One year on since publication of the ground-breaking 'No One’s Listening Report' on sickle cell care in the UK, full results from the Sickle Cell Health Awareness, Perspectives and Experiences (SHAPE) survey reveal that significant healthcare inequalities for people in the UK living with sickle cell disease (SCD) persist.
Findings from the survey, which was developed by Global Blood Therapeutics (GBT), a wholly owned subsidiary of Pfizer, supports the conclusions of the ‘No One’s Listening Report’ published in November 2021 by the All-Party Parliamentary Group (APPG) on Sickle Cell and Thalassaemia in partnership with the Sickle Cell Society, which highlighted "serious care failings" in the healthcare of people in the UK with SCD.
The survey findings show that SCD significantly impacts many aspects of the lives of people living with the condition, including their overall physical and mental wellbeing and their ability to attend and be successful at school or work, therefore reducing their earning potential. The SHAPE results also demonstrate that the impact of SCD extends to those who care for people living with SCD and significantly affects many aspects of caregivers’ lives.
John James OBE, Chief Executive, Sickle Cell Society said: “The SHAPE UK data shows the stark reality for people living with SCD. This research confirms just how significant the inequalities in SCD care are for people living with the condition in the UK. I’m not surprised most patients and caregivers in the SHAPE survey believe SCD is not seen to be as important as other conditions by society – while this is their lived experience, it was also what we uncovered in our report last year. However, we hope to be able to use this latest data to continue to build our case for improved care for people living with this debilitating disease, as well as those who care for them. We will continue to advocate for better disease management to help improve quality of life and maximise the potential of all those affected by SCD in the UK.”
SHAPE survey patient and caregiver results
SHAPE was administered as an online survey in 10 countries to understand the impact of SCD and quality of life (QoL) of patients and caregivers; of 919 patients 2 PP-UNP-GBR-2689 November 2022 and 207 caregivers interviewed globally, 151 patients and 30 caregivers were from the UK.
- The UK SHAPE data showed people with SCD who experienced fatigue/tiredness, headaches or bone aches, either in school or at work, missed an average of 7.9 days of school or work per month (equivalent to over 3 months missed per year).
- More than half (56%) of patients worry they are unable to succeed in education/work because of their SCD1 and 72% were concerned they would be seen as less competent in comparison to their colleagues or pupils1
- 74% of patients experience low-mood and/or depression.
- Fatigue/tiredness is the most common physical symptom of SCD experienced by 90% of SHAPE survey patient participants in the past year.
- Most patients (87%) believe that SCD is not seen to be as important as other conditions by society.
- 64% of patients reported they had experienced poor care in the past from emergency medicine professionals due to a lack of knowledge about SCD.
Dr. Baba Inusa, professor and consultant of paediatric haematology, Guy’s and St Thomas’ NHS Foundation Trust, London and chair of the National Haemoglobinopathy Panel in England said: “People living with SCD experience progressive and life-threatening complications, including damage to major organs such as the liver, kidneys, lungs and heart which negatively impact quality of life and reduce life expectancy. Results from the SHAPE survey emphasise the importance of understanding patients’ needs, and by working together we can help to improve patients’ quality of life. It is also important that caregivers are given the support they need, particularly as caring for someone with SCD impacts their own ability to work or attend school and also impacts their earning potential.”
SCD affects approximately 15,000 people in the UK.2 People living with SCD experience progressive, serious complications and morbidities, including organ damage, which lead to decreased quality of life and early mortality. Furthermore, economic disadvantages and health inequalities experienced by many patients with SCD can have negative societal impacts in areas such as access to healthcare, education and employment.
Mr Nigel Nichols, General Manager of GBT UK said: “We know that people living with SCD in the UK face ongoing health inequalities; results from the No One’s Listening Report and our SHAPE survey confirm this. These inequalities arise due to several factors, including a lack of understanding about the condition, combined with the fact it is more common in people of African or African-Caribbean origin, who tend to have poorer health outcomes and experience higher levels of social deprivation than other ethnicities in the UK. It is therefore crucial that we continue our work to raise awareness of these inequalities, so that we can better understand the impact of SCD across all aspects of peoples’ lives, and most importantly so we can work together to make a positive change for those living with the condition and those who care for them.”