Keeping warm with sickle cell disease research project

Sickle cell disease (SCD) is the most common inherited disease in the UK. Painful crisis can require several days of hospitalisation and lead to stroke, organ failure and death. Exposure to cold is one of the principle triggers for a crisis. Research by Sheffield Hallam University involved interviews with 15 adults with SCD or parents of a child with SCD from Yorkshire, Manchester and the Midlands and some home temperature readings were recorded. Multiple examples of where cold exposures led directly to hospitalisation were cited. Whilst maintaining a warm home was an extremely high priority, the ability to heat the home was challenged by low and unpredictable incomes. Employment was difficult to maintain due to frequent episodes of illness, yet they found it problematic to qualify for disability benefits because SCD is a fluctuating condition. Participants reported being sanctioned for not signing on while hospitalised, resulting in self-disconnection from heating and immediate risk of further hospitalisation on being discharged. The cost of a short stay in hospital for SCD is seven times the cost of an average annual fuel bill, making warm interventions potentially highly cost-effective in preventing sickle crisis. People with other fluctuating health conditions may experience similar problems.