Cancer innovation is saving lives – but NHS is struggling to meet rising demands
“The moment you have it yourself you hear it everywhere, but for something so prevalent it’s not talked about at all,” says Patrick Keane. His right arm is plugged into a tube that runs up to a bag of clear liquid in a treatment room at the Royal Free Hospital in north London, one of the UK’s largest cancer treatment centres.
The 56-year-old’s future is dependent on the slow drip of chemicals that attack the cancer cells in his body. If the tumour in his bowel can be reduced by chemotherapy, it can then be more easily surgically removed.
Returning to duties last week after his own diagnosis, the King chose to highlight innovations in cancer research and the thousands who like him are living under the shadow of the disease.
Patrick is one. Indeed, he got his cancer diagnosis in late January, around the same time as the King, and he is taking part in an innovative clinical trial that may help future patients.
Patrick Keane is taking part in an innovative clinical trial that may help future patients
In this election year, charities are calling on political parties to produce long-term plans for tackling the disease as part of their manifesto pledges. While innovation is saving lives, there is a looming budget shortfall.
Cancer Research UK, to whom the King became patron last week, estimates there will be a £1bn gap in research funding within the next decade. This is in part due to inflation combined with the cost of living crisis impacting donations to cancer charities.
Add to this that the number of us getting cancer is increasing, projected to go up by a fifth by 2040.
The Royal Free London NHS Trust, which receives the highest number of cancer referrals in London at 50,000 a year, has seen a 10,000 increase in referrals since 2019.
It’s no surprise then that the NHS is missing targets for waiting times between urgent GP referrals and treatment.
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One in two of us will get cancer and, as Patrick knows too well, that word opens up a world of uncertainty. “The word carries so much baggage with it,” he says, and having it can send your mind to “some pretty dark places”.
He talks frankly about the treatment and its side effects, which after his first two rounds, have been minimal. “I didn’t have much of a head of hair to begin with,” he jokes.
Some of his hair has gone in patches, but asked what the hardest thing has been, he doesn’t hesitate: “My father passed away when I was 14. He died of cancer. I have 13-year-old twins so I couldn’t initially shift the thought – is this going to happen again? Passing 48, the age that my father died was a key milestone for me. My children being older than I was when my father passed away was another one.
“Nobody expects their dad to die. It’s a very unreal concept, and I’m not dying – but to try to have that conversation you know – ‘things will be fine.’ It’s very treatable.”
Two weeks after his third round of chemo, scans show the treatment has done its job, Patrick’s surgery can go ahead and is due to happen later this month.
Roopinder Gillmore, lead cancer physician at the Royal Free
More survive cancer as technology advances
Cancer is more treatable now. More of us are surviving it because technology is advancing.
At the Royal Free that ranges from a new cutting-edge £8m PET scanner, which offers a faster more accurate diagnosis, to new drugs offering greater survival chances.
Lead cancer physician at the Royal Free, Roopinder Gillmore, told Sky News: “We are doing surgery quicker, more keyhole robotic surgery in this hospital. We do liver transplants for patients with primary liver cancer, we’re trialling that out in other cancer types which is really exciting.
“We are doing more specialised radiotherapy and for me, my thing is drug treatments, and they are exponentially increasing in terms of what we can offer our patients. The big thing is immunotherapy, we didn’t have that 15 years ago. It has completely changed the outlook for people with lung cancer and skin cancer.”
Backlogs and waiting times have increased
But for all the advances, backlogs and waiting times have built up since the pandemic. The latest NHS figures show 64% of patients received their first treatment within 62 days of an urgent GP referral. The target is 85%.
That stretch on resources has a knock-on impact on patients like 29-year-old Beaux Harris.
Beaux, an actor and dancer who teaches at The Manor Dance Studio in north London, has what is called a mutated BRCA1 gene, which means her chances of getting cancer dramatically increase in her 30s.
She has a 60% chance of getting ovarian cancer and a 90% chance of getting breast cancer.
So she has decided to get a preventative double mastectomy and a hysterectomy but, due to the backlog, she has a long wait.
Beaux Harris has a mutated gene which means her chances of getting cancer dramatically increase in her 30s
‘I feel like I’ve got a ticking time bomb on me’
She says: “I feel like I’ve got a ticking time bomb on me – and it is terrifying. The truth is it doesn’t really feel like a choice when you are presented with a figure like that – it’s like saying would you get on a plane with a 90% chance of it crashing? I know I wouldn’t.”
She has been told that waiting times on the NHS for her preventative treatment is two years at the earliest.
