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.
A long-awaited definition of Islamophobia is expected within weeks – and a former faith minister is urging the government to adopt it in full.
It is expected that the government will move away from the word “Islamophobia”, instead replacing it with “anti-Muslim hostility”.
But Lord Khan, who oversaw the start of the review into the definition, told Sky News the government must adopt the full new definition to tackle hate against Muslims.
Image: Lord Khan. Pic: PA
The Labour peer, who was faith minister until the September reshuffle, told Sky News: “I hope it’s a clear definition which reflects the terms of reference which protects people, and it’s clear.
“There’s so many definitions out there, this is an opportunity to address the big problem in our communities.
“I would request and urge the government to adopt the definition which fits within the terms of reference on what we wanted to do when we embarked on the process.
“It’s a strong message to our communities that the work that should be done isn’t being done – these are lived experiences and I am one of those people who has suffered.”
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Image: There was a suspected arson attack at a mosque in East Sussex earlier this month. Pic: Eddie Mitchell
Chaired by former Conservative minister Dominic Grieve, an independent working group has been looking at whether to produce a new definition of Islamophobia since February as part of a government bid to tackle the rise in hate crimes towards British Muslims.
Its aim was to “define unacceptable treatment, prejudice, discrimination and hate targeting Muslims or anyone who is perceived to be Muslim”.
From the beginning, ministers have insisted that any new definition would not infringe on freedom of speech, that it would protect the right to criticise, express dislike of, or insult religions and it would not pave the way for blasphemy laws to pass “through the back door”.
In 2021, Labour adopted a working definition of Islamophobia from a cross-party group supported by Wes Streeting, which said: “Islamophobia is rooted in racism and is a type of racism that targets expressions of Muslimness or perceived Muslimness.”
This old definition has formed the basis of the Conservatives’ concern with the government’s policy on this new one.
Tory shadow equalities minister Claire Coutinho told Sky News: “I think we all need to be equal in the law and there is already protection in the law – if you are a victim of violence or harassment based on your religion – those protections are already in place.
“What I deeply worry about is putting one group on a pedestal and giving them special protections because that will only breed resentment.”
When pressed on why other protected groups should have a definition, she said: “With the antisemitism definition, there was an international consensus and it was combating a specific thing, which was Holocaust denial.
“If you look at this definition, it’s based on an earlier version and one of the things it said in 2018 was that even talking about the grooming gangs was a form of anti-Muslim hatred.”
Image: Claire Coutinho. Pic: PA
British Muslims say they still face discrimination – and without a specific definition of Islamophobia, crimes can often go underreported. According to multiple monitoring groups, hate crimes have gone up significantly, with Home Office data showing a surge of 20% last year, making Muslims the target in nearly half of religion-based offences.
However, policy groups say the result of adopting a definition could be a “fundamental social and structural change” by the back door, without democratic consent.
The Policy Exchange thinktank claimed that if the government adopts a fixed definition, activists will use it to challenge counter-terrorism laws and undermine the Prevent programme, which aims to steer people away from extremism.
Ministers are set to decide in the coming weeks on what they will adopt in the report and whether it will be published, with Communities Secretary Steve Reed formally making the announcement when that decision is made.
A Ministry of Housing, Communities and Local Government spokesperson said: “We do not comment on leaks. The department is carefully considering the independent Working Group’s advice on a definition of anti-Muslim hatred/Islamophobia, and no government decisions have been made.
“We will always defend freedom of speech, including fiercely protecting the right to criticise, express dislike of, or insult religions and the beliefs and practices of those who follow them. This will remain at the front of our minds as we review the definition.”
Cows bred to produce less methane in their burps could prove to be an important ally in the fight against climate change, scientists have told Sky News.
A groundbreaking breeding programme in Scotland is proving so successful that the amount of the greenhouse gas produced by cattle when they belch or break wind could fall by 40% in just 20 years.
Cows and other farm animals produce at least 12% of global methane emissions, according to the Food and Agriculture Organisation of the United Nations.
