Saturday, 12 August 2017

Autism and Haircuts = Nightmare

Anyone who has ever had contact with a child with autism will know that haircuts are an absolute nightmare.  And I'm talking a screaming, thrashing, violent nightmare.  Every time I have ever entered a salon and asked a professional stylist to cut Adam's hair has ended with profuse apologies and the stylist's needing a stiff drink after the experience.  I stopped taking Adam to salons at least two years ago.  It just isn't worth it.

We started cutting Adam's hair at home with clippers - absolutely no skill but just a simple buzz cut to keep his hair short.  That was a bit better for a while as he at least didn't have to cope with a strange place, unfamiliar sights, smells and sounds and at least could be in his own "safe space" at home with us.

It slowly got worse though - was it the buzzing feeling of the clippers?  The feeling of the hair dropping onto his neck, shoulders and face?  The fact of being made to sit in one place and not run away when he didn't like the experience?  Probably all of the above.  The problem with clippers is that once you start, you kind of have to finish - whether he likes it or not as stripes just aren't a good look.

But after the last experience that ended up with all three of us - Adam, Chris and I - in floods of tears, I knew it was time for yet another change.  I have avoided cutting his hair for around four months now as I just couldn't face it.  This week though, as I tried to put his hearing aids in and realised I was actually sweeping away the hair from around his ears, I knew I couldn't avoid it forever.

I thought it might be easier to cut his hair manually, with scissors, as at least he wouldn't have the buzzing to cope with from the clippers and I could (in principle at least) trim the back one day, the sides another and move on slowly.  It really didn't matter if the hair was neat or styled, just so long as it was shorter and didn't look too much like a hedge.  So I ordered some proper haircutting scissors from Amazon and watched a few tutorial videos on YouTube to get the basic idea on how to cut a boys hair (the child models used sat impossibly still and patient, this made me laugh!)

I then tried to think of everything that could possibly help and came up with the following:

- two diffusers in the room with doTERRA Serenity and Balance oils in them for calm in the atmosphere.
- a spray bottle with more Serenity and Balance so that with every spray, Adam was having calming oils soaking into his skin.
- sole possession of the remote control

Timmy Time, YouTube, Night Garden, his choice entirely - whatever worked to distract himself 

- Sitting strapped into his wheelchair

The straps help me as I only have to contend with his moving head and flailing arms but it also helps him because his wheelchair contains and soothes him, it's a 'safe place' for him.

- Finally, dressing Adam in his wetsuit.  

Yes, you read that right - his wetsuit - and if I do say so myself it was my most brilliant idea.  You see, the wetsuit is tight and has a collar that comes halfway up Adam's neck so there's no possibility of getting stray hairs under his clothes where they can tickle his skin, causing annoying and distressing itching.  In addition, the tightness of the suit gives Adam a form of deep pressure for sensory calming during a difficult experience.  It was one of my stranger but ultimately more brilliant ideas.

Yesterday afternoon, I trimmed the length at the back of Adam's neck...then left him alone.  Yesterday evening, I trimmed round his ears...and again left him alone.  This morning, I decided I go in for the rest, so diffusers, wetsuit. wheelchair, tv and I was off.

There were difficult moments, and as per usual, I have some injuries (I wouldn't expect anything less) but overall, it worked.  Adam's hair is trimmed, it's mostly neat (I'm not a trained expert so there's a few visible lines but I can live with that and it will grow out) but most importantly, we both survived.  At one point, he had even managed to become absorbed enough into his TV show that he was actually giggling!  We won't mention the points when he was bruising me, the giggling was a huge step.  Even Chris looked at me in shock and deepest respect when he heard that - we've never, ever had laughter during haircuts before.

Will it last forever?  Who knows.  If he lets me, I'll certainly try again but I can honestly say it was the best haircut we've had in years and there were no tears.  I call that a success.

Saturday, 1 July 2017

Dear Woman in the Park....

You will probably never read this and very likely have no idea how much danger you put my son in today through a simple act of thoughtlessness.  You could have cost him his life.  You could have changed ours forever.

