Marie Curie showing that the cost of running an oxygen concentrator could be £65 per month, a ventilator £35 per month and a body drier £32 a month at July 2023 energy prices.
However, rebate schemes for the cost of running these devices to patients are inconsistently administered, with some schemes refunding patients only three months in arrears, some not refunding the full cost that patients incur and some common devices having no rebate scheme at all. These patients are in effect paying out-of-pocket for the cost of their own care. Ensuring that all common medical devices are covered, patients are refunded the full cost of the energy their device uses and paid upfront rather than in arrears would greatly improve these rebates. This would provide vital, targeted support for people living with a terminal illness, and others with long-term or chronic conditions who rely on medical devices as part of the treatment for their condition, 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.
Finally, it should be recognised that the additional energy needs people living with a terminal illness have impact households all year round and not just over the winter months. We recommend that the UK Government should consider the introduction of a social tariff on energy prices for those most in need, so that energy remains affordable for people living with terminal illness, and other vulnerable consumers, all year round.
By supporting people to continue receiving their care and treatment at home, you would also reduce the risk of unplanned hospital admissions and pressure on primary services and NHS hospitals. With the average cost of an inpatient NHS palliative care bed, for example, being £349 per day, these savings could be substantial.
We ask that you bring forward these measures in the Autumn Statement to ensure that nobody living with a terminal illness is left unable to heat their home this winter.
Yours sincerely,
Dr Sam Royston, Executive Director of Research and Policy, Marie Curie
Toby Porter, Chief Executive, Hospice UK
Emma Vasey, Head of Influencing and Engagement, Sue Ryder
Caroline Abrahams, Charity Director, Age UK
Paul Bristow, Chief Executive, Kidney Care UK
Alex Massey, Head of Campaigning, Policy & Public Affairs, Motor Neurone Disease Association