Paddling in a bay on the tiny Channel Island of Sark, I suddenly felt very sick and cold.
Less than 48 hours later, I was being emergency evacuated to the intensive care unit of a London hospital via cart, tractor, lifeboat, private jet and ambulance.
Ultimately, an incredible team of doctors, nurses, and volunteers saved my life – for a second time, though falling ill with one of the rarest diseases in the world while in one of the remotest corners of the British Isles was an unfortunate first.
Image: Deborah Haynes covers some of the biggest foreign stories around the world. She also hosts The Wargame podcast
I have something called atypical Haemolytic Uremic Syndrome (aHUS) that – when triggered – affects my immune system, destroying blood cells and harming other vital bodily functions.
Classed as “ultra-rare”, there is only around one new incident of aHUS per two million people every year. And an attack can be fatal, so the speed of diagnosis is key.
In my case, I already knew about the condition as I first fell ill with it eight years ago.
When it happened a second time, the heroic efforts of Sark’s only doctor, a group of volunteer rescuers and the medics at University College Hospital (UCH) meant I was raced from the middle of the English Channel to an intensive care bed in just over 11 hours – enabling rapid and effective treatment.
Now back home and expected to make a full recovery, I thought I would share my experience to help raise awareness about this little-known disease as today is aHUS Awareness Day.
Image: Deborah Haynes in ICU after falling ill with atypical Haemolytic Uremic Syndrome (aHUS)
‘I was feeling increasingly wretched’
My husband and I had planned to spend a few days in August on Sark – a beautiful island in between the UK and France that is a designated “dark sky” area because of an absence of light pollution.
There are no public streetlights on the territory.
More relevant to this story, cars and regular ambulances are also banned.
Instead of driving, Sark’s just over 500 residents and ferry-loads of tourists either walk, cycle or sit on the back of carts towed by horses – and on occasion tractors – to visit beaches, coves and other attractions.
Image: A some 100-metre-high ridge connects the rock islands on Sark. File pic: AP
I started to feel queasy on the ferry that took us to Sark.
We initially thought it was seasickness.
But the nausea lingered as we walked from the port to our hotel to dump our bags.
Thinking a swim might make me feel better, we trekked down a steep path to the beach and ventured into the sea, which is when my body decided to break.
I came out of the water, shivering uncontrollably and thought I was going to faint. After getting myself dry, we tried to return to the hotel, but I started vomiting violently on the side of the path – much to the disgust of a family that was trying to overtake us.
Once back at the hotel, I collapsed into bed, only leaving it to be sick.
We speculated that it must be food poisoning and hoped it would pass within a day.
But 24 hours later, while I had stopped vomiting, I was feeling increasingly wretched and beginning to wonder whether it could be aHUS again.
Image: The ‘ultra-rare’ condition is caused by part of the immune system becoming overactive
‘The onslaught is like an invisible storm’
The only other time I have been struck down by the disease was in January 2017, while working as the defence editor at The Times.
On that occasion, I took myself to my local hospital in Kent to be told that I had acute kidney failure and my bloods were “deranged”.
Fortunately, the haematologist on duty had been aware of aHUS – then a new acronym for me – and had me rushed to University College Hospital in London, which has a specialist team that can treat the condition led by Professor Marie Scully, a world-renowned expert.
I soon learnt that aHUS is caused by part of my immune system – called the complement system – becoming overactive and attacking my body rather than targeting bugs.
This “friendly fire” – likely linked to a genetic glitch that, in my case, had thankfully lain dormant for the first 40 years of my life – can be activated by infection, pregnancy or food poisoning, though sometimes the cause is unknown.
The subsequent onslaught is like an invisible storm that destroys a patient from the inside, shattering red blood cells, damaging small blood vessels and causing tiny clots.
The clots clog up kidneys and trigger acute renal failure.
If left untreated, other organs can also collapse, while the risk of a stroke or heart attack rises.
Without intervention, the prognosis is dire.
Between 10 to 15% of patients die during the initial illness, while up to 70% of patients develop end-stage renal failure, requiring a lifetime of dialysis.
Since 2013, however, patients in the UK have had access to a drug called eculizumab, which effectively turns off the malfunctioning part of the immune system. It is expensive – at many thousands of pounds a shot – but it saves lives, including mine.
Image: An aHUS attack can be fatal, so the speed of diagnosis is key
‘My protein levels were off the scale’
Lying in bed in Sark more than eight years on from the first episode, I did not want to believe my body had turned on itself again.
But after a little over 36 hours, with no improvement, my husband decided to get help.
His action likely saved me from even graver kidney damage or worse.
He set out to find Sark’s only GP, Dr Bruce Jenkins.
