My son’s rare life-threatening illness has him bleeding in A&E weekly – I’m worried about the strikes

A baby with glanzmann's thrombasthenia and a woman in a car.
A baby with glanzmann's thrombasthenia and a woman in a car.

December 20, 2022


Last Saturday night, I frantically rushed to A&E with my four-year-old son Felix.

He has a rare, life-threatening bleeding disorder called Glanzmann’s thrombasthenia.

Felix’s condition means his blood has difficulty clotting, which results in spontaneous and life-threatening bleeds at any time, frequently from his nose and mouth.

On a day-to-day basis, even a slight bump or scrape in the playground can bring on a bleed.

I always have to be on high alert and ready to deal with any episodes. This time, it was an infection in his port-of-cath, a tube that gives easy access to his veins for treatment.

He’s been to A&E countless times, sometimes multiple times a week and frequently on a monthly basis. I’ve spent Christmas in A&E, New Year, and birthdays. I’ve seen the chaos of Friday nights and been put into isolation units in Covid-19 times.

But while I am used to normally being hurried through paediatric A&E so that they can give him clotting factors such as NovoSeven and HLA platelets – this time something else was happening.

The central London A&E was unusually overflowing, and the whole place seemed completely run ragged – with staff running around and desperate parents begging to be seen.

Due to its rarity, my son’s specialist always calls ahead from Great Ormond Street Hospital to stress his urgent protocol, but this time the nurses appeared to have so many emergencies to deal with.

‘Sorry, we’ll be back soon,’ the nurse gasped when my son’s specialist called again shortly after arrival. But I didn’t see anyone for another five and a half hours. All I could do was hold my son, and hope for the best.

Only around one in one million people have Glanzmanns, so it is not uncommon for me to turn up to A&E only to be asked how to spell it, as medics have never heard of it, let alone treated it.

When we did get seen, he needed immediate intravenous access but they had no beds or spaces in any wards in the whole hospital.

Three hours later, staff hastily put him in a corner at the end of a hall on an examination table, but the nurse shared that there were still several more patients in front of us.

After he was given an antibiotic IV, we were told to come back in three hours when they would hopefully find a bed as he still needed urgent treatment.

By this point we’d waited for 11 hours, had been awake all night and my son still had a fever of 41.

Even though it was dangerous to leave the hospital, for the risk of infection worsening, the nurse apologised and even admitted to us the ward was ‘at breaking point’.

She said they had so many sick children admitted through the night, yet they did not have enough beds for them all and yet more kept coming. I felt really sorry for her as she looked and sounded exhausted.

As instructed, we went home for a couple of hours, although there was no time for sleep and then we went back for more treatment on the same day.

Throughout the next night, Felix worsened with a severe bleeding episode, and in the morning we were admitted to GOSH where he received care for several days.

But the whole experience in A&E left me scared and frightened, not just for the patients but the overworked staff.

It’s no surprise that the NHS has been understaffed and underfunded for a long time, with soaring A&E waiting times at an all-time high, peaking at 12 hours plus.

Now, it has been revealed that, for the first time ever, more than 300,000 nurses and doctors will strike, in action which could last six months.

This has been predicted to go down the chain, affecting not only wards but A&E staff across the country are at risk of striking, too. It’s left me scared for Felix.

My son needs acute day-to-day and prolonged night-time care, weekly treatment, and routine operations – as well as emergency care.

While I have learned to administer his vital injections at home for mild bleeds, longer bleeds need to be managed in an urgent hospital environment as the blood flow will not stop without medical intervention.

While his condition is serious, living in central London has always helped as I’m able to get to many London hospitals within 15 minutes.

It’s lucky I live so close, as calling an ambulance is no longer an option anymore either, as waiting times are only getting worse – and paramedics are set to strike too, covering only life-threatening emergencies. I’ve learned it’s quicker to order a taxi (although I have the worst Uber rating ever due to bringing a bleeding child into vehicles).

I’ve spent many nights staring at the starkly lit walls of A&E, waiting to be seen, terrified.

But lately, I have noticed that we are waiting longer and longer. The thought of my son not being able to receive urgent medical care scares me gravely, particularly with the latest nurses’ strikes.

There is also the added factor that my son’s IV medicine needs to be given 90 minutes apart in doses, something that frequently does not happen in A&E, which can cause his bleeding to worsen.

Nurses earn approximately £130 per shift on average and, given they are responsible for people’s lives, I wholeheartedly believe they deserve the pay rise they are striking for.

This hits harder with the cost-of-living crisis, rising energy bills, and with it recently reported that some nurses are resorting to food banks to get by.

I have nothing but admiration for the amazing care that nurses provide, and feel it’s only right that they should be compensated for their hard work with a pay rise – but I fear that strikes will make an overstretched system fall into catastrophe.

Sadly, it is common for nurses to be overstretched and overworked, I’ve seen for myself the staff working 12-hour shifts without a break, yet they are the binding NHS care in hospitals.

I really do sympathise with the nurses and while I know there are other non-striking ways to attempt to make progress, such as picketing, overtime bans, and more public awareness, I feel the ultimate answer lies with Rishi Sunak to bring their wages up to speed with inflation, just as he did in 2020.

Due to the latest incident in A&E, my son’s specialist has decided to make a laminated booklet of what the doctors and nurses should do in emergencies to help save time and avoid confusion over treatment.

I hope I don’t have to use it, but I know the depths of this sad reality already.

While last Saturday night has prepared me somewhat for the strikes, I will always live in fear of what will happen in the next emergency.