Reading the news, I gave a nod of satisfaction.
Having followed the progress of Martha’s rule – where seriously ill patients can easily access a second opinion if their condition worsens – I was so pleased to see it was finally being implemented in 100 hospitals in England.
It is only a start, admittedly, but it is a crucial step in making a huge change.
Yet, I’m also sad. Sad that we’re in a time where we have to put in a rule to mitigate against patients not being listened to.
Having lost my one-year-old son, William, to sepsis after doctors ignored my worries, I know more than anyone just how tragic the consequences of that can be.
When I fell pregnant in 2013, it was a real blessing. Me and my now-husband, Paul, had tried for years for a baby. Then as soon as we stopped trying, it just happened. We were over the moon.
We found out at 16 weeks we were having a boy. And when William arrived in November 2013, we couldn’t have wished for anything more.
He was so calm and placid. He slept well, never had temper tantrums. Just gorgeous.
He loved the water, splashing in the bath and bobbing in our arms in our local pool. And whenever we put music on, he’d rock from side to side and clap his hands, grinning in delight.
And, when I returned to work in September 2014, he settled really well at nursery.
I’d been prepared, though, for him mixing with new children and picking up new germs. And sure enough, a few weeks in, he developed tonsillitis. I took him to the doctors, was prescribed antibiotics and he recovered.
Then, a week later, he got a cough. He didn’t seem unwell, and Paul and I presumed it would just clear up. But when it lingered on for 10 days, I made another doctor’s appointment.
‘It’s a viral infection,’ I was told and I nodded. Just what I thought it would be.
But rather than getting better, William began coughing for longer, and during the night. But again, my GP examined him and told me his chest and throat were clear. ‘It’s a viral cough,’ they said.
In November, we celebrated his first birthday party with a trip to the beach at St Ives, all bundled up against the cold, and then a party with family and friends.
But his cough still wasn’t going away. And he coughed so hard in December, he brought up his breakfast, so I took him back to the doctors again – this time, I asked to see another doctor.
Not because I consciously wanted a second opinion, just that I wanted another set of eyes on him.
But it didn’t work out like that.
‘I see he has a viral cough,’ she said, looking at the notes. Her mind was already made up – that’s what it was.
She listened to his chest, and said she could hear a faint crackle. ‘Do you think he needs antibiotics?’ I asked. ‘It has been going for about eight weeks now.’
She shook her head and, given our family history of asthma, prescribed him an inhaler.
That Thursday night, he woke in the night upset, his cheeks flushed red as I could see five white tips poking through his gums. Typical, he was teething too. I gave him paracetamol and he drifted back off to sleep.
The next morning, he seemed to have perked up, so I dropped him at nursery. But at 11am, they called. ‘He’s refused his morning snack and he has a temperature, so we’ve given him paracetamol and he’s having a nap now.’
Half an hour later, they called back. He was still asleep, but his temperature had gone up again. ‘I’m coming for him,’ I said, worried.
My doctor told me they had no appointments but, hearing my concern, told me to bring him in at the end of the day.
‘Don’t worry, it’s nothing grisly,’ the GP told me then. ‘It’s just a viral infection, and he’ll feel worse because he’s teething.’
I shook my head in frustration, he wasn’t listening to any of my worries, just explaining them away.
‘When should I bring him back if he’s still not well?’ I asked. But he just said he was sure he’d get better over the weekend.
On Saturday, he was lethargic, he didn’t even have the energy to watch the television.
In the afternoon, I called 111. They asked me to take his temperature, and it was 35.4 degrees. ‘That’s good, it’s gone down,’ the call handler told me. ‘It’s non-urgent, a doctor will call you back within six hours.’
Yet, by William’s bedtime, we’d heard nothing. I tucked him into his cot, I placed his arm around his toy reindeer. ‘Goodnight, sweetheart,’ I whispered. ‘I love you.’ I stood for a minute at the end of his cot and shook my head.
Something wasn’t right.
‘I’m calling 111 again,’ I told Paul. This time, I was transferred to a doctor. ‘In your professional opinion, what do you think I should do?’ I asked him. ‘He’s barely eaten anything and he hasn’t got to the toilet since Thursday night.’
‘His temperature has come down,’ he replied. ‘He’ll be right as rain in the morning.’
