Government must expand Cost of Living Payments to protect health of those living with Raynaud's Phenomenon

SRUK is urging the government to expand its Cost of Living Payment scheme to include those living with Raynaud’s Phenomenon – a chronic and painful health condition triggered by cold temperatures and stress. 

It comes after a survey of our community found that 51% of respondents living with Raynaud’s said that they are finding it more difficult to afford their energy bills this year than last winter with a further 29% reporting that they are finding it equally as difficult as last year [1]. 

Of the 1,162 people living with Raynaud’s who answered the survey, around six in 10 (57%) said they were not eligible for any Cost of Living Payments and more than one in two (52%) do not believe that Ofgem’s recently introduced lower energy price cap will result in cheaper energy bills. 

To keep their energy bills affordable, more than two in five respondents (41%) said they are finding other ways to keep warm at home, such as wearing thick jumpers and gloves. Almost one in four (23%) are cutting back on leisure activities, one in five (20%) are buying budget food options and more than one in 10 (13%) are buying less food overall to prioritise their energy bills. 

For people living with Raynaud’s, keeping warm is essential for preventing painful ‘attacks’. Cold conditions and stress can cause the small blood vessels in the body’s extremities, such as the hands and feet, to constrict and temporarily stop the supply of blood to those body parts. When this happens, skin colour can change to white and then blue and the affected areas can feel numb. When the blood eventually returns, the skin changes colour to red and the sensation can be extremely painful. 

Around 10 million people in the UK live with Raynaud’s and for roughly 300,000, it will be a symptom of an underlying autoimmune condition such as scleroderma. Raynaud’s attacks can make even simple everyday tasks such as cooking, shopping and unbuttoning a coat almost impossible. For some, even walking and driving can become extremely difficult. 

Sue Farrington, Chief Executive of SRUK, said: “We are concerned by the lack of support available to people with Raynaud’s, whose health and wellbeing rely on being able to stay warm. Far too many people continue to struggle to afford their heating and it’s particularly alarming that some are having to make an active decision to cut back on food to focus on their energy bills. 

“There is no cure for Raynaud’s but one of the best treatments is a warm home. No-one’s health should be put at risk because they are too scared or worried to turn on their heating. If the government is serious about improving health outcomes for patients, they must step up their support for people with Raynaud’s. This must start with some financial support to ease the immediate crisis, alongside other solutions to ensure people with this often debilitating condition can have a pain-free winter and Christmas.” 

In addition to an expansion of the Cost of Living Payment criteria, SRUK is also urging the government to explore 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. 

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The online survey by SRUK was conducted by the charity between 24.10.2023 and 10.11.2023 and promoted via its social media channels and newsletters. In total, 1,198 people answered the survey, of which 1,162 reported living with Raynaud’s. 

Results include:  

• 51% of people living with Raynaud's say it has become more difficult to pay their energy bills compared to this time last year 
• 29% reported that they are finding it equally as difficult as last year to pay their energy bills 
• 52% of respondents living with Raynaud’s believe 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 as a result of choosing not to put their heating on because of the cost. Of those, 58% said it is likely to happen again 

• 57% said they had not received any additional help through the Cost of Living Payments this year 
• 68% of people living with Raynaud's would like last year's universal £400 cost of living payment to be brought back this year. 

• 41% of respondents living with Raynaud’s are finding other ways to keep warm, such as wearing thick jumpers and gloves 

• 30% are only turning on the heating when absolutely necessary to prevent a Raynaud’s attack 
• One in four (25%) are setting their heating to a lower temperature than is comfortable 
• 22% of respondents living with Raynaud’s is choosing not to turn on their heating, even if the cold triggers a Raynaud’s attack 
• More than one in 10 (13%) of respondents living with Raynaud’s are buying less food to prioritise their energy bills 
• Only 3% of respondents said they are not making any changes to their lifestyle.