Today was a sunny Saturday morning, after an hour at soft play, we arrived in Newport early for a chiropractors appointment so we decided to stop off in a children's play area in Water Lane.  My son spent some time on the seesaw, then he tried for the very first time to climb the monkey bars - he was wobbly and we were standing either side of him and watching very carefully for any missed handhold or footrest as we know his balance isn't great - but we wanted to encourage him to try.  He played with some of the spinning toys for a bit, went back to the seesaw and was generally having fun. From time to time, another parent and child came into the park and Adam generally ignored them.

Then you came into the park, I didn't notice if you had a child with you but I remember you were dressed in a pink jacket or top. Adam loves pink and, in his usual innocent way, he rushed over to you more than likely intending to point to your jacket and say, "pink!"  Instead, as you saw him approaching, you opened the gate and held it open for him to rush through and take off into the rest of the park.  

What in that moment were you thinking?! A small child is approaching me, I don't know him or his carers, but it must be ok not just to let him run out of the play area but to actively invite him to do so by holding open the gate.

What were you thinking as you saw this child legging it off into the park with two parents running after him, desperately shouting his name? What were you thinking when, without any apology or effort to check if things were ok, you just walked away?

I can tell you what I was thinking - will my hearing impaired child know that I am calling his name?  Will my autistic child know that mummy and daddy running after him, calling his name, means he should stop?  Will my visually impaired child be able to see the moving cars in the car park or on the road?  Will this moment be the one that defines the rest of our lives because we cannot catch him and he is approaching the road.  

Did you even notice that we kept running and calling his name but that the small boy didn't respond, didn't slow down, didn't stop? Did it even occur to you that something was wrong or that your actions were the reason for it?  Probably not because I would like to think you might have stopped, offered to help or even apologised if you had.

Maybe you might have seen two panicked parents chasing their son through the park, into the car park and grabbing him just inches before he ran into the road in front of an approaching car.

Maybe you might have noticed that the anger the little boys dad showed in speaking and signing, "stop!" and "naughty!" to his son actually covered a desperate fear.  Maybe you might have seen the boy start to sob as he finally realised something was wrong.

Maybe you might have seen the little boys mother falling to her knees and clinging to her son as they both cried.

Maybe you might have seen both parents shaking - visibly, all over - as they strapped their desperately vulnerable, disabled son into his special needs car seat because there, they knew he would be safe.

Maybe you might have seen them sitting in the front seat of their motability car with their heads in their hands, not speaking for a long moment before they were capable of driving safely.

Maybe you might have seen them entering the chiropractors with their son double strapped to his safety harness while his mother also clung to his hand.  Maybe that might have struck you as unusual.

Maybe you might have seen the receptionist noticing that both parents faces were dead white and that she offered them strong, sweet tea, realising something was very wrong, even if she didn't know what.

Maybe then you might have realised that holding open a gate, not just to allow, but to silently invite a child to leave a playpark was not only thoughtless but could have cost that child his life because you have no idea what sort of life he leads.

Thank goodness we caught him, thank goodness our son didn't run under the moving car and thank goodness he's currently napping beside me but it might not have been this way.  Today could so easily have turned out very differently indeed.

Dear Woman in the Park, I'd like to think you made a mistake, I doubt your actions were malicious but they were both thoughtless and dangerous.  So the next time a child approaches you in a playpark, before you open a gate to invite him through it....STOP and THINK about what the consequences might be. Look up, visually find the parents to check if it's ok, try to speak to the child or if you can't do any of these things, err on the side of caution and don't open the gate - please.

Wednesday, 17 May 2017

And Now...A Seizure

On Sunday night, we put Adam to bed as normal - the picture of health.  Admittedly he was in my bed as "Mummy's Wooom" is the current favourite place, but he was fine.  Normally we have a video baby monitor trained on him but only when he's in his own bed.  An hour later, I walked upstairs to find him lying in a pool of vomit in my bed, completely silent and looking dazed.  Calling Chris, I swung into action.

