Analysis

Self-care is key in sickle-cell disease

A nationwide survey of people living with sickle cell disease in England has revealed that information provision and lack of public awareness of the condition are some of the biggest issues affecting their experiences and the care they receive

A nationwide survey of people living with sickle cell disease (SCD) in England has revealed that information provision and lack of public awareness of the condition are some of the biggest issues affecting their experiences and the care they receive.

The results highlighted specific concerns about the provision of urgent and emergency care, with many people reporting less positive experiences of emergency department (ED) attendance compared to planned tertiary care.

While more than three quarters (76%) of respondents said that planned care staff know enough about SCD, less than half (46%) said that ED nurses and doctors do.

The reports main findings include:

  • Clinical awareness and knowledge of the condition are lacking particularly in emergency care.
  • Healthcare staff do not provide enough information externally, for example to schools and workplaces.
  • Specialist-led planned care is viewed more positively than care in urgent and
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A nationwide survey of people living with sickle cell disease (SCD) in England has revealed that information provision and lack of public awareness of the condition are some of the biggest issues affecting their experiences and the care they receive.

The results highlighted specific concerns about the provision of urgent and emergency care, with many people reporting less positive experiences of emergency department (ED) attendance compared to planned tertiary care.

While more than three quarters (76%) of respondents said that planned care staff know enough about SCD, less than half (46%) said that ED nurses and doctors do.

The report’s main findings include:

  • Clinical awareness and knowledge of the condition are lacking – particularly in emergency care.
  • Healthcare staff do not provide enough information externally, for example to schools and workplaces.
  • Specialist-led planned care is viewed more positively than care in urgent and emergency care settings, including EDs.
  • Londoners have more confidence in the care they receive than people receiving treatment outside the capital.
  • More negative survey responses from adolescents and young adults aged 16-20 – the age they are likely to transfer to adult services – than from other age groups.
Less knowledgeable

Respondents said that emergency care staff were less knowledgeable, less sympathetic and less understanding of their needs than nurses and doctors in acute and specialist care.

In particular, adults with sickle cell disease had less confidence in the knowledge of emergency care staff, preferring to self-manage as much as they could at home and regarding emergency treatment as a last resort.

One in three respondents received too little information about pain relief and self-care. Despite these findings, emergency care settings are often the first port of call for children with the condition and their parents.

Call for greater education

Chief executive of the Sickle Cell Society John James has called for greater education about the disease, the UK’s most common genetic blood disorder, and its symptoms for healthcare staff.

‘Awareness could potentially be the difference between life and death and these results signal an urgent need for improvement,’ he says. ‘It is so easily rectified [by] better education for healthcare staff and the general public, and more investment in information resources about pain management.

‘Self-care is key for long term condition management, and relieving our overstretched emergency care services in general.’

The survey, the first of its kind in England, was a patient reported experience measure which ran from March to October 2015. It was commissioned by researchers from the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care Northwest London, based at Imperial College London and Chelsea & Westminster Hospital, in partnership with the Sickle Cell Society.

More information

Piloting a New Patient Reported Experience Measure for Sickle Cell Disease

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