On April 20th, the results from the first patient experience survey of people living with Sickle Cell Disease (SCD) across England were published. NIHR CLAHRC NWL, in partnership with the Sickle Cell Society, commissioned the development and implementation of the survey with the design done by the Picker Institute, a not for profit charity.

The results revealed information provision and lack of public awareness of the condition are some of the biggest issues affecting their experiences, and in turn, the people living with Sickle Cell Disease (SCD) they receive.

Dr Subarna Chakravorty, Clinical Lead on the project, appeared on London Live following the release of the results to discuss the results and reported lack of support for the most common inherited condition, Sickle Cell Disease.

Key Findings Include

  • A Need For Awareness: Clinical awareness and knowledge of the condition are lacking – particularly in emergency care
  • A Need For Social Understanding: Participants reported that their friends, family and co-workers did not know or understand enough about their condition
  • A Need for Shared Knowledge: Healthcare staff do not provide enough information externally (for example to schools and workplaces.)
  • Planned Care More Positive In Urgent Settings: Specialist-led (planned) care is viewed more positively than care in urgent settings such as A&E departments
  • London Leading In Building Confidence In Services: Londoners have more confidence in the care they receive than people receiving treatment outside of the region
  • Transitional Age Generation Feel Less Positive: More negative survey responses from adolescents and young adults (aged 16-20) than other age groups – this is the age that children are likely to be transferring to adult services

The results highlighted specific concerns about urgent care provision, with many people reporting less positive experiences of A&E attendance versus planned tertiary care. Whilst over three quarters (76%) of respondents felt that planned care staff knew enough about SCD, under half (46%) felt the same way about emergency care staff. Respondents felt that urgent care staff were not only less knowledgeable, but also less sympathetic and understanding of their needs, than their tertiary care colleagues.

Adults with sickle cell disease in particular had less confidence in the knowledge of emergency care staff, preferring to self-manage as much as they could at home and seeing emergency treatment as a very last resort. This comes despite the fact that one in three (38% of respondents) did not receive enough information about coping with pain and self-care. By contrast, for the majority of children and parents of children with the condition, A&E was the first route that they took.

Speaking on the reality of these findings John James, Chief Executive of the Sickle Cell Society; “Though not surprising to those in the SCD community, these results should represent alarm bells to us all. Not only is SCD the UK’s biggest genetic blood disorder, affecting more people than other conditions such as Cystic Fibrosis, but the condition is known for its invisible nature and defined by bouts of “crisis”. Where often outwardly people look well (despite the fact they are literally in agony). Awareness could potentially be the difference between life and death and these results signal an urgent need for improvement. It has massive impact on the quality of life people with the condition are able to have, but is so easily rectified, 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.”

Take a moment to look at the key findings in the following infographic

(Please feel free to download and share by clicking the image below)

P2906_SCD-Infographic-v1.4-060416-page-001

Further Information

Visit and download for more information about further findings

Access to the official Press Release

Download the Full Report

Life with Sickle Cell Disease

If you would like to see a hard hitting video of what’s it like to for a young person to live with sickle cell follow the link for Zayyir’s Story.

Listen to more stories at Patient Voices

 

For more information on Sickle Cell Disease visit:

For more information on screening for sickle cell

Useful Connections

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