I thought Adam had simply been so deeply asleep that it was taking him a few moments to wake up so I encouraged him to stumble to the shower but as I was washing him, I noticed that he wasn't making a sound - not a cry, not a murmur of distress, nothing other than "staring into the middle distance" silently.  I thought it was odd, but still assumed he was struggling to wake up.  Adam stumbled on being encouraged out of the shower and his little knees partially buckled before, with encouragement, he straightened and I wrapped him in his towel and walked him across to his room.

Lying him down on the change mat, he still wasn't making a sound and on looking at his face, I noticed his eyes were fixed on the ceiling, looking glazed and far away.  I started to become really worried and even more so when he began to be sick again, but still not making a sound or even focusing his eyes.  I rolled him onto his side into a close approximation of the Recovery Position and asked Chris if we should ring an ambulance.  

Then Adam started to make a couple of odd grunting sounds so I tried to talk to him, soothe him.  Then he simply curled up and fell asleep on the change mat.  We really didn't know what to do and whether it was an emergency or just a sleepy child with a tummy bug.  While we debated, Adam was sick once more and then "came back into the room" - his eyes focused and he began to cry.  Our relief was palpable as it was a normal reaction for the circumstances.

We sat on the floor with him, cleaned him up and soothed him and then, just like that, Adam stood up, climbed into his own bed wearing just his nappy and fell asleep.  We were completely non-plussed and just didn't know what to do - we didn't think we could call an ambulance to say our son had vomited and then fallen asleep, but it also didn't seem 'right'.  I sat there in his bed for over an hour, with my hand on his back but he was breathing normally and seemingly fast asleep so eventually we went to bed.

Adam slept for five hours and woke up just after 5am, seemingly absolutely fine.  We kept him off school because of the vomiting but there was no repeat and he had a normal appetite.  I was confused but again, didn't think I could really ring the GP to say, "Our son was sick last night, but he's fine now - what would you suggest?"  So I asked a friend, our former health visitor and long-serving hospital nurse, what she thought.  

I was absolutely stunned when she suggested it might have been a seizure.  Stunned.  Horrified.  Kicking myself for not just reacting and ringing an ambulance and suddenly terrified. 

When Adam was in neonatal intensive care as a baby, he had hundreds of seizures - it was a symptom of his Group b Strep Meningitis.  We were always warned that he could have seizures in the future but having never seen anything like one, I have long since stopped worrying about it - let's face it, we have enough other worries to deal with!  

But, as Wendy accurately and kindly pointed out, we deal with extreme situations every single day and we have an awful lot more to cope with than many other parents.  That means that we normalise what is not normal because it's our daily reality and it's a way of coping as the primary carers of a profoundly disabled little boy.  The good side of this is that it keeps us functioning, but the downside is that we sometimes lose sight of when we actually need additional medical advice or care.  

I think that's what happened on Sunday night - instead of panicking as many would, we kicked into coping mode; we second-guessed ourselves and analysed whether or not we really needed medical advice or whether this was just another facet of caring for our complicated little boy.  We made the wrong decision.  We should have called an ambulance.  We didn't.  Thankfully, when it was over, Adam was asleep and he was fine - but that's not the point.

On our friend's advice, I rang our GP and described in detail what had happened.  He agreed that it was a seizure and talked me through the next steps.  The doctor said we could start preventative medication just in case it was epilepsy but for one seizure, that wasn't appropriate.  

We could choose to request tests attempting to confirm whether it is epilepsy or *just* a seizure - something that can apparently occur in children when they're too hot or ill.  The problem is that testing would require Adam to wear electrodes on his head and then sleep through the night.  For an autistic child who cannot communicate effectively, cannot understand directions or explanations, this simply will not happen, and the GP understands that as he has an autistic son of his own.  

We could therefore consider sedation to perform the test but this comes with a whole extra set of risks because Adam is at risk of Malignant Hyperthermia so anaesthetic carries fatal risk - these days, measures can be taken that are exceedingly likely to prevent this reaction, but no medical procedure is ever without risk.  So if we want to proceed, we would have to decide whether or not it's a risk we're willing to take - would the possibility of seeing seizure activity in his brain be worth the risk of an MH reaction?  

