Sickle Cell Disease – What do we do?

Hollie McKenna, Business Support Manager for Therapeutic Apheresis Services (TAS) attended the Sickle Cell Society’s Annual General Meeting in July this year.

Sickle Cell Disease (SCD) is an inherited blood disorder affecting around 15,000 people in England, where red blood cells adopt a shape which can lead to blood vessel blockages. Vessel blockages can lead to sickle cell crises and pain which speakers at the meeting compared to child birth.

Around 200 people attended the Annual General Meeting including adults and children with SCD, members of the B Positive choir, clinicians, scientists and NHS England representatives. The meeting is designed to discuss the key achievements that the Sickle Cell Society has made and its future plans to support people living with the disease.

I attended alongside Lydia Ball, Service Development Manager within TAS and Torkwase Holmes, Team Manager from the British Bone Marrow Registry (BBMR). Lydia, Torwkase and I were keen to show our support for the Sickle Cell Society through discussing with attendees the role that NHSBT plays to support not only blood donation but also automated red cell exchange treatment and stem cell donation.

Apheresis is a process which uses technology to exchange, remove or collect certain blood components. An example of an apheresis treatment offered by TAS is automated red cell exchange for patients with SCD. To treat SCD, patient’s red cells can be replaced by donor red cells through apheresis, which in turn reduces the proportion of sickle cell haemoglobin. In England, many patients still receive manual transfusions which take longer than apheresis and are required on a more regular basis.

Notably, it was stated at the meeting that “excellence in the delivery of healthcare does exist and the efforts should be to ensure the consistency of this.”

TAS’ strategic objective is to ensure that patients across England have access to specialised treatment regardless of their geographical location.

In addition to her role in BBTS, Torwkase Holmes is a Donor Ambassador for NHSBT and gave up her time to support this event and to recruit more blood donors from Black, Asian and Minority Ethnic (BAME) communities. Stem cell transplant if successful can be curative for SCD, however it is limited by a lack of suitable, matched donors. Promoting the requirement for a wide and diverse donor panel is therefore very important.

The Society is a charity which aims to assist and enable people with SCD to realise their full potential by supporting education and medical research, while working to influence authorities to improve access to optimal treatments. It was fantastic hearing from children with SCD who are supported by inspirational mentors from the Society. The mentors support the children with the realities of living with the condition based on personal experiences and clearly make a massive difference to the children’s wellbeing.

The day really reiterated to me the importance of blood and stem cell donors and highlighted the massive difference you can make to people suffering. If you haven’t already, you can sign up to become a blood donor.

NHS England presented their proposals to improve service delivery based on a Service Review of the management of Haemoglobinopathy disorders, such as SCD. For more information and to provide your views on the NHS England proposals, please click here.

Photo above: John James OBE (Chief Executive of the Sickle Cell Society) with Lydia Ball (Service Development Manager, TAS)

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