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.
Hayat Tahrir al Sham (HTS) went from a jihadist movement once aligned to al Qaeda to forming the official government of Syria.
It was a monumental transformation for them, their country and the wider Middle East.
But potentially too for British people who went to Syria– and who were stripped of their citizenship as a result, on the grounds of national security.
Tauqir Sharif, better known as Tox, went to Syria in 2012 as an aid worker. He was accused of being part of a group affiliated with al Qaeda, which he denies, and the then-home secretary Amber Rudd deprived him of his British citizenship in 2017.
“As of now, I am deprived of my UK citizenship but I’m not a convicted terrorist – and the reason for that is because we refused, we boycotted, the SIAC [Special Immigration Appeals Commission] secret courts, which don’t allow you to see any of the evidence presented against you,” he said.
“And one of the things that I always called for was, look, put me in front of a jury, let’s have an open hearing.”
Image: Tox went to Syria in 2012
HTS is still a proscribed terrorist organisation but the British government has now established relations with it.
Foreign Secretary David Lammy travelled to Damascus to meet the jihadist-turned-Syrian interim president – the man who swapped his nom de guerre of al Jolani for Ahmed al Sharaa.
Image: David Lammy shakes hands with Ahmed al Sharaa in Damascus. Pic: X / @DavidLammy
If the UK government takes HTS off the terror list, what does that mean for those who lost their citizenship after being accused of being part of it?
People who joined HTS are only a subset among the scores of people who have had their citizenship revoked – a tool the UK government has been quick to use.
According to a report by the Parliamentary Joint Human Rights Committee, the UK “uses deprivation of citizenship orders more than almost any country in the world”.
The peak of that was in 2017, and mainly in relation to Syria – especially in the case of people joining Islamic State, perhaps most famously Shamima Begum.
Image: Shamima Begum was stripped of her British citizenship on national security grounds
And because people cannot be made entirely stateless, and need to have a second nationality, or be potentially eligible for one, there are worries of racism in who the orders apply to.
Countries like Pakistan and Bangladesh offer dual nationality, whereas other nations do not. In 2022, the Institute of Race Relations said “the vast majority of those deprived are Muslim men with South Asian or Middle Eastern/North African heritage”.
Legal grey areas
Sky News submitted Freedom of Information requests to the Home Office asking for a breakdown of second nationalities of those deprived of citizenship, but was refused twice on national security grounds.
The independent reviewer of terrorism legislation, Jonathan Hall KC, told Sky News there are issues around transparency.
“I do think there is a problem when you have people whose relationship with the country that they’re left with is really technical and they may never have realised that they had that citizenship before and may never gone to that country,” he said.
“Me and my predecessors have all said, owing to how frequently this power is used, it should be something that the independent reviewer should have the power to review. I asked, my predecessor asked, we’ve both been told no, so I agree there’s a lack of transparency.”
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“We can’t sort of go through previous cases nitpicking through it, wasting time and money to bring it up to date,” he added.
“We can’t be naive because the intent to go out, the decision to go in itself is a huge decision for them. So it shows commitment when they’re there, they then, if they take an active participation in the organisations that they’ve been accused of joining, again, that involves training and perseverance and dedication to the cause.”
But those born and raised in Britain, who joined the same cause, and lost their citizenship as a result, might reasonably ask why that should remain the case.
Criminals face being banned from pubs, sports grounds and concerts under new government plans to give judges powers to pass tougher community sentences.
The new measures, which would apply to people in England and Wales, “should remind all offenders that, under this government, crime does not pay”, Justice Secretary Shabana Mahmood said.
Offenders’ freedom could also be curtailed with limits on driving, travel bans and restriction zones confining them to specific areas, the government said.
Similar measures could also apply to prisoners let out on licence, while drug testing would be expanded to include all those released, rather than just those with a history of substance misuse.
While judges are currently able to impose limited bans for specific crimes, such as football bans for crimes committed inside a stadium on match day, the new measures would allow for such bans to be handed down for any offence.
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12:16
Inside one of Britain’s most overcrowded prisons
The justice secretary said: “When criminals break society’s rules, they must be punished.
“Those serving their sentences in the community must have their freedom restricted there too.
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“These new punishments should remind all offenders that, under this government, crime does not pay.
“Rightly, the public expect the government to do everything in its power to keep Britain safe, and that’s what we’re doing.”
The proposals are part of the Labour government’s efforts to tackle overcrowding in prisons.
Back in June, it emerged that prisoners were to be transferred to lower security jails in an effort to ease overcrowding, as part of a new measure quietly unveiled by the government.
Sky News reported earlier this month how the prison system was close to collapse on a number of occasions between autumn 2023 and summer 2024, according to an independent review by former chief inspector of prisons, Dame Anne Owers.
The report said there was a systemic problem which has led to recurring prison capacity crises over the last 18 years.
Protesters have gathered across the country as groups demonstrated against asylum seeker housing and were met by anti-racism campaigners.
Demonstrations under the Abolish Asylum System slogan were held in England, Scotland and Wales, including in Bristol, Exeter, Tamworth, Cannock, Aberdeen, Mold, Perth, Nuneaton, Liverpool, Wakefield, Newcastle, Horley and Canary Wharf.
Counter-protests were also organised by campaign group Stand Up to Racism.
Image: Police officers scuffle with demonstrators during protests at Castle Park in Bristol. Pic: PA
In Bristol, mounted police separated the two groups in the Castle Park, with officers scuffling with protesters.
Police kept around 200 anti-immigration protesters draped in English flags away from roughly 50 Stand Up to Racism protesters in Horley, Surrey.
Image: People take part in a protest outside the Sheraton Four Points Hotel in Horley, Surrey. Pic: PA
One man, wearing a West Ham United football shirt, was held by police as he yelled: “You’re not welcome here, you’re not welcome here, you’re not welcome here” at anti-racism protesters.
Anti-immigration protesters also chanted: “Tommy, Tommy, Tommy, Tommy Robinson” in support of the far-right activist, whose real name is Stephen Yaxley-Lennon.
Image: A confrontation between a protester and a counter-protester outside the Sheraton Four Points Hotel in Horley, Surrey. Pic: PA
The anti-racism protesters chanted “say it loud, say it clear, refugees are welcome here” and held signs calling for solidarity and to “stop deportations”.
The Stand Up to Racism protesters were shepherded into a smaller area as they continued to chant: “No hate, no fear, refugees are welcome here”, which was met with “No they’re f****** not” from the other side of the street.
Image: People inside the hotel look at protesters outside the Radisson Hotel in Perth. Pic: PA
In Perth, protesters gathered outside the Radisson Hotel.
The anti-migration protesters held up signs with slogans such as “Perth is full – empty the hotels” and “get them out”.
Image: People take part in a counter-protest outside the Radisson Hotel in Perth. Pic: PA
Stand Up to Racism Scotland said it had achieved “victory” in Perth, with more than 200 gathering to oppose the Abolish Asylum System demonstration.
In Liverpool, a dispersal order was issued to try and contain the protests.
Saturday’s events come amid continued tension around the use of the hotels for asylum seekers.
Regular protests had been held outside the Bell Hotel in Epping, Essex, which started after an asylum seeker housed there was charged with sexually assaulting a 14-year-old girl on 10 July.
Hadush Gerberslasie Kebatu, 38, was charged with trying to kiss a teenage girl and denies the allegations. He is due to stand trial later this month.