I wrote to No.10 a couple of months ago and my letter was passed on to the Department of Health.
Their reply did little to answer my letter, but this is what it did: offered sympathy "I was sorry to read that your daughter has SMA" where none was requested; offered platitudes with regards to increasing awareness of rare conditions such as SMA amongst the public and health professional, suggesting that nothing more than Google is required; and aimed to pacify with stories of a UK-wide plan for rare diseases, aiming to "improve co-ordination and co-operation of services, achieve better outcomes, strengthen research and monitoring activities, engage and empower patients and their families and carers, and raise awareness in the public and in professionals.
I had suggested that there should be a screening programme for carriers of SMA and prenatal screening for pregnant women so that they could make informed decisions with the knowledge that they were carriers. To this the DofH replied, and this is themost interesting part of their reply:
"The UK National Screening Committee is currently reviewing the evidence for SMA screening against its criteria and a public consultation on the screening review will commence shortly"
This is good news... it is, I am sure... This is what Estella's parents have been aiming for with their SMASH SMA campaign. Pre-natal screening is of course an ethically charged and contentious issue but by opening it up to public consultation the UK NSC is looking for a consensus of opinion from those already living with SMA, whether they be a patient, a parent or a carer, and those who have the right to know if they too could be affected. By consulting the public, they are giving people to right to choose their futures. I look forward to hearing more and in the meantime hope to become more involved through my involvement with the Muscular Dystrophy Campaign.