Liverpool Sickle Cell and Thalassaemia Support Group
Is a UK registered charity group formed in October 2007, dedicated to providing support to children and adults affected by sickle cell and thalassemia disorder, helping parents and carers to manage and maintain quality of life.
We are passionate about the individuals and communities we work with, and our focus is to promote and grow public awareness about the impacts of SC & T conditions and the need for improving health and social care provision.
Our aim is to increase equality and diversity and influence health and social care policy that reflects the needs of SC patients.
This is achieved through our mullti- disciplinary partnerships across Merseyside with NHS specialists, public sector services, voluntary organisations and agencies to improve the lives through policy recommendations, education and health promotion activities including fundraising, education workshops, blood donor events.
We Hold Regular Meetings
Our friendly open door services include advice an information, counselling, and community outreach advice as a one stop shop and guidance information about sickle cell and thalassaemia disorders, providing the opportunity to share experiences in a safe and confidential environment.
“I made the mistake one day of asking someone with Sickle Cell what the pain was like. The answer I got still sends shivers down my spine – it feels like 10000 red hot razorblades cutting my flesh. It feels like the muscles are being torn apart and here is no let up”.
We voice the needs of our service users at local, regional, national and international level to increase awareness and to promote social inclusion with regional and local NHS multi-disciplinary specialist’s teams and partners from voluntary, private and public sector agencies to promote and generate multi-agency and cross sector working around key issues affecting SC patients to reduce the health divide in society impacting quality of care across all agencies.
Our work has prompted new initiatives to be put into place to modernise antenatal and child health screening services, to ensure that expectant parents can make informed choices about which tests to have.
Benefits of Becoming a Member
We believe we can all make a difference by building strong partnerships with those affected by Sickle Cell and Thalassaemia Disease, their families, Support Groups, Schools, organisations, and health care providers.
- Fundraise for children and youth activities
- Campaign and promote awareness in local community by getting involved in our creative and educational workshops.
- Volunteering to share and learn new skills.
- Engaging with Sickle Cell patients and multi-disciplinary health, social care and education teams.
- Raise Awareness
We are passionate to educate and assist you, but if you don’t ask us, there’s no way we can help you, so I encourage you to make use of this opportunity and allow us to serve you in this way.