A national shortage of epilepsy medication is putting patients’ safety at risk, consultants have said.
Medical professionals are becoming genuinely concerned as ever more frequent supply issues continue to bite tens of thousands of sufferers.
According to the Epilepsy Society charity, over 600,000 people in the UK have the condition, or about one in every 100 people.
Among them is Charlotte Kelly, a mother of two living in London who has had epilepsy for over 20 years. She must take two tablets a day to manage her condition but issues with supply have forced her to start rationing her medication.
Speaking to Sky News, Ms Kelly told us of the fear surrounding the restricted access to the medicate she needs to survive.
“I’m scared. If I’m truly honest, I’m scared knowing that I might not get any medication for a few weeks, or a couple of months, I just don’t know when.
“It’s scary to know that I have to worry about getting hold of medication. I do believe that something needs to happen very quickly because even if it’s pre-ordered there’s no guarantee you’re going to get it.
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“The anxiety of worrying about if you’re going to get your medication builds up and the worry alone can cause seizures.”
It’s added worry knowing her chances of having seizures increases her reliance on her 14-year-old daughter who often has to make the 999 calls to get help for her mum.
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She was due to get a renewed supply in December to get her through the next two months.
But there’s no guarantee of when any of it will next be in stock.
“I get very, very frustrated. There’s times when I’ve had to call five, six different pharmacies and the more you’re calling, and you’re not hearing what you need to hear.
“You’re getting more and more frustrated and then you’re getting upset and it’s like where do we stand? Epilepsy is a very, very, very common condition.
“Over 600,000 people in the UK alone, have epilepsy. And when but yet we feel like we are just a hidden condition.
“People just don’t understand that if I don’t have my medication I could have multiple seizures, and that could lead to hospitalisation, and at worst case, death.”
What is epilepsy?
Epilepsy is a condition that affects the brain and causes frequent seizures.
It can start at any age, but usually starts in childhood or in people over 60.
Seizures are bursts of electrical activity in the brain that temporarily affect how it works. They can cause a wide range of symptoms.
Symptoms include:
• uncontrollable jerking and shaking, known as a “fit”
• losing awareness
• becoming stiff
• strange sensations, such as a “rising” feeling in the belly, unusual smells or tastes, and a tingling feeling in your limbs
• collapsing
Seizures can be triggered in numerous ways including flashing lights, sleep deprivation, misuse of drugs or missing medications.
The condition affects more than 600,000 people in the UK.
Kay Dhillon, a pharmacist in west London, showed me the near-empty cubby hole and cupboard which is usually full of epilepsy medication as she told Sky News she started noticing products were flagging and being out of stock three weeks ago.
She describes it now as being at crisis point.
Image: London pharmacist Kay Dhillon
“It is a crisis. You don’t know how many epilepsy fits or tablets the person can have or how severe their epilepsy is. Because obviously, they’ve been taking it every single day for so many years and it just stops one day, or even if they miss a dose, it’s a big deal.”
Ms Dhillon says she has been given no indication of when the drugs will be back in stock.
She says she’s been managing so far by helping patients access resources shared between four pharmacy branches but says everyone’s supplies are running low.
“It seems like it’s a manufacturing issue. Obviously, patients are asking – how can you not know when it will be back in stock?
“It’s a shame because patients rely on you for this and they shouldn’t have to go looking around for their daily medication.”
Speaking to Sky News, Professor Ley Sander, director of medical services at the Epilepsy Society, says the supply concern is not just on the minds of patients but those in the industry too.
“It might be that we need a strategic reserve for storage of drugs, we might have to bring drugs over from other parts of the world to avoid this from recurring.
“We’re not at that point yet, but this is an urgent issue.”
In a statement provided to Sky News, a Department of Health and Social Care spokesperson said: “We understand how frustrating and distressing the possibility of medication shortages can be and are aware of supply issues with the epilepsy medicine carbamazepine. These have been communicated to the NHS, with information and advice provided on how to manage patients affected by these issues.
“The department is working closely with suppliers, NHS England, the Medicines and Healthcare products Regulatory Agency, the devolved governments and other stakeholders to ensure patients continue to have access to the treatments they need. Through this work, problems with carbamazepine should be resolved by early February.”
It is those like Charlotte who are left bearing the brunt till then.