Despite his words, I couldn’t settle. I woke twice in the night to check on him, and at 5am, I noticed on our baby camera, he was having a drink from his sippy cup.
Then, at 8am, I got out of bed and wandered into his room. It was pitch black and I called his name gently. There was no response. Not then, or when I stroked his cheek or his arm. When I felt his back, he was still. Stiff.
I ran to the curtains and pulled them open. My little boy’s eyes were open. He was staring straight through me.
‘He’s dead,’ I screamed to Paul, as I ran to the phone. ‘He’s not breathing.’
I called 999 and within four minutes, paramedics were thundering up the stairs. But after a few minutes of CPR, one looked up at me. ‘I’m sorry, my love, but he’s gone,’ he said.
He had to catch me as I fell to the floor.
What are the symptoms of sepsis?
Symptoms of sepsis in adults:
Slurred speak or confusion
Extreme shivering or muscle pain
Passing no urine
Severe breathlessness
It feels like you’re going to die
Skin mottled or discoloured
Signs to look out for in children:
Fast breathing
Rash that doesn’t fade when you press it
Abnormally cold
Lethargic or hard to wake
Not passing urine
If you have any of these symptoms, ask a medic, ‘could this be sepsis?’ For more info, visit www.sepsistrust.org
They took us to the hospital and eventually a doctor told me they’d have to take my little boy away. ‘Where to?’ I asked numbly. ‘The morgue,’ he said gently. As I carried William there, I could hardly believe this was happening.
‘You’ll have to take him off me,’ I said when I arrived. ‘I can’t give him to you.’
As we stepped out of the hospital, I had no idea what to do next. What do you do when your baby is suddenly gone? When your heart is suddenly ripped apart?
At home, the silence was deafening. As a mum, you often wish your children would stop crying, or shouting. But I’d have given anything to hear William’s giggles and laughs again. For it all to be a horrible mistake.
But it wasn’t.
I returned to the hospital every day and they brought his body up so I could sit with him for an hour, just until his hand started to grow warm. Then, someone would come in, tell me it was time to leave.
They had to. I’d have held him all day if they hadn’t. Crawled into the freezer with him, if I could.
It was on Christmas Eve, as I was picking out his coffin, that I got a call after the post-mortem. ‘Did William have a cough?’ the lady asked. ‘Yes,’ I said slowly. ‘How did you know?’
‘He had pneumonia,’ she replied. It felt like a switch had been flicked as I realised. Something had gone horribly wrong.
It turned out, William’s cough had been a bacterial chest infection that, untreated, had developed into pneumonia.
On his last doctor’s appointment, his left lung had collapsed and he had fluid on his lungs. The GP hadn’t taken his heart or respiratory rate, or even his blood pressure. If he had, he would have realised William was critically unwell.
Even on the 111 call, the questions were too crude to pick up on his symptoms.
An NHS England report discovered there were four missed opportunities to save William’s life, and 16 mistakes in total that contributed to his death. So many cracks, and William had fallen through all of them.
In the end, he had passed away from sepsis – a life-threatening reaction to an infection. ‘That must be so rare,’ I thought, shocked. But it’s not. Not at all. In fact, over 2,000 children each year develop sepsis in the UK.
Since then, I have worked for the UK Sepsis Trust, so more people are aware of the signs and symptoms.
And recently, I sat on one of the boards that have piloted Martha’s rule for 18 months called Worry and Concern.
It’s the result of a campaign by Merope Mills and Paul Laity, the parents of Martha Mills. She too died of sepsis after they were ignored when they expressed concerns about Martha’s treatment and asked for her to be transferred to intensive care.
I’m so glad it is going through – hopefully it will be widened out to all hospitals, and primary care too. A second opinion should be a second opinion. Doctors should look at the previous notes, but also do full examinations themselves.
No-one knew William like I did, but I’m not medically trained. I went to the people who were there to help, but they ignored my worries.
I’m not criticising the NHS – medical staff go to work to help people. I’m aware of the huge pressures on the system, but they need to take notice of what patients and their loved ones are saying.
Because when patients aren’t listened to, their safety is compromised. Just like William’s, tragically, was.
As told to Sarah Whiteley
Do you have a story you’d like to share? Get in touch by emailing Ross.Mccafferty@metro.co.uk.
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