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.

See some of the work from other PPV members

Laurel Brumant-Palmer

 Let me firstly introduce myself to you all, My name is Laurel Brumant-Palmer,

I am 54 years old and was diagnosed with Sickle Cell Disease at the age of 3 years old. I want to share my story with the world because I think it is really selfish to keep it to myself. The blessings that I have received in my life are almost unexplainable. I am where I am and I am shocked that I am where I am. Why? Because I died several times in my heart my mind and my soul.

I really want to inspire and encourage everyone who is struggling and suffering constantly with regular admissions to hospital and all the struggles mentally and physically that come with suffering from Sickle Cell Disease.

I have struggled and at times I just wanted to give up especially when experiencing so many painful crisis and having them constantly control my life.

My story will tell of my struggles as a teenager when nobody had heard of Sickle Cell Disease and how I dealt with major challenges in my adult life.

How did I get to the place that I am at presently? It was hard and it is still very difficult but a happy, positive, fighting spirit filled with enormous faith and perseverance has helped me on my journey.

I am so excited to share my story with you and hope that someone will be able to identify with my experiences and that I will be able to reassure and help individuals to have the confidence to believe in themselves. I suffer from Sickle Cell Disease but Sickle Cell Disease is not me.

To see Laurel’s artwork click here

Kye's Sickle Cell Guide

Kye Gbangbola was Chair of the Sickle Cell Society, the award winning national patient organisation in the UK, for nearly a decade. He received widespread praise for his leadership, advocacy, and for his powerfully inspiring and motivational speaking, and lectures.

Moved, amazed, and outraged! This is a game changer for sickle cell warriors of all ages living with the condition, their families, and carers. The Sickle Cell Guide provides an encyclopaedic knowledge of sickle cell disease, making it an essential read for medical professionals—from students to well seasoned consultants, medical directors, and policy makers. It quietly and humbly sets a new bar for books on sickle cell disease, of which there are few. The book may inspire many more individuals on their journey to change the impacts and outcomes of living with sickle cell disease, after decades of scientific and medical inequity and neglect.

To read his book "The Sickle Cell Guide—equity for patients" click here