She says people on her online support groups have waited five years. She’s also been told there’s a high chance the operation could be cancelled at the last minute if a high-demand cancer patient needs the slot.
“I could get timed out,” she says. So, she is crowdfunding to get the £50,000 plus she needs to go private.
‘I would love to be worrying about things that every other 29-year-old is worrying about’
She might need more funds if she wants some sort of normality at the end of it.
She says: “If I have a hysterectomy now, I can’t have children. So, I’m also trying to raise money to freeze my eggs. Something that is offered on the NHS to cancer patients, but not to BRCA patients.”
She certainly doesn’t want to wait until she gets cancer. Ovarian cancer is known as the silent killer due to the difficulty in early detection.
Beaux’s grandmother, her mother, and her aunt all died of cancer because of the BRCA1 mutated gene, she hopes to be the first female in her family in generations to survive having it.
“I would love to be worrying about things that every other 29-year-old is worrying about,” she says. “I’ve got some bloody Olivia awards to win!”
Indeed, Beaux is using her talents putting on performances and doing tap dance sessions to raise money for her treatment.
In some ways it is taken for granted that, because it touches so many of us, most of the money raised for cancer research in this country comes from the British public, but charities say the government needs to play a bigger role in ensuring the UK continues to innovate and improve treatment for what remains the defining health issue of our time.
UK
Brixham: Warning ‘heads are going to roll’ after water parasite outbreak – as ‘nearly every house in one close has someone ill’
Thousands of homes have had their boiling water restrictions lifted after a water tank infected with cryptosporidium was drained and cleaned, South West Water has said.
About 16,000 households in the Brixham area of Devon were told to boil their drinking water following 46 confirmed cases of the disease.
On Saturday afternoon South West Water lifted the boiling restrictions for 14,500 homes after water quality monitoring results found no traces of cryptosporidium in the Alston supply area.
Cryptosporidiosis is caused by a tiny parasite and can lead to vomiting, stomach cramps and watery diarrhoea lasting about two weeks.
More cases are expected to be confirmed due to a delay in developing symptoms – and about 100 more people around Brixham were reporting signs of it on Friday.
South West Water believes the parasite probably entered supplies through a damaged pipe in a field containing animal faeces.
A contaminated water tank at Hillhead reservoir, where cryptosporidium was detected, was drained overnight and “thoroughly cleaned” on Saturday, South West Water said.
One local resident said she knew of only four houses out of 21 in Raddicombe Close, on the outskirts of Brixham, which have not had at least one person fall ill with cryptosporidiosis.
The local MP has warned “heads are going to roll” over the incident.
Tory MP Anthony Mangnall, whose constituency includes Brixham, told LBC: “This is such a serious matter that yes, I think heads are going to roll over this.”
He claimed the supplier had been too slow to issue its safety alert.
16,000 businesses and residents are affected by the boil water notice. Pic: South West Water
Mr Mangnall said: “From starting this week with a denial from South West Water that it was anything to do with them, delaying the fact that the boil water notice came in – meaning thousands of people used the water network – to then issuing it on Wednesday, and there are a lot of people who are very ill.”
He called it an “absolutely disastrous week” and said locals were furious.
South West Water has said it’s “deeply sorry” and that it’s been “working tirelessly” to identify the source of the problem and fix it.
Bottled water stations have been set up in the area.
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Liberal Democrat leader Sir Ed Davey accused the government of not doing enough to hold water companies to account.
He told Sky News the firms were “putting profit over the environment, over public health” after multiple cases of sewage being released into rivers and seas.
“We [Liberal Democrats] wouldn’t wait for fines for pollution,” Sir Ed said.
“There should be a sewage tax on the profits of these water companies so we can get the money now.
“There needs to be much tougher regulation… and we may need to look at restructuring the whole water industry.”
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It comes as dozens of protests over sewage releases were planned for Saturday.
Surfers Against Sewage is promoting “paddle-out” demonstrations at 30 locations, with Olympian Dame Kelly Holmes among those at the event in Brighton.
The confirmed cases of a waterborne disease caused by a parasite have more than doubled.
There are now 46 confirmed cases of cryptosporidiosis, a diarrhoeal illness, the UK Health Security Agency (UKHSA) has said – with more than 100 further people reporting similar symptoms in the Brixham area.
Other reported cases of diarrhoea and vomiting in residents and visitors to the south Devon town are also under investigation. Hundreds of locals have also reported feeling unwell over the last two weeks on social media.
MPs and South West Water officials have confirmed the parasite most likely entered water supplies through animal faeces, but an investigation is still ongoing.
What is cryptosporidiosis disease?