The doctor decided that, at this stage, it probably wouldn't be worth either the difficulties or the risks of testing - not for one seizure.  He also said that with Adam's history of neonatal brain injury, seizures are understandable even a long time after the original illness. He left me saying that our only realistic option is to watch and to wait - if it takes another five years for a seizure to occur, then in medical terms, Adam is doing well and if another one recurs sooner, then we ring the doctor and he takes it from there.

I thanked him, exchanged pleasantries, put down the phone

...and fell apart.  

As a result of preventable Group b Strep Meningitis, our son is already Hearing Impaired, Visually Impaired, Autistic, Developmentally Delayed, Asthmatic and now possibly either epileptic or just having seizures from time to time.  There simply are no words to convey how we feel right now, only realistically, tears.

Lord, have mercy.

Wednesday, 10 May 2017

SEND Tribunal

So, tomorrow we go to tribunal, Special Educational Needs Disputes Tribunal to be more specific.  What began three years ago with a dispute with the Local Authority over how to transport Adam to school (in a carseat or not) has long since morphed into fighting over his EHCP (Education Health & Care Plan), what will be in it and how the contents of this will impact on his educational provision.  

It has been a long battle to get to this point and, regardless of the outcome tomorrow, both Chris and I are immensely grateful to the team at SEN Legal, who specialise in fighting for the rights of children with additional needs.  It is also an incredibly stressful process so we would be grateful for your thoughts and prayers to go with us.

Those of you who listen to Free Radio (Wolverhampton and Birmingham stations) will now also know that we have taken the incredibly difficult and painful decision to also pursue legal action over the circumstances of Adam's birth and how quickly he received the intensive care that he ultimately needed.  

This decision was taken two years ago but cases like these take a very long time to investigate and typically many years to come to a conclusion.  But with the recent national news that Shrewsbury and Telford Hospitals are the subject of a government ordered investigation into their maternity care for preventable deaths and birth injury, we agreed to our solicitor's request to allow our decision to be made public.  If you wish to read the press release on this, you can do so here:  Irwin Mitchell Solicitors

Our motivation always has been, and remains, doing everything we possibly can to meet Adam's lifelong needs and providing the care, therapy and education he will need in the years to come.  

Your thoughts and prayers for us all on this very difficult road would be very much appreciated.  Thank you


Monday, 24 April 2017

"Testing Mothers for Deadly Infection Supported"

This morning, there is a large "Focus on Health" section in the Shropshire Star which includes two articles on GBS.  Sadly, in one of these we read the story of two babies who lost their lives to GBS infections, and in the other of a child who has been left disabled - this in addition to my own story with Adam.

As always, I am very grateful to the Shropshire Star for raising awareness of this deadly infection and focusing on these stories - we wish we didn't have to tell them but will continue doing so until GBS screening is introduced on the NHS!

Just a note:  one article included a small misprint saying, "The National Screening Committee regularly gives the reason not to introduce routine screening as it is worried about the risk of adverse reaction, as it can lead to infertility."  This is incorrect: the adverse reactions the Screening Committee have mentioned are risk of allergic reaction to the penicillin used to treat GBS positive mothers and the risk of increased antibiotic resistance.  GBS screening does not cause or risk infertility.

Shropshire Star, 24th April 2017, Pg6
Shropshire Star, 24th April, Pg7


Friday, 21 April 2017

UK Screening Programme for GBS Reduces Life-Threatening Infections By Over 80%

This week saw the release of information from a 22-month ground-breaking study by Northwick Hospital in London proving that GBS screening reduced the rate of life-threatening infections by 83%.

This is of course excellent news for all families affected by the tragedy of Group B Strep, but it also comes as no surprise because this is precisely what charity, Group B Strep Support and their excellent medical panel have been saying for years.  International research from countries that do test pregnant women for Group B Strep confirms that, when ECM Gold Standard swab testing is offered to women, then infection rates drop by over 70% and in some cases by as much as 90%.

