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To: Jeremy Hunt MP
Save Children Through Screening UK
Dear Mr Hunt
We would like the number of diseases screened for during the heel prick test to be raised to bring the UK in line with other countries. I am alarmed to find that only 9 (increased on the 5th January 2015 - previously 5) disorders are currently screened for during the new born screening tests in the UK.
The USA legally screen for 31 disorders in all states during new born screening tests (up to 60 in some states), Australia and New Zealand for 28, European countries screen for up to 29, the UK is seriously lagging behind in this field.
I would like the government to make a proactive change in new born screening in the NHS so more disorders are screened for in the UK and less families have to go through this heart breaking, powerless ordeal of watching their child suffer or die. Especially when some of these disorders can be easily tackled with medicine or diet changes if caught early enough.
We would specifically like Krabbes disease added to the heel prick screening test.
Why is this important?
The UK screen for a third of the diseases other progressive countries screen for during the heel prick test offered to all UK babies.
Increasing the amount of diseases screened for is very important for treating or curing diseases before symptoms appear.
The issue was brought to my attention through a family having a child born with Krabbe's disease.
Krabbe's disease can effect anyone. The disease is not recognised immediately and can often be mistaken for colic by parents and doctors, once diagnosed (typically between 2 and 6 months in infants) there is nothing that can be done medically to save the infant. The body's nerves degenerate until the child loses the ability to hear, to see, to feel, to swallow and then to breath. Typically an infant with Krabbe's disease will die before the age of two.
This, along with many other diseases, is currently screened for in the USA, but not in the UK.
So many diseases / disorders can be treated, or even cured, if recognised before the symptoms appear. From asthma to Krabbes - these could all be screened for during the heel prick test.
Why is the UK only recently screening for 9 areas during the heel prick test? As a progressive country we are so far behind.
We are not asking for miracle cures or favouritism, just the same chances for our children as others in progressive countries get.
How it will be delivered
We plan to hand the petition over in person