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‘Cow faeces’ infected Devon water
The UKHSA first confirmed cases of the disease at around midday on Wednesday, while locals were initially told by South West Water that their tap water was uncontaminated and safe to drink.
But after testing supplies in the Hillhead reservoir, the water company found “small traces” of the parasite cryptosporidium – which causes cryptosporidiosis – and told residents in parts of Brixham and Alston to boil their drinking water on Wednesday.
A total of 16,000 households and businesses in Brixham, Boohay, Kingswear, Roseland and North West Paignton were impacted and offered £15 compensation at first.
Over the next two days, South West Water apologised to those affected and increased the offer to £115. Amid the chaos, one primary school closed its doors on Thursday due to not having safe running drinking water.
16,000 businesses and residents are affected by the boil water notice. Pic: South West Water
‘Very hard questions for water company’
Speaking to Sky News yesterday, South West Water’s chief customer officer Laura Flowerdew confirmed it was likely a broken air valve contaminated by animal faeces that had caused the outbreak.
However, she refused to give a timeframe on how long the incident would be ongoing – leaving thousands of residents facing an uncertain future.
Speaking on Friday at the University of Exeter, Health Secretary Victoria Atkins said there will be “very, very hard questions” for South West Water over the outbreak.
“At the moment I think we probably need to give them the space to conduct their investigation; we know that they have identified the source,” she said.
“The public will want to know how on earth that source happened, what was the chain of events that led to this, because of course we all understand the expectation that we all have when we turn our taps on is that [we get] clean drinking water and we want to be able to trust it.”
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Most cases of cryptosporidiosis pass in two weeks. Symptoms include diarrhoea and vomiting. File pic: Dr_Microbe/iStock
‘Expect to see more cases’
Totnes MP Anthony Mangnall also warned the boil notice could last “at least a further six or seven days” and called for more transparency.
Professor Paul Hunter, a specialist in medical microbiology at the University of East Anglia, told Sky News if the parasite was “a continuous thing” present in water supplies for a prolonged period, then “you’d expect to see more cases” for another two weeks.
It comes as hotel owners in the area told Sky News the outbreak has led to people cancelling their stay, while a head chef said “I can’t wash salad in the sink”.
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‘Destroyed our business’
Stephen Colemansfield, owner of Redlands Guest House in Brixham, told Sky News the outbreak has “destroyed our business at the moment”.
“Our guests have cancelled because of the mixed messages that are being sent out by South West Water.”
Rob, head chef at the Steam Packet Inn in Kingswear near Dartmouth, also said his brother-in-law is one of the 46 confirmed cases of cryptosporidiosis and has been sick for two weeks.
The UKHSA is working with Torbay Council, South West Water, NHS Devon and the Environment Agency on the incident.
Colin Smith carries a small suitcase into the dining room of their Newport home and lays it flat on the table in the centre of the room. He pops open both latches.
His wife Jan reaches inside and pulls out a sky blue child’s blanket. She holds it close to her face, closes her eyes and inhales deeply.
“It still smells of him,” she says, softly.
“This is the blanket he was wrapped in when he died.”
Their son, also called Colin, was just seven years old when he died in January 1990. His tiny body was ravaged by Hepatitis C and AIDS.
The suitcase, much like the one most families used to own in the 1980s, is just big enough to hold all the memories of their son’s short life.
Next to the blanket, are his favourite toys including a snow globe and lots of his artwork.
Jan and Colin Smith look through the suitcase containing their son’s possessions
Jan explains that Collin, loved to paint and draw and that he was very talented.
“He was 13 pounds when he died. That’s nothing is it for a seven-year-old?” Jan asks.
The question goes unanswered as a momentary silence fills the room.
Colin was born with haemophilia. The treatment for his blood clotting disorder included a product called Factor VIII.
What his parents didn’t know was that the Factor VIII was made in America using blood farmed from prisoners, drug addicts and sex workers.
Jan can recall all the fine details of that day clearly. Especially the cold, matter-of-fact way the bombshell news was delivered by doctors treating Collin.
“We went to the hospital,” Jan says, and they called us out into a corridor, kids running around, parents, and just told us that Colin had become [infected with] HIV.”
By this time their beautiful little boy had become very sick.
Colin Smith with his toys
‘You just couldn’t pick him up’
Colin senior is still haunted by the effect the virus had on his son’s body. ‘You could see every sinew and tendon in his body,” he said.
Jan said: “I think it was about ’89 that we realised because the weight loss was incredible. And we had him home for a little while, and you couldn’t just pick him up.