The National Screening Committee has repeatedly refused to introduce GBS testing here in the UK for a number of reasons - they have cited a lack of UK based evidence (while also refusing to fund UK based studies) and they have also expressed concern over risk of increased complications if women were to have allergic reactions to penicillin (used to prevent Group B Strep passing from mother to baby) along with fears that it could increase antibiotic resistance.

Northwick Park Hospital had been following current UK guidelines for detecting Group B Strep, commonly referred to as The Risk Based Approach; but despite this, their infection rate was three times the national average.  So Dr Gopal Rao, Consultant Microbiologist at NPH decided to set up a trial GBS screening programme to find out whether or not this would help reduce the infection rate at the hospital.

Over the 22 month trial, 6,000 women voluntarily chose to accept Group B Strep testing using the ECM Gold Standard swab test.  During this time, only three babies born at the hospital contracted Group B Strep Infections and of those, only one of the mothers had accepted screening.  This study resulted in an overall fall of 63% in Group B Strep infections (taking into account those who refused the test) and 83% in women who accepted the test.  Crucially, there were no adverse reactions to either screening or treatment - no increased antibiotic resistance and no allergic reactions.  

In a deep irony, the results of the study have been published in the BMJ Open Medical Journal just days after the UK Screening Committee once again refused to introduce nationwide GBS testing insisting that there is "insufficient evidence" to support it.  

Here in Shropshire, Jeremy Hunt has recently announced an investigation into the preventable deaths of seven babies at Shrewsbury and Telford Hospitals and two of those preventable deaths were as a result of Group B Strep infections that were neither detected nor treated properly.  This investigation announcement also comes just under two months after Phillip Dunne MP, on behalf of Jeremy Hunt, responded to the petition seeking nationwide GBS screening that we presented to the Department of Health in January with over 250,000 signatures.  In his letter, the Minister rejected our request and insisted that the government were already doing all they could to prevent these devastating infections.

And yet, on average, in the UK:

2 babies every day develop Group B Strep infection
1 baby every week dies from Group B Strep infection
1 baby every week survives with disabilities as a result of Group B Strep infection

When will the Screening Committee, the Government, and the NHS wake up and smell the coffee?  It doesn't need to be this way.  These deadly infections can and should be prevented.  This study from Northwick Park Hospital proves it.

You can read more about this on the website of charity, Group B Strep Support here:  Northwick Park Hospital GBS Study or here:  LNWH NHS Trust

Thursday, 6 April 2017

How Many More Babies Must Die?

Today, Shropshire Coroner John Ellery, concluded that the death of baby Pippa Griffiths at just one day old was preventable.  Baby Pippa tragically died of a Group B Strep infection and so the headline in today's Shropshire Star, "How Many More Babies Must Die?" is wholly apt.

The Coroner has decided to pass his findings to the National Screening Committee and, as campaigners, we will continue to fight for prenatal GBS information and testing to be given to all pregnant women.

As campaigners, and more importantly, as parents personally and tragically affected by this terrible and preventable infection, we know all too well the pain the Griffiths family are feeling.  Our thoughts and prayers are with them.


Shropshire Star, 6th April 2017








Saturday, 25 March 2017

Dear Beautiful Boy... (Age 6)

Today you turned Big Boy Six and what a special birthday it was - and how very different from all of the other birthdays that have gone before!

Of course you got up at 5:05am, as I should have expected, you were excited to start your day.  Perhaps Mummy and Daddy weren't *quite* so keen to get up at that time of day on a Saturday, but ever your devoted servants and all that...  But we kept you upstairs until we were all ready, Mummy had been well supplied with coffee and we'd even been able to poke some life into your teenage brother (sorry George, I know 7am on a weekend hurts!)  

