Patient Public Voice Group

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

The work of the HCC is steered by the Public and Patient Voice group. The group meets once a month normally on the last Thursday night of the month, but the timing of this is may to change. The group discusses the work of the HCC and how the resources of the HCC can be used to improve patient outcomes and which areas should be worked on as a priority. If you would like to attend the meetings please contact Ralph Brown and Eni Kuseju by clicking here

The PPV are involved in the setting of elements of the HCC’s education programme including asking the HCC to hold the following education sessions which are linked here:

24.06.2022 Ophthalmology and Sickle Cell Dr Evelyn Mensah

28.06.2022 Diagnosis and Management of Thalassaemia Dr Asad Luqmani

11.10.2022 Dentistry for Sickle Cell patients Dr Navdeep Kumar

• The PPV group members have been involved in patient feedback sessions to Haematology departments and Emergency Departments
• The PPV group also assist the West London HCC with suggesting helpful webpages such as citizen advice for the patient public
• The PPV groups monitoring of emergency metrics at the specialist hospitals of the HCC has resulted in improvements being made to these services.
• Members of the PPV group have also contributed to national reviews into Sickle Cell care
• The PPV group has also been involved in the set-up and distribution of the patient survey for the region

The group is chaired by Patrick Ojeer a knowledgeable campaigner on the improvement of Sickle cell services.