“We had to use a sheepskin because it hurt him. He would say: ‘Mum you’re hurting, it’s hurting’.”
Colin was treated by Professor Arthur Bloom, who died in 1992. But in the 1980s, he was one of the country’s leading haemophiliac specialists.
However, documents shown at the Infected Blood Inquiry prove Bloom’s research carried great risks and these were never explained to Colin’s parents.
Professor Arthur Bloom, who died in 1992, was one of the country’s leading haemophiliac specialists
There is a record of the first time Colin went into hospital that shows that he had never been treated for his haemophilia at this point.
Previously untreated patients were known to be useful for research as their responses to new treatments could be tracked. Patients exactly like Colin.
Also shown to the Infected Blood Inquiry was a letter from Prof Bloom to a colleague after another visit by Colin to hospital saying he’s been given Factor VIII and acknowledging that even though this was the British version there was still a risk of Hepatitis but that “this is just something haemophiliacs have to accept”.
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And a letter, dated 24 June 1983, from Prof Bloom to colleagues discusses the risk of AIDS. They accept that one possible case of AIDS has been reported.
Colin’s parents are convinced their son was being used in secret trials.
Colin Smith
“I think Colin was just unlucky enough to be born at the right time. Newly diagnosed haemophiliac, never been treated,” his father explained.
“Which is what we were after, because as documentation states that they are cheaper than chimpanzees, you know. You treat a chimp once, you can follow these children throughout their lives. And that’s what was going on.
“And this was going on from the ’70s. Colin was born in 1982. Yet they still infected him. How do you justify that?”
His mother said that they trusted the doctors at the time and never questioned their son’s treatment. “Just when we think back – at the time no, we didn’t. But when we think back, it was just blood tests. Blood tests, blood tests, blood tests.”
Hate campaign
The threat of HIV and AIDs was only just emerging. And this ignorance drove a hate-fuelled campaign against all those impacted.
This stigma forced Colin and Jan to move home and be shunned by some of their own community. All while still caring for their dying son.
“It became public when he needed to start school, for nursery, and all the parents protested and said: ‘We’re not having an AIDS kid in this school’, because we’ve been known as the AIDS family. We had AIDS that were [written] on the house and you’re not talking little.
“Well, it was like six-foot letters ‘AIDS DEAD’, we had crosses scraped into the door. The phone calls in the middle of the night were not very nice. They were the worst.”
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As Colin’s condition deteriorated his parents decided to bring him home for what would be his last Christmas with the family. It was against the wishes of Prof Bloom.
Jan and Colin were told haemophiliacs with AIDS should die in hospital and be cremated quickly. But the family ignored the hospital.
“And you know what,” Jan says. “He asked for a bike. And we actually got him a bike. He never rode it, obviously because he was too ill. But he wanted a bike. And I’m not going to not get him a bike. Because they all have bikes. But Colin never, never even sat on one.”
Colin Smith spent his last Christmas at home, against the wishes of Professor Bloom
That difficult decision to remove Colin from hospital to spend his last days with his family at home proved to be the right one.
“He was on my lap and he just got up to you, didn’t he?” Jan says looking at her husband. “He said: ‘I can’t see, daddy. I can’t see’. And then he just lay back. My hand was on his chest.
“And, you know, for a mother to actually feel the rise and fall of his chest. Waiting for it to stop. Because that’s what I was doing.
“I was waiting for it to stop. And then it stopped. And I just said: ‘I think he’s gone’. And I remember shaking him a little bit, but he’d gone.”
Jan and Colin Smith speaking to Sky News
‘I want my son to have his name back’
On Monday, Sir Brian Langstaff will deliver the long-awaited report into the infected blood scandal.
It has taken campaigners like Jan and Colin decades to achieve this. They are clear on what this report must say and how the government must respond.
Colin senior lives with the guilt of not protecting his son. He wants accountability.
“I want justice to be served properly not hypothetically. Let’s see the people who did this, hopefully criminal charges. It is manslaughter at least. I gave my son over to his killers, you know, and I can’t get to grips with that,” he says.
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Blood scandal ‘the worst thing’
For Jan, it will be recognition for a lifetime of heartbreak and grieving.
“I want people to recognise my son. And I want to be able to go to the cemetery and say, we’ve done it. And you’ve done it. That’s what I want. And I want an apology.
“People say it’s the money, it’s not the money. And I can’t get that through to people. It’s not the money. I want recognition.
“I want my son to have his name back. His name is Colin John Smith. And that’s what I want people to remember.”
Sky News will have full coverage of the infected blood report on TV, online and on the Sky News app on Monday.
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