But finally, I drew you over to me, did my best to make eye contact (always a difficult thing for you but that's ok) and I started to sing and sign, "Happy Birthday to you, happy birthday to you..."  You cocked your head a few times, trying to listen and work out the unfamiliar words and then a light dawned in your eyes as you said excitedly, "Presents?  Adam, presents?"  Nice to know you've got your priorities right, just as any birthday boy would!

Well, after that, there was no holding you back as you played your "searching" game with Daddy and combed the house for presents.  Finally, Daddy let you open the lounge door to find at least thirty balloons (Daddy and I were a bit light-headed after blowing all those up last night!) and precisely Six Presents - just the way you like it.

It was such a joy to watch you fall on those presents and rip them open with squeals of excitement.  I couldn't help thinking of just how far we've come from the days when presents were scary and something to be avoided.  Once you'd had a play with your new Thomas the Tank Engine set, composed a symphony on your keyboard and firmly discarded the clothes and books (boring), it was time to get into the car.

As always, we left at just the right time to fit with your Saturday morning routine, but this time your weekly trip to Little Rascals Soft Play included a party with four other children - nearly half of your class from school managed to come.  At first, you were very worried and uncertain to see your classmates out of context so you did what all birthday boys should and ignored them for a while...but then J arrived.  Oh how you love J!  He's your very best friend in all the world and your face just *lit up* when he arrived.  From that point onwards, you two were the central sun around which all of the other children orbited as you flew down the slides, played football (in your own unique way) and clambered across anyone else who got in your way.  It was the first time ever that your Daddy and I could just sit and watch you play, completely surplus to requirement and delighted to be so.

Eventually, remembering that it was your birthday, you and J helped yourselves to the presents from the other little girls' birthday party and couldn't *quite* understand why they weren't your presents but we wrestled them out of your clutching fists and returned them, slightly red-faced to the shocked parents in the other party who hadn't been *quite* prepared for two six-year-old autistic boys to crash their party...and steal their presents. Ah well, welcome to our world!

But finally, having run yourselves absolutely ragged - and with the tomato red face to prove it, both of you were tired out so came the challenge of separating you from your gang at which point the respective meltdowns began.  Thankfully though, all sets of parents are well versed in the a) Negotiate and Cajole b) Try Again c) Finally, Scoop the screeching, thrashing small person up into parental arms and run....  

Finally wrestling you into your carseat and offering all the usual rewards to help you calm down, we were off home for a long, long afternoon nap to rest and recover.  Maybe tomorrow we might give you time to listen to all of your special messages on the answering machine - one of your very favourite things - "You have six new messages.  Message one...."  It always brings a smile to your face whether it's the first or 41st time you've pressed the button.

Beautiful Boy, I hope you enjoyed your sixth birthday, I know I did - and that is definitely an achievement.  Thankfully, despite all of the challenges that still face us, those days in intensive care finally seem a long way behind us and so our experience of your birthday just doesn't take us to the same place it used to.  Now, we can just celebrate the unique and beautiful gift that is you.  I love you baby boy, you might be a very big, strong six year old...but you'll always be my baby.  Happy birthday sweetheart...  

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?

Sunday, 29 January 2017

Mother Backs Plea for Screening

Following our visit to London last Monday to deliver a petition to the Department of Health asking for GBS Screening to be offered to all pregnant women in the UK, our local papers The Shropshire Star and the Telford Journal ran the following story:


Monday, 23 January 2017

Joining Bereaved Parents in Delivering 250,000-Strong Petition

Today, I joined Fiona and Scott Paddon and many other supporters of Group B Strep Support in London.  We were delivering a petition, started by Fiona, to the Department of Health asking them to introduce GBS Testing for all pregnant women in the UK.  The petition has over 250,000 signatures on it and represents the voices of many thousands of people who believe it is time, and past time, to address this issue.  

Fiona spoke movingly of the tragic death of her son, Edward, at just nine days old as a result of a preventable GBS infection.  This is of course an issue so close to my heart as my own son, Adam, is profoundly disabled as a result of his battle with Group B Strep Meningitis - which could also have been simply, safely and affordably prevented.

