Today was the day we joined Fiona Paddon and Scott Bramley, Edward’s parents, to deliver the 250,000 strong www.change.org/GBS petition to Jeremy Hunt MP (Secretary of State for Health), Prof Dame Sally Davies (Chief Medical Officer for England) and Dr Duncan Selbie (Chief Executive, Public Health England).
The petition delivery was supported on the day by MPs Matthew Pennycook (Fiona & Scott’s MP), Sir Nicholas Soames (our MP), Sir Peter Bottomley, Will Quince and Mims Davies with a number of apologies due to the timing from MPs travelling from further-flung parts of the UK.
There was a pre-meeting, hosted by Sir Nicholas Soames MP and Matthew Pennycook MP, and Fiona spoke incredibly movingly, describing how she had known nothing about group B Strep until after her son, Edward was born. He arrived, by emergency Caesarean section under general anaesthetic, following a 34-hour labour. Coming to from the general anaesthetic, Fiona was told that Edward had been born very sick with a group B Strep infection; he had been pale, floppy and unresponsive. He had been transferred to the Neonatal Intensive Care Unit (NICU) for cooling treatment, as he had brain damage from a lack of oxygen to his brain. Fiona and Scott waited anxiously for the results of an MRI scan of his brain, which sadly confirmed their worst fears – Edward’s brain had suffered so much damage that he could not breathe on his own. There was no chance of recovery. Fiona and Scott took the heart-breaking decision to turn off Edward’s ventilator. He passed away 12 hours later, at just nine days old. Edward is Fiona and Scott’s first and only child.
Sir Nicholas and Matthew both spoke eloquently of their and their colleagues support for reducing reducing the rate of EOGBS infections. There was quite some frustration that the rate of these infections is rising not falling in the UK, despite the introduction of prevention measures back in 2003, that we’re so behind other developed countries both on offering routine screening, and that the ECM test isn’t routinely available on the NHS. And, of course, that other countries have seen falls in their incidence. Sir Nicholas summed it up by saying that there was cross-party support for screening, the public are clearly onside as are so many midwives and obstetricians, and he wants the Government to take action to make this happen.
All agreed that pregnant women should be provided with good quality information about group B Strep, with the offer of ECM testing late in pregnancy. Until that happens, the view was clearly that expectant parents should be informed about GBS and provided with information about how to access ECM tests privately, plus given information about what signs & symptoms they should be alert for and what action to take in the early days and weeks after their baby is born. The suggestion was made that GBSS information materials could be used, both for new/expectant parents, and also for their health professionals, many of which are sorely under-informed. Many UK maternity units use our materials already.
Once the meeting closed, as a group we walked round to the Department of Health at Richmond House, Whitehall and a small group took the petition to be delivered to the addressees.
Now we wait for the response to the petition – as soon as we hear, we’ll let you know.
“This petition has over a quarter of a million signatures – they’ve got to take notice! So many babies dying from something that’s almost entirely preventable is unacceptable. I do hope the decision makers will listen, and much needed change will happen.”