Blood tests are the best way to diagnose aHUS, but they were not an option on the island.
Instead, Dr Jenkins did a urine test, which is a good alternative.
Any trace of blood or protein in the urine is a sign that a person’s kidneys are in trouble.
My protein levels were off the scale of the test.
Upon seeing the result, Dr Jenkins instructed my husband to go back to our hotel and pack our bags – I was still floundering in bed – while he coordinated an emergency evacuation.
On Sark, given the lack of vehicles, this meant mobilising an ambulance cart towed by a tractor, which is operated by a team of Community First Responders – all volunteers.
Image: The Sark medical team who helped save Deborah’s life
The GP also contacted the main hospital on Guernsey, a larger Channel Island, which provides a marine ambulance service to rescue anyone with a medical emergency on Sark.
While all this was happening, I called an emergency number for the aHUS medics at University College Hospital to warn them I was likely suffering a relapse.
By chance, Professor Scully was on duty that day – a Friday – and over the weekend. She and her team sprang into action, contacting Sark and Guernsey to help.
Speed was key as my condition was worsening.
‘I asked a doctor if I was going to die’
Within minutes of the alert going out from Dr Jenkins, a tractor, pulling a white ambulance cart, arrived at our hotel, and the first responders guided me and my husband onboard.
They took us to the port to wait for the “Flying Christine”, an ambulance boat carrying two paramedics and operated by St John’s Ambulance and Rescue Service.
That team transported us via sea to Guernsey hospital before we were transferred to a specialist medical plane to be flown to Luton airport.
The last leg was a more conventional ambulance drive to UCH, where critical care doctors, as well as Professor Scully and her colleagues, were poised to start the treatment.
This quick response by the NHSand a network of volunteers meant I was taken from my sickbed in Sark to life-saving treatment in London in barely 11 hours.
By this point, the aHUS attack had caused my haemoglobin and platelet levels to drop, and my kidneys were failing.
The main treatment was the eculizumab drug – administered intravenously – but I also needed blood transfusions and to be put on a machine that acts as a form of dialysis.
The relief of being in the best possible place for my condition was immense, but the next few days were still frightening as my body took time to respond.
At one point, I asked a doctor if I was going to die – she assured me I was not.
Image: Deborah has now been discharged and says she is ‘on the mend’
On another occasion, pumped full of medication, hooked up to various machines and drifting in and out of sleep, I dreamt I was under missile fire – an occupational hazard of being a journalist who covers war – and tried to leap out of bed to an imaginary shelter, prompting the nurse who was looking after me to spring into action and make sure I stayed put.
Gradually, though, the treatment started to work.
After nearly a fortnight in hospital, including one week in intensive care, I was well enough to be discharged.
Today, I am on the mend and incredibly grateful to everyone who helped to save me from myself.
Deborah Haynes and Professor Marie Scully will be on Sky News from 8.30am to speak about aHUS Awareness Day.
What is aHUS?
Atypical haemolytic uraemic syndrome is an ultra-rare disease that affects between 2.7 and 5.5 people per million population worldwide. It has an incidence rate of about 0.4 people per million a year and can occur at any age.
The disease affects part of the immune system called the complement system. It starts to destroy the body’s own cells, especially those that line blood vessels. This leads to clots forming within small vessels. The kidney is most commonly impacted, but all organs can be harmed.
AHUS is typically linked to a genetic fault in the complement system or a group of proteins meant to regulate it.
The trigger for an attack can be infection, pregnancy or food poisoning.
Symptoms can include feeling unwell or tired, becoming confused, blurred vision, shortness of breath, high blood pressure, nausea and vomiting, diarrhoea and abdominal pain.
Over and over again, in the run-up to the election and beyond, the prime minister and the chancellor told voters they would not put up taxes on working people – that their manifesto plans for government were fully costed and, with the tax burden at a 70-year high, they were not in the business of raising more taxes.
On Wednesday the chancellor broke those pledges as she lifted taxes by another £26bn, adding to the £40bn rise in her first budget.
She told working people a year ago she would not extend freezing tax thresholds – a Conservative policy – because it would “hurt working people”.
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3:00
Beth Rigby asks Reeves: How can you stay in your job?
On Wednesday she ripped up that pledge, as she extended the threshold freeze for three years, dragging 800,000 workers into tax and another million into the higher tax band to raise £8.3bn.
Rachel Reeves said it was a Labour budget and she’s right.
In the first 17 months of this government, Labour have raised tens of billions in taxes, while reversing on welfare reform – the U-turn on the winter fuel allowance and disability benefits has cost £6.6bn.