On Thursday night I was told that Chancellor Rachel Reeves and Prime Minister Sir Keir Starmer were now not going to raise income tax, having had anonymous briefings for weeks that a manifesto-breaking tax rise was coming, culminating in the speech in Downing Street by the chancellor last week alluding to that.
I had also heard the prime minister was going to make a speech next week to the same effect.
The U-turn – first broken in the Financial Times – was not something the government wanted to leak, and there is anger in Downing Street.
I was told late last night by a source that the decision had been taken to back off income tax rises.
There is obviously some consternation, to say the least, that ministers, the party, the public have been marched up the hill, only to be marched back down again. It all adds to a sense of chaos and a government out of control. So what on earth is going on?
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2:14
‘Bombshell’ over income tax
Let’s first do the economics of it. I was told this morning by Treasury sources that the fiscal forecasts from the Office of Budget Responsibility are stronger than expected.
There had been expectations of a £30bn-£40bn black hole in the public finances.
But I’m told today that black hole is actually closer to £20bn: the chancellor also wants headroom of perhaps up to £15bn, but I’m told the change in forecasts has changed the calculation. I’m told wage growth has been stronger which has helped tax receipts and improved forecasts.
So, where does that leave the government? Treasury figures tell me that the change in forecasts mean the manifesto-busting income tax hike is now not necessary.
I don’t need to spell out the jeopardy for such a move: Rachel Reeves was poised to be the first chancellor in 50 years to raise the basic rate of income tax and break the core manifesto pledge that Labour made to voters last year.
It doesn’t mean taxes are not going up. The government is set to freeze tax thresholds for another two years from 2028. That will raise around £8bn as millions of workers are dragged into higher tax bands and end up paying more tax.
There will also be tax raising around pensions and salary sacrifice schemes and on electric vehicles, as well as other measures, as the chancellor casts around for £20bn.
But what about the politics? Well, one government figure today insists that the decision to drop the income tax plan is nothing to do with the self-inflicted leadership crisis at No 10 after anonymous briefings designed to see off any potential post-budget coup against the prime minister spectacularly backfired. The changed forecasts, I’m told, came in last week.
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But of course there’s tonnes of politics in this. The talk of higher wage growth perhaps offsetting some of the productivity downgrades was being flagged a couple of weeks back, before the chancellor made her speech.
It’s extremely unusual for a chancellor to pitch-roll their budget. But Reeves did it for a reason.
That was laying the ground for a massive budget that would bring manifesto-breaking tax rises.
She told us of the difficult environment, ruled out more borrowing or spending cuts before telling us “everyone must play their part”. She repeatedly refused to stick to manifesto promises on tax. It doesn’t get much more stark than that.
That the government has U-turned on that decision is about far more than just the fiscal framework.
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3:26
Wes Streeting: Faithful or traitor? Beth Rigby’s take
With trust so low in the government, there were serious worries – and warnings – from the party that such a big manifesto break might be something from which the PM and the chancellor wouldn’t recover.
One senior party figure that thinks there could be a leadership challenge after the May elections told me this week that manifesto-breaking tax rises would only make that more likely because Labour would “need a clean skin” to try and rebuild with the public if Starmer broke his promises in that way.
Lucy Powell, the deputy Labour leader, fired a warning shot last week when she said the party should stick to the manifesto and not raise tax: “We should be following through on our manifesto, of course. There’s no question about that,” she told Matt Chorley on BBC Radio 5 Live.
“Trust in politics is a key part of that because if we’re to take the country with us then they’ve got to trust us and that’s really important too.”
The party will no doubt feel relief today that the chancellor is not going to break the manifesto.
It would have only made things a whole lot worse for a government that is in real trouble.
But the shambles of this week is staggering. From the self-inflicted leadership crisis to leaks over a massive budget U-turn, it all lends to the sense that this is a No 10 out of control, lurching from one mess to another. Strap in.
A man has been given a 13-month prison sentence for stealing Banksy’s famous Girl With Balloon painting from a London gallery.
Larry Fraser, 49, of Beckton, east London, was sentenced on Friday after pleading guilty to one count of non-residential burglary at Kingston Crown Court on 9 October.
The painting, one of the street artist‘s most famous, was stolen from a gallery in New Cavendish Street in London at around 11pm on 8 September last year.