It was an honour to be joined by Sir Nicholas Soames MP, Matthew Pennycook MP, Will Quince MP, and Sir Peter Bottomley MP, all of whom have lent their support to this issue. It's not too late to sign - please add your signature to the petition where you can find details below.





The event was also featured on Channel 5 News,

BBC Look South were there and you can see their report (from 4:10) here:
http://www.bbc.co.uk/programmes/b08bc10r


The issue was also featured on Sky News which you can find here: http://news.sky.com/story/call-for-group-b-strep-tests-to-prevent-baby-deaths-10739624



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Group B Strep Support logo
FOR IMMEDIATE RELEASE - Monday 23rd January 2017
  • Fiona Paddon (who started the petition)
  • Matthew Pennycook, MP for Greenwich & Woolwich (Fiona's MP)
  • Sir Nicholas Soames, MP for Mid Sussex (GBSS Patron)
Fiona Paddon:
"I started this petition because I could not bear the thought of others suffering the needless loss and heartache we have experienced by losing our beautiful son, Edward, due to group B Strep.

The level of support it has received is well beyond any target I could have imagined and today, I feel that I am here to speak with the force of quarter of a million voices to those with the power to stop GBS from wrecking any more lives. To them I say – make that change right now; action the petition’s objectives today and help prevent the heartbreak of baby loss to GBS."


Matthew Pennycook MP:
“The heartbreak that my constituents Fiona and Scott have gone through after the loss of their son, Edward, is unimaginable. I fully support their calls on the Government to inform all expectant parents about group B Strep and offer all women testing for group B Strep in pregnancy.”

Sir Nicholas Soames MP:
“For too long the UK has trailed behind our peers on how we reduce group B Strep infection in babies. Yet more and more families every year are suffering the devastation that avoidable group B Strep infection can bring.

I applaud Fiona and Scott for their brave work, following the tragedy of their son’s death from group B Strep infection, to get the Department of Health to see sense. We must change what we do – by informing all expectant parents of group B Strep, and offering women the opportunity to be tested in pregnancy – to reduce these awful infections in newborn babies.

I’m delighted that Fiona and Scott are working closing with the charity, Group B Strep Support, of which I am Patron, who work tirelessly to achieve this aim.

If we continue what we’ve always done, we will get what we have always got – and in the UK that is a higher than necessary and rising number of potentially avoidable group B Strep infections in newborn babies, resulting in too many families suffering unnecessarily the trauma of infant death, disability or illness.”

Bereaved Parents to Deliver 250,000-Strong Petition to Department of Health Calling for Action to Protect Newborn Babies

Bereaved parents, Fiona Paddon and Scott Bramley, today deliver a Change.org petition of over 250,000 signatures to the Department of Health, Richmond House, Whitehall, Monday 23rd January 2017 at 11am.

Their petition calls on Secretary of State for Health Jeremy Hunt, the Chief Medical Officer for England, Prof Dame Sally Davies and the Chief Executive of Public Health England, Dr Duncan Selbie to ensure sensitive testingfor group B Streptococcus (GBS or Strep B) carriage is routinely and freely available for all pregnant women in the UK. Routinely offering these tests could prevent over 80% of GBS infections in newborn babies born to women carrying the bacteria, and would cost just £11 per test.

Group B Strep is the UK’s most common cause of life-threatening infection in newborn babies, causing meningitis, sepsis and pneumonia. Carried normally by one in every four women, the group B Strep bacteria can pass from a pregnant woman to her baby around birth with potentially devastating consequences for the baby.
On average in the UK;
  • One baby a day develops group B Strep infection
  • One baby a week dies from group B Strep infection
  • One baby a fortnight survives group B Strep infection but is left with long-term disabilities
Yet, unlike most other developed countries, health professionals in the UK rarely tell pregnant women about GBS and only rarely offer sensitive testing.

Jane Plumb MBE, CEO of national charity Group B Strep SupportMatthew Pennycook MP (Fiona and Scott’s MP) and Sir Nicholas Soames MP (Patron of Group B Strep Support) plus other parents affected by group B Strep, join Fiona and Scott to deliver the petition.
Scott, Fiona and baby Edward
Fiona Paddon gave birth to her son Edward after a gruelling 34 hour labour, followed by an emergency C-section under general anaesthetic.