Ms Reeves even lifted the two-child benefit cap on Wednesday, at a cost of £3bn, despite the prime minister making a point of not putting that pledge in the manifesto as part of the “hard choices” this government would make to try to bear down on the tax burden for ordinary people. The OBR predicts one in four people would be caught by the 40% higher rate of tax by the end of this parliament.
Those higher taxes were necessary for two reasons and aimed at two audiences – the markets and the Labour Party.
For the former, the tax rises help the chancellor meet her fiscal rules, which requires the day-to-day spending budget to be in a surplus by 2029-30.
Before this budget, her headroom was just £9.9bn, which made her vulnerable to external shocks, rises in the cost of borrowing or lower tax takes. Now she has built her buffer to £22bn, which has pleased the markets and should mean investors begin to charge Britain less to borrow.
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6:19
Reeves announces tax rises
As for the latter, this was also the chancellor raising taxes to pay for spending and it pleased her backbenchers – when I saw some on the PM’s team going into Downing Street in the early evening, they looked pretty pleased.
I can see why: amid all the talk of leadership challenge, this was a budget that helped buy some time.
“This is a budget for self-preservation, not for the country,” remarked one cabinet minister to me this week.
You can see why: ducking welfare reform, lifting the two-child benefit cap – these are decisions a year-and-a-half into government that Downing Street has been forced into by a mutinous bunch of MPs.
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With a majority of 400 MPs, you might expect the PM and his chancellor to take the tough decisions and be on the front foot. Instead they find themselves just trying to survive, preserve their administration and try to lead from a defensive crouch.
When I asked the chancellor about breaking manifesto promises to raise taxes on working people, she argued the pledge explicitly involved rates of income tax (despite her pledge not to extend the threshold freeze in the last budget because it “hurt working people”).
Trying to argue it is not a technical breach – the Institute of Fiscal Studies disagreed – rather than taking it on and explaining those decisions to the country says a lot about the mindset of this administration.
One of the main questions that struck me reflecting on this budget is accountability to the voters.
Labour in opposition, and then in government, didn’t tell anyone they might do this, and actually went further than that – explicitly saying they wouldn’t. They were asked, again and again during the election, for tax honesty. The prime minister told me that he’d fund public spending through growth and had “no plans” to raise taxes on working people.
Those people have been let down. Labour voters are predominantly middle earners and higher earning, educated middle classes – and it is these people who are the ones who will be hit by these tax rises that have been driven to pay for welfare spending rather than that much mooted black hole (tax receipts were much better than expected).
This budget is also back-loaded – a spend-now-pay-later budget, as the IFS put it, with tax rises coming a year before the election. Perhaps Rachel Reeves is hoping again something might turn up – her downgraded growth forecasts suggests it won’t.
This budget does probably buy the prime minister and his chancellor more time. But as for credibility, that might not be recoverable. This administration was meant to change the country. Many will be looking at the tax rises and thinking it’s the same old Labour.
Britain’s top military chiefs held a “very difficult” meeting this week over how to fund plans to rebuild the armed forces amid fears of further cuts, defence sources have said.
The Ministry of Defence (MoD) played down a report in the Spectator magazine that the top brass, led by Air Chief Marshal Sir Rich Knighton, the chief of the defence staff, planned to write an extraordinary joint letter to John Healey, the defence secretary, to explain that his defence review published in June cannot be delivered without more cash.
“There is not a letter,” an MoD source said, adding that such a communication was not expected to be received either.
However, other sources from within the army, navy and air force confirmed to Sky News there is growing concern among the chiefs about a gap between the promises being made by Sir Keir Starmer’s government to fix the UK’s hollowed-out armed forces and the reality of the size of the defence budget, which is currently not seen as growing fast enough.
That means either billions of additional pounds must be found more quickly, or ambitions to modernise the armed forces might need to be curbed despite warnings of mounting threats from Russia and China and pressure from Donald Trump on the UK and the rest of Europe to spend more on their own defences.
“The facts remain that the SDR (Strategic Defence Review) shot for the stars, but we only have fuel for the moon,” one source said.
A second source agreed.
Image: Pic: Ministry of Defence
By way of example, they said General Sir Roly Walker, the head of the army, was all too aware of the financial challenges his service in particular was facing, especially given plans to regrow the force to 76,000 soldiers from 72,500 in the next parliament.
The defence review set out the requirement for more troops, but such a move would need sufficient money to recruit, train and equip them.
There is also a goal to expand reserve forces, which similarly costs money.
Air Chief Marshal Knighton and General Walker were joined in the meeting on Tuesday at the Ministry of Defence by the other service heads, General Sir Gwyn Jenkins, the First Sea Lord, and Air Chief Marshal Harv Smyth, the Chief of the Air Staff.
General Sir Jim Hockenhull, the commander of Cyber and Special Operations Command, was also likely to have been present.
