There's a special little place in our fridge for Clarithomycin.
Here we are again... Poor Hermione started with a sore throat and a cough on Friday night.
By Saturday night, Strep A was confirmed and antibiotics were given.
I think we caught it at the right time and got the medication she needed before it took hold. But, as is often experienced, it was a difficult process to get what she needed.
By the time we actually entered a doctor's room, at 7pm last night, Hermione had developed a rash and a fever. It was 7 hours after our initial call to 111.
Hermione's nose was sticky with mucus, and her eyes were grey with tiredness. We'd exhausted all options with Waffle the Wonder Dog and Dip Dap on the iplayer, after two hours sitting in the car. We decided to wait in the car initially, but now we moved inside, after rain came pummelling down on the car; something which makes Hermione nervous in the best of circumstances.
The call handler in the morning was amazing and so helpful. She took all Hermione's history and listened attentively. She consulted a clinician, who spoke to me and agreed Hermione would need to see a GP but not A&E. We agreed that what she probably needed was antibiotics, and quickly.
We were told we would have a call within the hour, perhaps slightly longer due to what we're all used to at the moment: the waits within the NHS. I am sympathetic to this.
After 4 hours, and no call back, I decided to chase our call up, as Hermione was not eating or drinking, and we could see the way it was going: we were going to end up in hospital again.
This time the call handler was not so understanding to our circumstances. As I outlined Hermione's recent history of the hospital stay, and the very basic fact that Hermione's condition means she has a lower immune system and things can turn quite serious quickly, I was told there was no point telling her and I should get off the phone in case I get a call.
You can imagine my feelings.
'Has anything changed?' she said.
'No, but she's not eating or drinking and when this happened last time she ended up in hospital.'
Desperately trying to prevent another wait for hours in A&E, Danny called the walk-in centres to see what kind of wait times we were looking at there.
Funnily enough, we then got a call from a GP on my phone, telling us to come to a walk-in centre.
We packed a bag and left.
Hermione's head bobbed around in the back of the car; trying to sleep off the broken night's sleep the night before.
The staff were great at the centre, and said it was fine to wait in the car, and they would ring us when they were ready for Hermione.
Two hours passed, and we are now at pummelling rain point, and this is where the story picks up at Hermione's grey eyes and sticky nose.
Within minutes, the GP noticed the rash and the temp (not present hours earlier) and because Hermione becomes distressed at any kind of examination, she cried with an open mouth, which allowed us to see inside her mouth, which was definitely white coated.
The GP was kind. He fist bumped Hermione. He held his hands out to her. He spoke softly. We signed 'well done' and 'doctor' and 'better soon.'
Hermione signed 'home' and her chin wobbled.
My heart broke.
My post isn't to bash the NHS. Most people who dealt with us, apart from that one call handler, were amazing.
But when Mr Sunak declines to answer whether he uses private health care, I can't help but feel the anger rise within me.
Sure, he'd still have to use the NHS for emergency care. But you can't mean to tell me his kids would be waiting to get treatment for 7 hours for suspected Strep A. Add in our personal circumstances with having a vulnerable child; a disabled child, I can put money on it he would not have to wait.
'Be vigilant' was the Health Secretary's, Steve Barclay's advice to parents when the news of Strep A infections began hitting the news.
Yep, sure thing Mr Barclay. Here's me being vigilant. Here's me trying to prevent another hospital stay for Hermione: arguably more costly for the NHS than seeing a GP and getting a prescription for antibiotics.
My head and heart is tired with the fight.
The fight to be heard.
The strength it takes to start all over again: to explain Hermione's circumstances: to convince them Hermione's condition is a contributory factor to what renders her a bit more of a priority.
But it seems vulnerability does not make you a priority in this system.
I've torn myself apart thinking about how people with disabilities were treated during the pandemic. Placed back into care homes, or issued 'do not resuscitate' orders without consent.
Last night, I squared my shoulders, swallowed my anger, thanked the wonderful doctor, and clutched Hermione's prescription, exhausted but grateful. I pasted on a smile for Hermione, and signed 'home' and 'you were brave' and I promised that she could watch whatever she liked on the TV when we returned home.
It's hard. It really is so hard to continue utilising a system that we so desperately need for our disabled child and keep chipper for her, who needs us to help her make sense of the world, at all times. More often than not, I cannot make sense of it myself.
A 7 hour wait for a child who does not know why she needs to eat and drink to stay alive, is not commitment to improving the NHS.
Announcing that children should learn maths until they're 18 is dithering whilst Rome burns.
Some days I cannot swallow my anger. And I guess today I cannot.
Hermione is tucked up asleep and safe at home tonight, but it could have easily been different. We could have easily ended up in a hospital bed, when what we needed was our concerns to be taken seriously, and a call from a GP sooner than what we experienced.
I stroke Hermione's head tonight, with all the protection of a mama bear, hoping that the people who currently make the decisions wake up to their moral responsibilities.
*Pic of me when we were in hospital, after 7 nights of no sleep, and worrying if we would ever get discharged.
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