This page contains information about the MFT Sickle Cell and Thalassaemia Services Partnership Board
People with Sickle Cell and Thalassaemia have typically faced avoidable challenges in accessing the care and support which they need as a result of a range of factors including limited understanding of the conditions they live with.
They can face very debilitating symptoms of their conditions, which can cause a great deal of pain and distress, stopping them from living their lives to the full.
While the NHS and the partners we work with have been working hard to try to improve this, we believe that more needs to be done to improve care for people and tackle this health inequality.
Following listening events led by our community partners highlighting the challenges faced by those living with these diseases and to help ensure a strategic approach to service developments and improve care for people with Sickle Cell and Thalassaemia, MFT created the Partnership Board in October 2022 to bring together key hospital and community services with third-sector and community representatives.
Introducing the Partnership Board
The members of the Partnership Board are clinicians and professionals, managers and members of our local communities and they represent:
Manchester University NHS Foundation Trust, including representatives from:
- Manchester Sickle Cell & Thalassaemia Service
- MFT Research and Innovation
- The Local Care Organisations
- Manchester Royal Infirmary
- Royal Manchester Children’s Hospital
- Saint Mary’s
- Haemoglobinopathy Coordinating Centre (HCC)
- Sickle Cell Care Manchester
- The Caribbean & African Health Network
- NHS England North West
We may add more members as the work of the Partnership Board progresses.
What the Partnership Board does
The aim of the Partnership Board is to ensure that we co-ordinate clinical, research and educational activity to build joined up service and care pathways and ensure that patients get the greatest benefits. We also want to ensure that we learn from the experiences of patients and their families, so that we get this right.
We recognise that improvements in clinical care, engagement and information must be owned by the services responsible for them and be responsive to the needs of those accessing our services, and role of the Partnership Board is to support them.
We also want to tell the stories of people with Sickle Cell and Thalassaemia, and of the developments to support them, to ensure a wider focus on this topic.
By taking this strategic approach, and having the voice of communities at the heart of this, we believe that we will have the best chance to get it right for people with these conditions.
What is the Partnership Board currently focusing on?
Among the topics which we are currently focusing on are:
- Mobilisation of the Hyper Acute Unit and the development of pathways to support those in crisis
- Design and development of an MFT Sickle Cell, Thalassemia and rare anaemia service strategy that is informed by community engagement undertaken by key partners that work with communities, patients
- Ensuring we develop one approach to sharing of communications, advice and guidance and wider support with patients, families and the wider community including how we support the education of our medical and clinical workforce across MFT about how to support those with Sickle Cell and Thalassemia
Taking part in research
At MFT we have a number of research projects taking place to better understand and improve treatments for sickle cell and thalassaemia. We want to give people in Greater Manchester and beyond the opportunity to be part of our research. Find out more about sickle cell disease and thalassaemia clinical research trials on the MFT Haemoglobinopathy Coordinating Centre website.
Our stories and news
A range of stories about people with Sickle Cell and Thalassaemia can be read below, along with selected news items:
A Manchester women whose Sickle Cell condition was so painful she once thought it might end her life – has told of a new revolutionary NHS treatment which has left her ‘feeling as if she has wings’. Read Sanah’s story here.