- Scleroderma and Raynaud’s UK (SRUK) is appealing to energy companies to provide financial assistance to people with the chronic health condition Raynaud’s.

- Energy companies have the power to provide extra support to those they class as ‘vulnerable’ through schemes such as the Priority Services Register – people with a long-term medical condition should be eligible, but almost all companies fail to recognise Raynaud’s as a health issue.

- Raynaud’s affects blood circulation and causes painful and debilitating ‘attacks’ in response to cold temperatures or stress

- People with the condition rely on their heating to prevent Raynaud’s attacks, but a survey by SRUK found that many people have found it much harder to afford their energy bills this winter than the year before, and more than 1 in 10 have cut back on food bills to prioritise their heating

- Although the Energy Price Cap for an average household is set to decrease between April and June, many people with Raynaud’s who experience attacks year-round are likely to face higher-than-average bills.

The charity Scleroderma and Raynaud’s UK (SRUK) is calling on the UK’s energy companies to recognise Raynaud’s as a legitimate health condition that leaves people vulnerable to the cold and therefore eligible for additional support to help keep their heating bills affordable.

Raynaud’s is a chronic condition that affects blood circulation. It causes painful ‘attacks’ in response to cold temperatures and stress, which is when the blood supply temporarily stops flowing to the body’s extremities, such as the hands, feet, ears and nose. These attacks are characterised by the skin changing colour to white before taking on a blue-ish tinge, and the affected areas feeling numb. As the blood returns, the skin changes colour again to red and the sensation can be extremely painful.

Raynaud’s can be a debilitating condition; it affects fine motor skills that make everyday tasks like buttoning up a coat, preparing food, using a smartphone or handling bank cards extremely difficult. In more severe cases, it can also make walking and driving virtually impossible. One of the best ways to prevent Raynaud’s attacks is to keep warm, but with the continued high cost of energy, this is becoming impossible for many.

Patience Bradley, 59, was diagnosed with Raynaud’s when she was 16. The model and author from Holywood, Northern Ireland, who also lives with the autoimmune condition scleroderma, is backing SRUK’s call to keep heating affordable for those with the condition.

She says: “My hands can go into an attack at the slightest thing. When they get cold, I have no feeling in them and end up dropping things. I also have to drive an automatic car as I can struggle with changing gears when cold. It would be brilliant if the energy companies would provide more support as people shouldn’t have to choose between feeling well and keeping warm in their own homes.”

Energy companies can provide additional assistance to people they class as ‘vulnerable’ through the Priority Services Register and other types of support schemes. This should include people with long-term health conditions, but five out of six of the biggest energy companies in the UK contacted by SRUK refused to confirm if they recognise Raynaud’s as an eligible condition. This is despite people with Raynaud’s relying on their heating to stay well.

Sue Farrington, SRUK Chief Executive, said: “Too often we hear how our energy suppliers are banking huge profits while millions of people are struggling to pay their bills. For many people with Raynaud’s, this is putting their health at risk.

“Raynaud’s is an incurable condition with limited treatment options that we know worsens in cold temperatures, so it’s essential that people can stay warm in their own homes. Sadly, many people with Raynaud’s tell us they’re choosing to keep their heating off because they worry about their bills. Others are choosing to cut back on food to prioritise their energy bills.

“People should not be suffering in their own homes because they are worried about their bills. We need energy suppliers to step up and provide support for those living with Raynaud’s so that they can be comfortable without having to choose between health and warmth.”

In letters to six of the UK’s main energy companies – British Gas, EDF Energy, E.ON Energy, Octopus Energy, Ovo Energy and ScottishPower – SRUK asked that they recognise Raynaud’s as a condition requiring extra support. Only one supplier, EDF Energy, confirmed that they already class Raynaud’s as a vulnerability that is eligible for additional support, including help with bills.

At the same time, the charity is urging the government to take action ahead of the Spring Budget, by expanding the Cost of Living Payment criteria to include people with Raynaud’s and exploring practical solutions to help people living with Raynaud’s through the winter, such as a national roll-out of the Warm Home Prescription. The charity says support could be funded by using a proportion of the money raised by the ongoing Energy Profits Levy as well as other options such as the Household Support Fund.

Notes to Editors

Around one in six people in the UK live with Raynaud’s

Around three million people with Raynaud’s will experience painful attacks all year round, including during the summer

For about 300,000 people with Raynaud’s, the condition is caused by an underlying condition such as the life-limiting autoimmune condition scleroderma.

Earlier this month, Ofgem announced that the Energy Price Cap is set to fall to £1,690 for an average UK household from 1 April to 30 June 2024. However, for people severely affected by Raynaud’s who experience painful attacks year-round, energy bills are likely to remain high, especially with the increase to standing charges for gas and electricity.

SRUK energy campaign

SRUK launched its Raynaud’s energy campaign in November 2022 following a survey that found the health of people with Raynaud’s was being put at risk by high energy bills and the cost-of-living crisis. More information is available at (https://www.sruk.co.uk/about-us/news/raynauds-energy-campaign)

In March 2023, the campaign received support from the now Shadow Minister for Skills and MP for Feltham and Heston, Seema Malhotra: (https://www.sruk.co.uk/about-us/news/shadow-business-minister-backs-sruks-calls-energy). The campaign has also received support from Conservative MP for Chipping Barnet and former Cabinet member Theresa Villiers, Fleur Anderson, Shadow Minister for Northern Ireland and Labour MP for Putney, and Conservative MP for St Ives, Derek Thomas.

SRUK re-ran its energy survey in 2023 between 24.10.2023 and 10.11.2023. In total, 1,198 people answered the survey, of which 1,162 reported living with Raynaud’s. Results included:

- 51% of people living with Raynaud's said it had become more difficult to pay their energy bills compared to this time last year

- 29% reported that they were finding it equally as difficult as last year to pay their energy bills

- 52% of respondents living with Raynaud’s believed stress caused by the cost-of-living crisis has been a major trigger of Raynaud’s attacks this year

- 62% said they have experienced a Raynaud’s attack due to choosing not to put their heating on because of the cost

- 57% said they had not received any additional help through the Cost of Living Payments this year

- 57% of people living with Raynaud's do not trust the government to act in the best interests of the public when it comes to tackling the cost-of-living crisis

- To try to make their energy bills more affordable, more than one in 10 (13%) of respondents living with Raynaud’s are buying less food to prioritise their energy bills.

In response to its survey findings, SRUK wrote to six of the main energy companies to find out what support they provide to people with a diagnosis of Raynaud’s. These were: British Gas, EDF Energy, E.ON Energy, Octopus Energy, Ovo Energy and Scottish Power. Of these, only two responded: EDF Energy and Scottish Power. Only one – EDF Energy – confirmed that they class Raynaud’s as a vulnerability and that people with this condition may be able to benefit from additional support.

About SRUK

Scleroderma and Raynaud’s UK (SRUK) is the only UK charity dedicated to improving the lives of people with Scleroderma and Raynaud’s phenomenon. We are here to improve awareness and understanding of these conditions, to support those affected, and ultimately, to find a cure. Our aim is to reach out to every single person who has a Scleroderma or Raynaud’s diagnosis, providing them with the information and support they need. By creating connections between people with the conditions and professionals, we have built a motivated community that shares knowledge and support, works in partnership on research projects, and speaks up about Scleroderma and Raynaud’s. We have a stronger voice together.

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