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.
After a tricky few weeks for the government, in which backbenchers overturned plans to cut back welfare spending, now a heavy hand to get the party into line.
Three newly-elected MPs, Neil Duncan-Jordan, MP for Poole, Brian Leishman, MP for the new Alloa and Grangemouth constituency, and Chris Hinchcliff, for North East Herefordshire, have all had the whip suspended.
Rachael Maskell, MP for York Central, who was first elected a decade ago, is the fourth.
They will all sit as independent MPs and will not be allowed to stand for Labour at the next election, unless readmitted. All appear to be surprised – and upset.
Three more have lost plum roles as trade enjoys – Dr Rosena Allin-Khan, Bell Ribeiro-Addy and Mohammed Yasin, all on the left of the party.
All were active in the rebellion against the government’s welfare reforms, and voted against the changes even after a series of U-turns – but were among 47 Labour MPs who did so.
When MPs were told after the welfare vote that Number 10 was “fully committed to engaging with parliamentarians”, this was not what they were expecting.
We’re told the reasons for these particular suspensions go wider – over “persistent breaches of party discipline” – although most are not high profile.
In the scheme of things, Jeremy Corbyn and John McDonnell rebelled against the Labour whip hundreds of times under New Labour, without being suspended.
But these MPs’ pointed criticism of the Starmer strategy has clearly hit a nerve.
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7:02
Suspended MP: ‘There are lines I will not cross’
Maskell – who was referred to, jokingly, in the House of Commons earlier this month by Tory MP Danny Kruger as “the real prime minister” – led the rebellion against cuts to winter fuel allowance which triggered a U-turn which she said would still leave pensioners in fuel poverty.
There was an attack on the government’s values. Duncan-Jordan, a trade unionist who won the Poole seat by just 18 votes, led the welfare rebellion, telling Sky News the proposed cutbacks were “not a very Labour thing to do”.
Hinchliff, who has also opposed the government’s housebuilding strategy and plans to expand Luton airport,had told his local paper he was willing to lose the whip over welfare cuts if necessary. He also has a marginal seat, won by fewer than 2,000 votes.
Leishman, a former pro golfer, has also been vocal about government plans to close the refinery in his Grangemouth constituency after promising to try and make it viable. They are MPs who the leadership fear are going for broke – and that’s concerning as more tough decisions on spending are likely to come.
But after a poorly-handled welfare vote, in which MPs seemed to be in the driving seat forcing changes, will this instil a sense of discipline over the summer break?
While some MPs will see this as a deterrent to rebellion, for those whose chances of re-election are small, it may continue to be seen as a price worth paying.
To other Labour MPs, the move is confusing and may be counter-productive. One Labour MP on the left told me: “So, we’re suspending people for winning an argument with the government?”
Another, in the centre, feared it looked divisive, saying: “We need to go into the summer focused on the opposition – not involved in our melodramas.”
Number 10 wants to show rebelling comes at a price – but many Labour MPs with concerns about their political direction will want to know the prime minister is planning to listen to concerns before it gets to that point.
An Afghan interpreter who worked with the British military has told Sky News he feels “betrayed by the British government” after a massive data breach saw his personal details revealed.
Ali, whose name has been changed to protect his identity, had long suspected his details had been shared with the Taliban – but found out just yesterday that he was a victim of the breach three years ago.
He is now even more fearful for the lives of family members still in Afghanistan, who are already in hiding from the Taliban.
Ali worked alongside British soldiers in Helmand Province to help them speak with Afghan people. His job also involved listening in on Taliban radio communications and translating them for the British forces.
“The Taliban called us the British eyes,” he told Sky News. “Because they think if we are not on the ground with them, the British force cannot do anything.
“They know that you’re listening to their chatting and the British forces are acting according to our translation. We were always the first target and our job was always full of risk.”
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2:51
Here’s what the public couldn’t know until now.
After the Taliban seized power in Afghanistan in 2021, Ali – who had already suffered injuries after the Taliban targeted him with a car bomb – was brought to the UK through the British government’s Afghan Resettlement Programme (ARP) for his own protection.
Once in the UK, he began to suspect his data had been leaked after his father “died because the Taliban took him into custody and beat him”.
Ali contacted the Ministry of Defence to raise concerns over his personal information last year, and stated in an email that he was “terrified”, adding: “I beg of you, do not pass this information to anyone.”
“They just ignored what I told them and they never replied,” he said.
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1:59
Afghans being relocated after data breach
‘The Taliban want me’
Following confirmation that the data breach did take place, Ali is even more scared for the lives of his family members who have already been in hiding from the Taliban for around five months.
“I’m feeling terrible and frustrated,” he said. “My family’s details have been shared with the Taliban intelligence forces and now they are looking for them.
“Every day, every single minute, my family’s waiting for their death, because if anyone comes to knock the door, they think that that is the Taliban.”
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Ali has twice applied for his family to be relocated to the UK but both applications have been rejected. He is now renewing his call for the British government to move his loved ones.
“I have carried the body of the British soldier,” he said. “I feel betrayed by the British government. They should relocate my family to a safe place.”
Ali has decided he will return to his homeland to help his family if they are not granted legal passage to the UK.
“If we don’t win [the case], I have decided I want to go back to Afghanistan and finish this,” he said. “The Taliban want me. If the British government can’t save my family, then I have this one responsibility to go and save them.
“I don’t want my family being killed for something they didn’t do.”
Sky News has contacted the Ministry of Defence for comment.
Temperatures are set to hit 30C in some parts of the UK this week.
Highs of 28C can be expected on Thursday before temperatures are forecast to peak at 30C in London on Friday, Met Office meteorologist Jonathan Vautrey said.
Other areas in southeast England will push towards the high 20s on Friday, where the average temperature in July is around 23C.
“We’re starting to see south-westerly winds come in, that’s bringing in hotter and more humid conditions, particularly in southern areas, we are going to see temperatures climbing again,” Mr Vautrey said.
“Friday is looking to be the peak of the current hot spell. This heat is not going to be as widespread as what we’ve just come out of, areas to the north aren’t going to be seeing the same highs.”
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2:59
Much of England at risk of drought
But the weather is set to turn later in the week, with a chance of heavy rain and thunderstorms across the UK on the weekend, Mr Vautrey said.
Temperatures will start to slowly drop but are still expected to reach 28C or 29C on Saturday and 25C on Sunday.
A yellow thunderstorm warning has been issued for much of Northern Ireland from 11am until 8pm on Thursday, and this unsettled weather is forecast to spread across more of the UK.
Heavy showers and a few thunderstorms may cause some disruption, particularly to travel, with between 30mm and 40mm of rainfall over a few hours in Northern Ireland, the Met Office said.
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0:46
Is this the UK’s hottest year?
Meanwhile, Southern Water has become the latest company to bring in a hosepipe ban as England battles exceptionally dry weather.
Restrictions like watering gardens, filling paddling pools or washing cars would come in for households in Hampshire and the Isle of Wight from Monday, the company said.
It has been the driest start to the year since 1976 for England, causing many water companies to bring in hosepipe bans.
Rainfall across England was 20% less than the long-term average for June, the Environment Agency said. This June was the hottest on record for the country.