24 November 2022

Significant healthcare inequalities remain in the UK for people living with sickle cell disease (SCD), campaigners say.

Full results from the Sickle Cell Health Awareness, Perspectives and Experiences (SHAPE) survey, published this week, come a year after the ground-breaking report, “No One’s Listening”, by the All-Party Parliamentary Group’s on Sickle Cell and Thalassaemia and the Sickle Cell Society on sickle cell care in the UK.

The survey has found SCD significantly impacts many aspects of people living with the condition and those who care for them.

John James, chief executive of the 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 was an online survey carried out in ten countries to understand the impact of SCD and quality of life of patients and caregivers. Of the 919 patients and 207 caregivers interviewed globally, 151 patients and 30 caregivers were from the UK.

The UK SHAPE data showed people with SCD experienced fatigue/tiredness, headaches and bone aches, and missed an average of 7.9 days of school or work per month, equivalent to more than three months missed per year.

More than half (56%) of patients said they were concerned they would not succeed in education or work because of their SCD, while 72% believed they could be regarded as less competent when compared to their colleagues or fellow pupils.

Fatigue was the most common physical symptom of SCD, experienced by 90% of SHAPE survey patient participants in the past year, while 74% experienced low-mood and/or depression.

Most patients (87%) believe society does not view SCD as important as other conditions. 64% reported having had poor care from emergency medicine professionals due to a lack of knowledge about the condition.

Caregivers told the survey they lost an average of 6.1 days of school or work per month, equating to almost 2.5 months missed per year, to care for someone living with SCD.

Caring responsibilities meant that 57% of caregivers felt their earning potential was reduced, while 53% said it could affect their ability to attend and succeed at school or work. Out of the caring cohort, 80% said they had made sacrifices in the type of jobs they do.

Professor Baba Inusa, consultant in 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.”

Source: Sickle Cell Society

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