Government Must Act on Cost of Living to Protect Health of Millions With Raynaud's, Says SRUK

High energy prices and the cost-of-living crisis are putting the health of people with Raynaud’s at risk. That's why we have written an open letter  to the Chancellor of the Exchequer, Jeremy Hunt, urging him to provide some longer-term financial support for those living with Raynaud’s.

A survey, by SRUK, of more than 1,600 people with Raynaud’s suggests that as many as 7.7 million people in the UK are experiencing an increase in painful Raynaud’s attacks as a direct result of stress caused by the cost-of-living crisis [1].  

More than four in five people with the condition (83 percent) rely on their heating to prevent painful Raynaud’s attacks. Despite this, more than three in four (76 percent) say they have had a Raynaud’s attack because they were too worried about the cost of their energy bills to turn their heating on. 

Helen Lewis lives in Carmarthenshire in South Wales and says her Raynaud’s has gotten worse over the past year: “I used to have an attack a couple of times a week, particularly if I was outside in the cold, but now it happens every day, even in my own house. We haven’t even had any very cold weather yet. 

“Although I earn a good income, I’m still worried about the cost of heating. I work from home several days a week, so I’ve made sure my computer is in the sunniest spot in the house. Other days, I’ll compare the cost of travelling to work to the cost of heating my home, and if I know the weather is going to be particularly cold, I might decide to travel to the office that day.” 

Joy*, from Greater London, was diagnosed with secondary Raynaud’s in 2018. The 66-year-old, who also lives with psoriatic arthritis, a rare skin condition called morphea and scleroderma, says the prospect of a cold winter worries her enormously: “I’m terrified of the weather getting colder as anything below 20 degrees in the house triggers a Raynaud’s attack and I feel very unwell with it. 

“I’ve had horrendous attacks before and people don’t seem to realise how bad they can be. It’s awful because you just feel like you want to chop your hand off rather than go through the agony that an attack causes. 

“I can’t take any medication for my Raynaud’s as it made me feel very unwell, so I have to focus on preventing these Raynaud’s attacks from happening, which is why staying warm is so important.” 

Lynn, who lives in St Helens, says: “Before this crisis, I didn’t have to worry too much about putting the heating on, but now, I’ve had to rethink everything". 

Lynn has been living with secondary Raynaud’s and scleroderma for around 10 years and recently retired due to poor health.  

“I’m on a fixed deal at the moment, but that ends in February, and I don’t know what’s going to happen. I’m paying double compared with last year as it is, and I can’t afford to pay huge amounts. 

“I’ve made the decision to warm myself rather than my home, so I’m knitting hand warmers, fingerless gloves, leg warmers and a blanket. I’ve also got hot water bottles, scarves, extra jumpers, thermal t-shirts, silver-lined gloves and a foot heating device for when I really need it.  

“I’m supposed to have my house heated to at least 18 degrees, but I’ve not had the heating on at all. I’m worried about putting it on, and using energy in general, because of the cost.” 

Sue Farrington, Chief Executive of SRUK, said: “The ability to keep your home at a warm, consistent temperature is crucial for people living with Raynaud’s. Keeping your core warm is one of the best ways to manage the condition and prevent painful attacks. Unfortunately, energy prices are making this virtually impossible for many, despite the government’s current package of support. 

“We are consistently hearing from people how worried they are about turning on their heating and many are putting their health at risk by not doing so. The stress of the whole cost-of-living crisis is also making their condition worse.” 

Calling for change 

Ahead of the Autumn Statement next week, SRUK is urging the Chancellor to consider: 

• extending the Energy Price Guarantee for vulnerable groups, to include people with Raynaud’s 
• increasing the Energy Profits Levy with a particular focus on the biggest oil and gas companies, such as Shell and BP who have recently posted record multi-billion-pound profits, and using a proportion of the extra money raised to provide financial assistance to those with conditions like Raynaud’s whose health depends on affordable heating
• including Raynaud’s as a criterion for the annual Warm Homes Discount. 

Currently, almost one in four people with Raynaud’s (23 percent) are paying £500 or more per month for their energy bill compared with just over one in five (21 percent) 12 months ago. The number of people paying £700 or more for their energy bill each month has almost doubled in that same period of time. 

Sue added: “Affordable heating is vital for people living with Raynaud’s. As the government develops its long-term tax and spending plans, we urge the Chancellor and Prime Minister not to forget about the often-ignored needs of people with Raynaud’s so that they do not continue to suffer in silence.” 

Read SRUK’s open letter to the Chancellor of the Exchequer  

* Name has been changed 

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SRUK’s energy survey 

1. The survey, by SRUK, was conducted between 01.10.2022 and 24.10.2022, and promoted via its social media channels and newsletters. In total, 1,932 people answered the survey, of which 1,647 reported living with Raynaud’s. 

Data extrapolations are based on the total number of people in the UK currently believed to be living with Raynaud’s (10 million people). 

Survey results include: 

• 77% of people with Raynaud’s believe their condition has worsened because of stress caused by the cost-of-living crisis 
• 83% of people living with Raynaud’s-said they rely on their heating to prevent painful Raynaud’s attacks. 
• More than 4 in 5 (82%) worry about the cost of their energy despite the government’s current package of support. 
• More than 3 in 4 people with Raynaud’s (76%) say it has become more difficult to pay their energy bills. 
• An estimated 7.6 million people with Raynaud’s (76%) have experienced a painful Raynaud’s attack due to not turning their heating on because of the cost. 
• The number of people with Raynaud’s paying £700 or more for their energy bill each month has almost doubled within the last 12 months. 

To try to make their energy bills more affordable:

• 1 in 5 (20%) are choosing not to turn their heating on despite the risk of painful Raynaud’s attacks 
  
• 1 in 4 people(25%) are buying budget food items more often to prioritise spending on energy bills while nearly1 in 5 (19%) are buying less food overall
• 23% of people said they are cutting back on leisure activities to be able to afford their energy bills and 17% said they are socialising less