It is a regular fortnightly gathering of chiefs.
This week they discussed the content of an upcoming plan on defence investment that is expected to be published next month – a timeline that is understood to have been delayed because of friction over how to make the money match the ambition.
“I know there was a very difficult meeting,” a third source said.
“Shoehorning the SDR into the DIP (Defence Investment Plan) as inflation, foreign exchange movement, re-costing, in-year delivery drama and unforeseen additional costs arise was always going to be hard,” the source said.
“The amount of money needed to make the thing balance is both small compared to other parts of the public sector, but also not available from this government. It’s still a matter of choices, not overall affordability.”
The source pointed to what Germany and Poland are doing on defence, with both countries significantly and rapidly ramping up defence spending and expanding their militaries.
By contrast, the UK will only inch up its core defence budget to 2.5% of GDP from around 2.3% by 2027, with plans to hit a new NATO target of 3.5% not expected to be reached until 2035.
Responding to the Spectator claim, an MOD spokesperson said: “All of defence is firmly behind delivery of our transformative Strategic Defence Review (SDR), which set out a deliverable and affordable plan to meet the challenges, threats, and opportunities of the 21st century.
“The plan is backed by the largest sustained increase in defence spending since the end of the Cold War – hitting 2.6% of GDP by 2027.”
The 2.6% figure cited by the spokesperson also includes intelligence spending on top of core defence spending.
On the edge of the Chilterns and 30 minutes from central London by train, it’s Britain’s most expensive market town for first-time buyers. It’s also been voted one of the top 10 best, and top 20 happiest, places to live in the country.
Last summer Labour did well in the polls here too. Hitchin’s 35,000 inhabitants, with above average earnings, levels of employment, and higher education, ejected the Conservatives for the first time in more than 50 years.
Having swept into affluent southern constituencies, Rachel Reeves is now asking them to help pay for her plans via a combination of increased taxes on earnings and savings.
While her first budget made business bear the brunt of tax rises, the higher earners of Hitchin, and those aspiring to join them, are unapologetically in the sights of the second.
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2:37
How will the budget impact your money?
Kai Walker, 27, runs Vantage Plumbing & Heating, a growing business employing seven engineers, all earning north of £45,000, with ambition to expand further.
He’s disappointed that the VAT threshold was not reduced – “it makes us 20% less competitive than smaller players” – and does not love the prospect of his fiancee paying per-mile to use her EV.
But it’s the freeze on income tax thresholds that will hit him and his employees hardest, inevitably dragging some into the 40% bracket, and taking more from those already there.
“It seems like the same thing year on end,” he says. “Work harder, pay more tax, the thresholds have been frozen again until 2031, so it’s just a case where we see less of our money. Tax the rich has been a thing for a while or, you know, but I still don’t think that it’s fair.
“I think with a lot of us working class, it’s just a case of dealing with the cost. Obviously, we hope for change and lower taxes and stuff, but ultimately it’s a case of we do what we’re told.”
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3:00
‘We are asking people to contribute’
Reeves’s central pitch is that taxes need to rise to reset the public finances, support the NHS, and fund welfare increases she had promised to cut.
In Hitchin’s Market Square it has been heard, but it is strikingly hard to find people who think this budget was for them.
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8:41
OBR gives budget verdict
Jamie and Adele Hughes both work, had their first child three weeks ago, and are unconvinced.
“We’re going to be paying more, while other people are going to be getting more money and they’re not going to be working. I don’t think it’s fair,” says Adele.
Jamie adds: “If you’re from a generation where you’re trying to do well for yourself, trying to do things which were once possible for everybody, which are not possible for everybody now, like buying a house, starting a family like we just have, it’s extremely difficult,” says Jamie.
Image: Hitchen ditched the Conservatives for Labour at the 2024 election
Liz Felstead, managing director of recruitment company Essential Results, fears the increase in the minimum wage will hit young people’s prospects hard.
“It’s disincentivising employers to hire younger people. If you have a choice between someone with five years experience or someone with none, and it’s only £2,000 difference, you are going to choose the experience.”
After five years, the cost of living crisis has not entirely passed Hitchin by. In the market Kim’s World of Toys sells immaculately reconditioned and repackaged toys at a fraction of the price.
Demand belies Hitchin’s reputation. “The way that it was received was a surprise to us I think, particularly because it’s a predominantly affluent area,” says Kim. “We weren’t sure whether that would work but actually the opposite was true. Some of the affluent people are struggling as well as those on lower incomes.”
Customer Joanne Levy, shopping for grandchildren, urges more compassion for those who will benefit from Reeves’s spending plans: “The elderly, they’re struggling, bless them, the sick, people with young children, they are all struggling, even if they’re working they are struggling.”