Tom Brake calls for better treatment for sickle cell sufferers

June 9, 2011 5:21 PM

Local MP Tom Brake recently attended a Parliamentary reception to raise awareness of the link between sickle cell disease and stroke in children and to meet with a young constituent who had suffered from stroke along with her family.

The event, which was organised by charities Sickle Cell and Young Survivors and the Sickle Cell Society, also emphasised the need for a continued focus on developing stroke services for young sickle patients.

Tom said: "We need to make sure that people are made aware of the link between sickle cell disease and stroke. I hope that this event has gone some way towards doing that."

Sickle cell disease currently affects an estimated 12,500 people across the country and is one of Britain's most common genetic disorders. Research has shown that around 11% of children with sickle cell disease will suffer a stroke before they reach adulthood, making them three hundred times more likely to suffer than normal children.

The implementation of Transcranial Doppler Scanning (TCD) has been developed to identify children at a higher risk of a stroke, and regular blood transfusions to remove excess iron from the blood for those at a high risk have been shown to reduce the risk of stroke by up to 90%.

Since 2009 the NHS has slowly increased the provision of the procedure, but unfortunately the availability and standard of the service varies widely across the country.

Tom continued: "The event was a valuable opportunity to raise awareness of a condition which affects many children across the country. I have written to the Undersecretary of State for Public Health Anne Milton to see what measures are being taken to improve stroke services for children and what steps the Department of Health is taking to ensure suitable training is put in place for clinical staff in the theory, protocols and equipment used in Transcranial Doppler Scanning. I want to ensure that those affected do not go without the treatment they need."

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