Patient Support
Our patient support is a dedicated space for individuals and families affected by sickle cell disease. Here, you can connect with support groups, explore social platforms tailored to the sickle cell community, and discover programs designed to provide care, education, and empowerment. Whether you're seeking connection, information, or assistance, this is your place to find support
Sickle Cell Society
The Sickle Cell Society is the only national charity in the UK that supports and represents people affected by a sickle cell disorder to improve their overall quality of life.First set up as a registered charity in 1979, the Sickle Cell Society has been working alongside health care professionals, parents, and people living with sickle cell to raise awareness of the disorder. The Society’s aim is to support those living with sickle cell, empowering them to achieve their full potential.
The Sickle Cell Society believes that individuals with sickle cell have the right to quality care. This can only be achieved if funding is made available to educate health carers and other professionals about the condition. The Society aims to provide this. The Society does not discriminate between the types of sickle cell disorders or the ethnic groups concerned. Both sexes are equally affected, and should have equal access to support and services within a confidential and sensitive environment. We respect the views of every patient.
They have a network of committed volunteers, who play an important part in running the charity, providing administrative backup, and helping with fund-raising activities.
For more information click here
Work Well Alliance
The West London Alliance (WLA) is a public sector partnership between seven West London local authorities of Barnet, Brent, Ealing, Hammersmith & Fulham, Harrow, Hillingdon and Hounslow. Our team delivers initiatives in the sub-region, working across borough boundaries and focussing on the priority areas of: economy and skills, employment support, mobility and transport, housing, health and care, and digital.
As WLA boroughs we work together and form partnerships to develop, drive and deliver improvements for everyone that lives, works, learns, visits and invests in West London.
An inclusive and successful West London is good for London, the whole country and if environmentally sustainable, the planet too.
Our team deliver initiatives in the West London sub-region, working across borough boundaries and focussing on the priority areas of Economy & Skills and Social Care & Housing. Details of each programme, their aims and key projects can be found here
The West London Alliance is committed to an enduring programme of collaboration and innovation to improve outcomes for the West London sub-region. We deliver initiatives through working across borough boundaries focussing on the priority areas of Economy & Skills and Social Care & Housing. To read more about our programme’s priorities and highlights, please see our Annual Report.
To read more about our programme’s priorities and highlights, please take a look at our Annual Report.
Contact Us or our Programme Leaders - West London Alliance
The Sickle Cell Children and Young Persons Peer Mentoring Programme
The Mentoring Scheme is for people living with sickle cell aged 10-24 . Sign up for FREE support and advice in our one-to-one mentoring sessions led by peer mentors , all of whom have sickle cell themselves.
As most of you will know, the Sickle Cell Peer Mentoring Programme has been successful in terms of its engagement with children young people and parents, clinicians, commissioners, including the demand and uptake not just from City and Hackney but from most boroughs across London.
We were also fortunate to have had the opportunity for the programme to be published in the British Journal of Haematology in Spring of 2019 outlining the outcomes of the model on children and young people. Our mentors were at the British Society of Haematology Conference in Glasgow in April 2019 to present their work.
Referrals are now open with some information about the eligibility criteria and perhaps a link to the referral sign-up link here: https://forms.office.com/e/5HwexD7cuv
For More information click here
Guides for Living with Sickle Cell
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
A‑Z of Sickle Cell Book – a child‑friendly ABC journey through sickle cell
Created by Lenneisha Ewers, inspired by her son Khari’s diagnosis with sickle cell disease at birth, A‑Z of Sickle Cell Book is a beautifully illustrated, alphabet-based guide designed for children aged around 5+. It introduces key facts about sickle cell disease—using the full A to Z format—to educate young readers and their families in an accessible, positive way .
Each letter in the book represents a concept or term related to the lived experience of sickle cell, making it both educational and memorable. Lenneisha shares her motivation: "it was difficult to find child‑friendly text… so that he can learn about his condition in a comprehensive way that a child can understand" .
The book is square-format, well-designed for young readers, and priced around £7.99–£9.99, depending on retailer. The site and social pages also feature heartfelt reviews:
“Who knew alphabets could be used in such remarkable ways…” — Natalia G.
“A book filled with insight in an easy to read way” — Denise F.
It’s a wonderful, engaging tool for parents, children, teachers, and anyone looking to raise awareness of sickle cell in a supportive, community-centered way.
Click here for more information
Living with Sickle Cell Disorder - a Guide for Patients
In June 2024, The Red Cell Network launched a comprehensive Guide to Living with Sickle Disorder, published to mark World Sickle Cell Awareness Day. This accessible resource is designed to be your go‑to companion for managing sickle cell disorder in the UK. It integrates practical advice—such as managing symptoms, accessing treatments, planning travel, and navigating welfare support—alongside links to trusted specialist resources for deeper info
Whether you're a patient, carer, or healthcare provider, this guide delivers essential support in one place.
Read here
Explore the full Living with Sickle Disorder guide
Support Groups
- Wandsworth Sickle Cell and Thalassaemia Support Group
- Croydon Sickle Cell & Thalassaemia Support Group
- Ealing, Hammersmith & Fulham Sickle Cell & Thalassaemia Support Group
- Sickle Plus – Additional support for sickle cell
- Children & Young People's Mental Health Services
- LBBD Sickle Cell & Thalassemia Centre
- Sickle Cell Cause
- Solace Support Group
- Cardiff Sickle Cell and Thalassaemia Centre
Mental Health
Mental health challenges are often a hidden aspect of living with sickle cell disease (SCD), affecting a large portion of the community. Studies show that people with SCD are significantly more likely to experience depression, anxiety, and chronic stress due to frequent hospital visits, pain episodes, and social stigma. It’s estimated that up to 29% of children and 36% of adults with SCD struggle with depression, with anxiety being a similarly common concern.
These issues not only impact individuals but also resonate through families and communities, influencing quality of life, relationships, and overall well-being. Recognizing symptoms of mental health distress—such as persistent sadness, loss of interest, difficulty sleeping, or feelings of isolation—is a crucial first step. If you or someone you know is struggling, there is help available. Resources, including therapy, support groups, and counseling services, can provide understanding and practical support. Reaching out is a sign of strength, and you’re not alone—help is here for every step of the journey.
Get urgent help for mental health
Find local mental health charities
You can visit Hub of Hope to search for mental health charities where you live. It's run by a national charity called Chasing the Stigma.
Mental health services for children and young people
Find out what help you can get if you're a child or young person who needs support with their mental health
For more information click here
About this page
- Last updated
- Author Eniola Kuseju
