Prior to this occasion Broken Silence had met with Lord Trevor Smith and the APPG on separate occasions to liaise about significant changes that need to be made to create quality of life for Sickle Cell sufferers.
The group are calling for action on Transcranial Doppler Scanning guidance for children with sickle cell disease. Broken Silence wish to highlight that stroke can in fact be partly preventable if patients are screened through Transcrannial Doppler (TCD) Scanning. The Stroke Prevention Trial or 'STOP' study showed that by giving children with abnormal TCD scans regular blood transfusions, their risk of stroke was reduced by 90%.
The Transcronial Doppler Scanning for Children with Sickle Cell Disease Standards and Guidance, published in March 2009 went some way in addressing the issue, Diane Abbott MP, Chair of the All Party Parliamentary Group on Sickle Cell and Thalassaemia said of the guidelines, ‘Good quality TCD scanning has the potential to have a major impact on effectively identifying those children most at risk of stroke. With early intervention and preventative action it will be possible to significantly reduce the incidence of strokes among this at-risk group and, ultimately save lives.’
Lord Smith of Clifton, who was himself a trustee of the Stroke Association, first met with Broken Silence in 2008 and champions the work they have done to date on highlighting the need for TCD scanning:
'Having experienced a stroke myself, I know the effect it can have on your everyday life. It's distressing to think of young people with sickle cell disease having a stoke, particularly if the risk can be reduced by receiving the right treatment. I was pleased to raise the issue of access to TCD scans in parliament last year, and hope that these new standards will be implemented as quickly as possible.'
This afternoon at the parliament was a day of networking, mingling, sharing stories and ideas and coming together for a common cause.
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