Image: The recovered painting back in the gallery. Pic: Metropolitan Police
Fraser used a hammer to smash his way through a glass entrance door at the Grove Gallery before stealing the artwork, which was valued at £270,000.
He concealed his identity with a mask, hooded jacket and gloves, but the Metropolitan Police’s Flying Squad was able to identify him and track him to a location streets away.
He was also caught on CCTV loading the artwork into a van before fleeing the scene.
A second man, 54-year-old James Love, was accused of being the getaway driver in the burglary, but cleared of stealing the print.
Image: Larry Fraser. Pic: Metropolitan Police
Image: Damage to the Grove Gallery after the theft. Pic: Metropolitan Police
Fraser was arrested at his home address on 10 September, within 48 hours of the burglary, and charged the next day.
Officers were able to recover the artwork after executing a warrant on the Isle of Dogs. It has now been returned to the gallery.
Fraser pleaded to the court that he was struggling with a historic drug debt and agreed to steal the work “under a degree of pressure and fear”.
He said he did not know what he would be stealing, nor its value, until the day of the offence.
Image: Fraser was caught on CCTV taking the painting away from the gallery. Pic: Metropolitan Police
Jeffrey Israel, defending, said Fraser lived with his mother as her principal carer, and had only managed to “break his cycle of drug addiction” after his last prison sentence.
He added that it “would take a bold advocate” to suggest that the value of the print had increased by the burglary, but insisted “that is probably the reality”.
Judge Anne Brown was unmoved, however, and said the offence was “simply too serious” for a suspended sentence.
“This is a brazen and serious non-domestic burglary,” she said.
“Whilst you did not know the precise value of the print, you obviously understood it to be very valuable.”
She added: “Whilst I am sure there was a high degree of planning, this was not your plan.”
However, Fraser may be eligible for immediate release due to time spent on electronic curfew.
Detective Chief Inspector Scott Mather, who led the Met’s investigation, said: “Banksy’s Girl With Balloon is known across the world – and we reacted immediately to not just bring Fraser to justice but also reunite the artwork with the gallery.
“The speed at which this took place is a testament to the tireless work of the flying squad officers – in total it took just four days for normality to be restored.”
The 2004 artwork was part of a £1.5m collection of 13 Banksy pieces at the gallery.
Gallery manager, Lindor Mehmetaj, said it was “remarkable” for the piece to have been recovered after the theft.
The 29-year-old said: “I was completely, completely shocked, but in a very, very positive way when the Flying Squad showed me the actual artwork.
“It’s very hard to put into words, the weight that comes off your shoulders.”
A former vet has admitted drugging and sexually assaulting two boys at a summer camp and child cruelty towards six other victims.
Jon Ruben, 76, of Nottinghamshire, admitted sexual assault of a child under 13, assault of a child under 13 by penetration, eight counts of child cruelty, three counts of making indecent images of children and four drugs charges.
Leicester Crown Court was told Ruben, who prosecutors said had run a holiday camp for at least 27 years, laced sweets with tranquilising drugs and attacked two children after asking youngsters to play “a sweet game”.
Ruben denied a charge of assault by penetration which prosecutors have been given two weeks to consider if they will proceed with.
Prosecutor Mary Prior KC said the charges related to a summer camp held at rented premises near a village in Leicestershire last summer.
The prosecutor told the court: “The defendant, for at least 27 years, has run a holiday camp.
“There is a long history of children feeling sick at the camp over many years.”
The rented premises, Stathern Lodge, were not connected to the camp itself, the court heard, and Ruben was in charge of youngsters there, Ms Prior said.
“He made the rules,” she added. “For many years he has played what he calls a sweet game with the children in which he goes into the bedrooms.
“The game is that each has to eat really sticky sweets as quickly as they can but they must chew them.
“Children have always felt ill the next day but he explained it as they were overwrought.”
Ruben was remanded in custody until a further hearing at the same court on 28 November.
Temporary Detective Chief Inspector Neil Holden said: “This has been a horrific, complex and emotional investigation involving multiple young, innocent, vulnerable victims and a man who committed the vilest crimes.
“Our focus today must of course remain on the young victims and with the support of partners and dedicated family liaison officers, we have and continue to support their welfare and to ensure their safeguarding going forward.”