Beyond pain, life-long and life-threatening impacts
The pain episodes (crises) associated with sickle cell disease (SCD) can strike without warning when sickle cells block blood flow and decrease oxygen delivery. Often the pain is localized to where the blockage is occurring: lower back, legs, arms, abdomen or chest, for example. While many of us have experienced mild discomfort or muscle pain associated with cold, an SCD crisis is on another level. People describe this pain as sharp, intense, stabbing, or throbbing. For some, a severe crisis can be even more intense than post-surgical pain or childbirth. For others, it is more a question of living with chronic pain, which can be debilitating to daily life.
If the SCD sufferer’s red blood cells get concentrated and stuck in the spleen, other risks arise. Two primary functions of the spleen are to filter germs and to produce white blood cells that can fight infection. If the red blood cells get trapped, fewer are available to circulate in the body and severe anemia can occur. Over time, sickle cells can damage or weaken the spleen, destroying its function and leaving people more at risk for serious bacterial infections, some of which can be life-threatening.
Young people with SCD who are chronically cold and at risk of a crisis can also be negatively affected in terms of how well nutrients are delivered through the blood stream, causing delayed growth in infants and children, or delayed puberty in teenagers. Children with the condition are at risk of stroke, with the peak age being 2 to 4 years of age. In fact, SCD crisis is the most common cause of childhood stroke in the United Kingdom. Some people end up with sickle cells getting clogged in the tiny blood vessels that supply their eyes, which can damage the retina and lead to visual impairment.
Migrants particularly at risk when SCD and cold interact
SCD is a genetic condition, more common in people from Africa, India, Mediterranean countries, Saudi Arabia, the Caribbean islands, and South and Central America. In the UK context, many people who migrate from these regions are already at risk of poverty in general, and therefore at higher risk for fuel poverty. An added complication is that they often live in social housing or rented accommodation, the latter being more likely to be in poor condition and not energy efficient. They may not understand heating systems or heating bills and payments, and are not typically empowered to get their landlord to make improvements or deal with the customer services of energy companies that even native British people find difficult to manage.
Asylum seekers from West Africa, where the highest concentration of people with SCD is found, face additional challenges. Parents may be carriers of disease but have no previous experience of caring for an inflicted child, so are learning as they go along. Even if they have experience of caring for someone with SCD in the tropical climate of their home country, they may have little knowledge or experience of the effects of cold. As a crisis induced by cold may have serious consequences such as stroke, the cost of making a mistake or misreading the situation can be very high for the person afflicted.
New approaches could reduce personal and public costs
One recent study  found that people with SCD in the North and Midlands of England cited multiple examples of when being cold led immediately to hospitalisation. Several described how they struggle to maintain a steady enough income to put money on pre-payment fuel meters in order to keep their houses warm enough to be pain-free.
Additionally, as the condition is fluctuating in nature, it was not always understood by staff conducting welfare assessments. People with SCD often fall between the posts of not being well enough to keep up a job, but not being assessed as disabled – and therefore not eligible for assistance.
That oversight comes at a cost to the healthcare system. The study estimated that the cost of just one hospital admission of a few days to be about 14 times the cost of an annual fuel bill. Clearly, providing support for a viable and cost-effective heating solution could reduce costs of SCD for both health and social care services.
The results of the SCD research were presented to the UK Parliamentary Under Secretary of State for Climate in the Houses of Parliament in July 2016. In a context of zero government-funded initiatives for energy efficiency and fuel poverty, they are a prime example of how cost-effective fuel poverty interventions could reduce costs for health and social services. To date, no further action has been recorded.
SCD is not the only chronic, debilitating condition that is exacerbated by being cold at home. Other studies show that people with fluctuating conditions such as Multiple Sclerosis, Parkinson’s, arthritis or mental health problems also face particular challenges in keeping their homes warm enough to keep their conditions under control.
 Anna Cronin de Chavez and Catherine Homer, Sheffield Hallam University. Funded by Chesshire Lehman Fund. http://shura.shu.ac.uk/10660/3/Chavez_Keeping_Warm_with_Sickle_Cell__Research_Project_Report_for__Chesshire_Lehmann_Final_for_publicationv2.pdf