Patient Public Voice Group

Voices of patients and the public shape the work of the West London Haemoglobinopathy Coordinating Centre (HCC).

The Patient and Public Voice (PPV) group held its first ever meeting on the 23rd of September 2020. Since then, the group continues to steer the work of the HCC, identifying key areas of work and discussing how its resources can be used to improve patient outcomes.

The group is chaired by Patrick Ojeer a knowledgeable campaigner on the improvement of Sickle Cell services. The group meets on the last Thursday night of the month via Teams.

If you would like to attend the meetings, please contact our team by clicking here

The members represent a wealth of lived and professional experience, many working across the charity and public sectors, participating in a vast network of local support groups, patient collectives, and also the arts. Some of their activities include:

• Assisting with the development of the Community Improvement and Hyper Acute Unit projects.
  
  
• Timely monitoring of emergency service metrics at the specialist hospitals (SHTs) of the HCC which has resulted in improvements, providing excellent user feedback on the emergency pathways of both SHTs and LHTs in the Network.
  
  
• Participating in the set-up and distribution of the patient survey for the region.

• Co-designing helpful pages for the HCC website such as citizen advice and Wellbeing resources.
  
  
• Group members have also contributed to national reviews into Sickle Cell care and literature, including but not limited to the landmark All-Party Parliamentary Group report ‘No One’s Listening’ (2021).
  
  
• The group has recently embarked on a new chapter of patient-led collaboration in research whilst continuing to raise awareness of clinical trials and studies across the region.

 

The group also shapes the HCC’s education programme, co-designing the following education sessions which are linked here:

19.01.2025 Sickle Cell: Cardiac issues and management

 

 

15.01.2025 Thalassemia: Overview and Management

 

 

15.01.2025 Sickle Cell: A Socio-Cultural Perspective