Keeping Well with Sickle Cell Project


Keeping Well with Sickle Cell Project

The Keeping Well with Sickle Cell project was a holistic programme aimed at improving the health and well-being of people with Sickle Cell Disorder. A number of activities, workshops and events were delivered over the past 12 months that included:

  • Expert Patient Programme
  • Coffee mornings
  • Cook and Eat sessions
  • Training and Education
  • Community days

Supported by Big Lottery Awards for All, the project was officially was officially launched on 4th June 2017 during a Community Family Fun Day held at Soho House Museum. This event provided an opportunity for the public, families and professionals to learn more about the programme in addition to accessing health related information and hearing from speakers on the day. 

A 6-Week Health Workshop Programme

The Expert Patient Programme (EPP) helped people affected by sickle cell to take more control of their health by learning new skills to manage their condition better on a daily basis. The programme encouraged participants to be an active self-manager, through the following sessions: 

  • Taking control by managing symptoms (fatigue, pain, shortness of breath, hydration and sleep)
  • Nutrition and healthy eating
  • Movement & physical activity for fun & fitness 
  • Managing medication 
  • Communication & relationships 
  • Stress management & planning for the future 

Monthly Keeping Well with Sickle Cell Drop in a Health Cafe

This was opportunity for people affected by sickle cell to:

  • Meet new people and make friends
  • Find out about other groups / services in the community
  • Reduce feelings of loneliness

Training and Courses

As part of the project 24 participants also successfully completed short courses and achieved qualifications in First Aid and Food Safety.

Making a Difference

 As part of monitoring and evaluation, thirty-six participants completed a self-assessment questionnaire based on a self-rating scoring system on a number of statements. A number of follow up interviews were conducted. The findings identified the following: 

  • 95% of participants highlighted that they had been able to learn from their experience on project.
  • 100% of participants were able to meet and connect with other people.       
  • 90% of participants found events and workshops interesting and informative.
  • 100% stated they were more confident and happier