Coming to from the general anaesthetic, Fiona’s nightmare continued – she was told that Edward had been born very sick with a group B Strep infection; he had been pale, floppy and unresponsive. The doctors had transferred him to the Neonatal Intensive Care Unit (NICU) for cooling treatment, as he had brain damage from a lack of oxygen to his brain.

Following this treatment, Fiona and Scott waited anxiously for the results of an MRI scan of his brain. Sadly, this 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.

Had Fiona been tested for group B Strep during pregnancy and offered antibiotics in labour, it’s almost certain Edward would be alive and well today.

Fiona Paddon says: “It's almost impossible to think that your baby will die and to be told that I could have been tested, and then successfully treated, for the very thing that killed Edward is almost too much to bear"

“If I had been tested, I would've been given antibiotics in labour which almost always prevent tragedies like ours.”
Jane Plumb MBE, Chief Executive of Group B Strep Support adds,
“More and more babies are suffering devastating group B Strep infections. Yet in other countries, most of these infections would be prevented. Our babies deserve better.

Fiona's petition is especially timely - the UK National Screening Committee looks likely, again, to refuse to introduce a group B Strep screening in the UK, but to wait for yet more research. If that's their decision next month, they'll condemn more families to the pain and devastation of their babies suffering preventable and sometimes devastating group B Strep infections.

This petition shows just how much the public is behind this. Isn't it a no-brainer that women should be given information about group B Strep, and offered the opportunity to be tested for it in pregnancy? This is international best practice. Why is it not happening in the UK?"


National charity Group B Strep Support campaigns for greater awareness of group B Strep in new and expectant parents and wants every pregnant woman in the UK to be given accurate information about group B Strep as a routine part of antenatal care, coupled with the offer of testing for group B Strep carriage at 35-37 weeks of pregnancy.


For information on group B Strep, please visit http://www.gbss.org.uk

Notes to Editors:

  • *Sensitive testing refers to Enriched Culture Medium (ECM) testing, recognised as the international gold standard, and designed specifically to detect group B Strep carriage. This contrasts with the standard, non-specific test usually used within the NHS and which has a high false-negative rate, missing around half the women carrying group B Strep.
  • Group B Strep is the most common cause of life-threatening infection in newborn babies and meningitis in babies up to the age of 3 months, passing from mother to baby during labour and birth.
  • 20% to 30% of women carry group B Strep, usually without harm or symptoms. Identifying pregnant women likely to be carrying group B Strep infection and giving them intravenous antibiotics (usually penicillin) during labour can reduce group B Strep infection in newborn babies born to women carrying group B Strep by up to 90%.
  • By 2014, the number of newborn babies developing group B Strep infection had risen by 33% since the Royal College of Obstetricians & Gynaecologists 2003 prevention guidelines were introduced. These guidelines (updated 2012) had been expected to reduce the incidence of early-onset group B Strep infection significantly – by up to 60%. This has not happened (see Data Series).
  • Even with the best medical care one in 10 babies of babies sick with group B Strep infection dies, one in 20 of the survivors of group B Strep infection suffer long-term problems, with five in 10 survivors of group B Strep meningitis suffering long-term mental and physical problems, including cerebral palsy.
  • Routine testing of all pregnant women in the UK for group B Strep carriage is not currently recommended by the UK National Screening Committee.
  • Carrying group B Strep at delivery is the key risk factor for group B Strep infection in babies. Determining whether a pregnant woman carries group B Strep late in pregnancy (35-37 weeks) is a better indicator of a baby’s risk of developing the infection than risk factorsOther countries which routinely screen have seen falls in the rate of these infections in newborn babies by up to 86%.
  • Providing the test on the NHS would cost £11 per test. Private, home-testing kits are available from under £40. Visit Testing
Copyright © 2017 Group B Strep Support, All rights reserved.


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