Sunday, 5 March 2017

5 Live Investigates

Today has been a fabulous day of awareness raising on the increasing number of Group B Strep infections in the UK and the devastation these can cause.  A number of parents, including me, have shared our stories with BBC Radio 5 Live today.

To set the scene, in January I joined Fiona and Scott Paddon, the charity Group B Strep Support and a large group of supporters and MP's in delivering a petition to the Department for Health asking for GBS screening to be introduced to standard NHS prenatal care.  Fiona Paddon, as the instigator of the petition, movingly shared her story of the death of her son, Edward, at just nine days old - as a result of a preventable GBS infection.  At that point, the petition contained 256,000 signatures (and is now almost 300,000).  That bears saying again:  Over a quarter of a million people in the UK want GBS testing on the NHS.  

I, along with the charity were therefore incredibly disappointed to receive a largely standard response from Phillip Dunne MP, Minister for Health which repeated many previously used phrases and included:  "I note the petition about GBS and fully appreciate the concerns raised by signatories." He then continues, "We have a national ambition to halve the rate of stillbirths, neonatal deaths, brain injuries that occur during or soon after birth and maternal deaths by 2030.  This includes harm and death caused by GBS."  

So far, so good - right?  Not quite.  The Minister continues to say:

"The 2012 recommendation not to screen women at 35-37 weeks of pregnancy for GBS was due to insufficient evidence to demonstrate that the benefits of screening would outweigh the harms."  

"You may be aware that Public Health England (PHE) advised and published a position paper which sets out that within current accepted clinical guidelines, there are no indications for testing women using ECM methods."

"Thank you again for taking the time to write to us about this important issue and I hope the current activity in this area demonstrates that the Government is doing all it can to prevent stillbirths and devastating neonatal infections such as GBS."

(You can find the entire letter on the GBSS website here:  http://gbss.org.uk/wp-content/uploads/2017/03/2017_02_24-Philip-Dunne-to-Jane-Plumb-re-GBS-Petition.pdf)

The charity responded by saying, "We are so disappointed by this letter - it may be that the minister does 'fully appreciate the concerns raised by the signatories' but, if that is so, he has failed to show it in his letter."

You can also find the charity's complete response to the letter here:  http://gbss.org.uk/latest-news/minister-health-responds-256k-signature-gbs-petition/

But of course, despite our anger and disappointment, we are not going to walk quietly away from this fight and all supporters of GBS are encouraged to write to their MP's expressing their concerns about the current position.

We were therefore very pleased when "BBC 5 Live Investigates" decided to devote a majority of their program today to the issue of Group B Strep.  They interviewed Charlotte Heath, whose daughter Aimee is five years old and has been left with Quadraplegic Spastic Cerebral Palsy and Pseudobulbar Palsy which means that she cannot sit up unaided, she cannot stand, she cannot walk, she cannot talk.  Aimee is still tube-fed and only just learning to feed herself; she will need a lifetime of care.  5Live also interviewed me on the Breakfast Program as I shared Adam's story with them and, as you will know, Adam is hearing impaired, visually impaired, asthmatic, autistic and globally developmentally delayed.  

Both of these infections, and their resulting lifelong disabilities for our children could have been prevented with prenatal GBS testing, using the ECM Gold Standard test and simple antibiotics for both Charlotte and I during labour.  This is the same test that the Minister for Health says, "there are no indications for testing women using ECM methods."  

Well Minister, that just isn't good enough.  Group B Strep is the single largest cause of serious illness in newborn babies in the UK and two babies a month, every month, contract the infection.  Some will survive without complication, but many will die and many more will be left with serious disabilities.  It is time, and past time, to join the dozens of other countries around the world who DO test for GBS because then and only then will I believe that, "the government is doing all it can to prevent stillbirths and devastating neonatal infections such as GBS."

You can hear my interview with Sunday Breakfast on BBC Radio 5 Live here at 2hrs 40mins: http://www.bbc.co.uk/programmes/b08gwcmr

video


You can also hear the entire "5 Live Investigates" Program with Charlotte Heath, Jane Plumb and other parents contributions here:  http://www.bbc.co.uk/programmes/b08gwcnf

You can also see articles on the BBC News website here:  http://www.bbc.co.uk/news/health-39158603

And also on the BT News website here:  http://home.bt.com/news/uk-news/one-baby-dies-every-two-weeks-because-of-a-preventable-infection-probe-finds-11364161622029

One baby dies every two weeks in the UK of GBS infection and this can be prevented.  When will the Government wake up and act to stop this devastation?

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