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People with sickle cell disease as active participants in a project to improve the primary care experience in northwest London

2012 Conference

Abstract: The aim of the project supported by the National Institute for Health Research Collaboration for Leadership and Applied Health Research and Care and NHS Brent is to improve the quality of primary care for patients with sickle cell disease.

The team developed processes for meaningful involvement with users from the outset of the project, involving patients and carers at all levels.

Specific programmes

  • We worked closely with a patient support group to understand the experience of people with sickle cell disease.
  • Patients and their carers were involved in delivering training sessions to healthcare professionals.
  • Patients and carers from the Sickle Cell Society became members of the project steering group.

Enablers and Barriers – The importance of building in resources and tools for effective engagement of users.

Positive outcome – Effective user involvement will have a huge impact on acceptability of any changes and improvements that are being introduced.

What issues will you raise for discussion?

  • Whilst the benefits of involving users/carers outweigh barriers there are certainly challenges for both patients and the professionals they work with.

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Authors

Green ~ Stuart

Stuart Green is a Public Health Research Fellow at Imperial College London. Stuart has extensive knowledge of developing patient information resources and is working with Sickle Cell society on improved systems for data collation and management.

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Ndive ~ Comfort

Comfort Ndive is a Regional Care Coordinator at Sickle Cell Society and has developed a range of programmes to support sickle cell patients and their families nationwide.

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Ojeer ~ Patrick

Patrick Ojeer sits on the Board of Sickle Cell Society and has over 20 years experience of work in the sickle cell field.

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Okoye ~ N V Ogo

Ogo Okoye is currently the Head of Public Health Delivery at NHS Brent. Ogo has long standing experience of working with patients and community groups developing services in mental health and primary care settings. Ogo is the project manager of NIHR CLAHRC Brent Project which aims to improve the care of Sickle Cell Patients in Primary Care.

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