But reducing levels could have a significant impact on global warming.
The gas traps 80 times more heat in the atmosphere than carbon dioxide in the first two decades after it’s released. But it breaks down after only 12 years – so reducing emissions would have rapid results.
Professor Mike Coffey, from Scotland’s Rural College, said calves born in the Cool Cows breeding programme produce 2% less methane than their parents.
“It’s permanent and cumulative. So once you’ve got an animal that produces less methane, she produces less for life,” he explained.
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“When you mate her to a lower methane-producing bull her offspring produce even less than she did.
“And you just keep going on and on. Over 20 years, you can reduce it by 40%.”
Methane is produced from cows, sheep and other ruminant animals when microbes in their guts digest grass and other feed.
The amount of the gas released by animals varies, partly because of the number and type of bugs in their stomach. And that’s influenced by inherited genetic factors in the cattle.
A new DNA test made by the company Semex can predict which animals will produce less methane, allowing scientists to match up bulls and cows for the breeding programme.
IVF techniques are then used to produce five or six calves in surrogate mothers each year, rather than the one that would normally be possible.
It means scientists can pick the best animal to breed from, leading to more rapid methane reductions without any genetic modification.
‘Entirely vegan world not feasible’
Agriculture currently accounts for 10% of the UK’s greenhouse gas emissions, with the country’s nine million cows and calves a significant contributor.
The National Farmers’ Union has set a target of reducing greenhouse gas emissions to net zero by 2040.
Food sustainability experts say breeding cattle that produce less methane is a significant advance, but not enough.
Emma Garnett, from the University of Oxford, said livestock still produce large amounts of manure that also releases greenhouse gases.
“Yes, let’s make things more efficient if we can, because I don’t think an entirely vegan world is a feasible,” she said.
“But it must not be used as a smoke screen for not shifting to more plant-based diets. The most effective way to reduce methane from cows is to farm fewer cows.”
Beef consumption has already fallen by 62% since 1980, according to recent government figures.
Much of that has been because of concerns over health and animal welfare, but in recent years the climate impacts of cattle farming have become more widely known.
However, cheese consumption is increasing.
Professor Coffey said: “If you choose to eat meat or dairy, we are trying to produce it with lower impact.
“Just like if you chose to drive a car, you can choose to drive a car that has less emissions or you can choose to go on the bus.
“What we are doing here is providing consumers a choice and farmers the tools to enable that choice to be made.”
Yellow weather warnings for strong winds and heavy rain have been issued overnight – as Storm Benjamin sweeps through the UK.
The Met Office has issued four alerts – and has warned flooding, power cuts and travel disruption are possible.
Forecasters say damage to buildings is possible, with “a small chance of injuries and danger to life being caused by large waves” as the storm moves from the English Channel to the North Sea.
Britons who live in coastal areas are being urged to check their properties and “consider preparing a flood plan”.
Image: The morning commute, for some, may be tricky. Filepic: PA
A yellow warning for rain covering most of southern England, the East Midlands, parts of Wales and Yorkshire came into force at midnight and will expire at 6pm tonight.
Up to 30mm of rain is expected quite widely – rising to 50mm in some places, and even 90mm in isolated areas.
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An additional alert covering East Anglia and Lincolnshire expires at 9pm.
Large parts of southeast England are also under a yellow warning for wind from 3am until midnight – with gusts of 50mph to 60mph widely possible, potentially rising to 70mph near coasts.
A final warning for wind applies in Cornwall, Devon and the west coast of Wales from 6am until 3pm.
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Is UK ready for more extreme weather?
Chief meteorologist Rebekah Hicks said: “It is worth noting that there is a greater than usual uncertainty surrounding the track and intensity of this low pressure system.
“The public should stay up to date with the latest forecasts and warnings as the situation evolves, with adjustments to the forecasts likely at short notice.”
Storm Benjamin was named by Meteo France, the French national meteorological service.