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.
Metropolitan Police is to stop investigating “non-crime hate incidents” to “reduce ambiguity” after prosecutors dropped a case against Graham Linehan.
Linehan, 57, will face no further action after being arrested over his social media posts about transgender people.
The Father Ted and IT Crowd creator said his lawyers had been told the case wouldn’t proceed. The Crown Prosecution Service confirmed the move.
Linehan, 57, was arrestedon suspicion of inciting violence when he landed at Heathrow from his home in the US on 1 September.
The incident drew criticism of the police and government from some politicians and free-speech campaigners.
Met Policesaid today it would stop investigating “non-crime hate incidents” to “reduce ambiguity” and “provide clearer direction for officers”.
Posting on X, Linehan announced : “After a successful hearing to get my bail conditions lifted (one which the police officer in charge of the case didn’t even bother to attend) the Crown Prosecution Service has dropped the case.
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“With the aid of the Free Speech Union, I still aim to hold the police accountable for what is only the latest attempt to silence and suppress gender critical voices on behalf of dangerous and disturbed men.”
The union said it had hired a “top flight team of lawyers to sue the Met for wrongful arrest, among other things”.
“The police need to be taught a lesson that they cannot allow themselves to be continually manipulated by woke activists,” it added.
A Crown Prosecution Service spokesperson confirmed it had reviewed the case file and decided “no further action” would be taken.
Image: Linehan said he had to be taken to hospital on the day of his arrest. Pic: PA
In one of his posts, Linehan wrote: “If a trans-identified male is in a female-only space, he is committing a violent, abusive act. Make a scene, call the cops and if all else fails, punch him in the balls.”
Another was a photo of a trans-rights protest, with the comment “a photo you can smell”, and a follow-up post saying: “I hate them. Misogynists and homophobes. F*** em”.
A Met Police statement after the case was dropped acknowledged “concern” around Linehan’s arrest.
It added: “The commissioner has been clear he doesn’t believe officers should be policing toxic culture war debates, with current laws and rules on inciting violence online leaving them in an impossible position.
“As a result, the Met will no longer investigate non-crime hate incidents.
“We believe this will provide clearer direction for officers, reduce ambiguity and enable them to focus on matters that meet the threshold for criminal investigations.”
What is a non-crime hate incident?
A non-crime hate incident (NCHI) involves an act perceived to be motivated – wholly or partly – by hostility or prejudice towards someone over a particular characteristic, such as their race, disability, sexual orientation, religion or transgender identity.
They can often take the form of abusive or insulting social media activity which doesn’t meet the threshold for a crime. For example, there is no physical threat to someone, or an incitement to harm them.
For something to be a hate crime, it has to be an actual offence – such as an assault, vandalism, harassment, or threats – motivated by prejudice against someone with one of the characteristics listed above. The Home Office advises a “common sense” and proportionate approach to police recording an NCHI.
It says “even where the speech is potentially offensive, a person has the right to express personally held views in a lawful manner” – including through controversial humour and satire.
An NCHI should only be recorded against someone if it will mitigate a real risk of significant harm in the future, or of a criminal offence being committed.
Linehan said on his blog that he was arrested by five armed officers and had to go to A&E after his blood pressure reached “stroke territory” during his interrogation.
Police said the officers’ guns were never drawn and were only present as Linehan was detained by the aviation unit, which routinely carries firearms.
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JK Rowling, who’s regularly shared her views on women’s rights in relation to transgender rights, was among those who had criticised the arrest, calling it “utterly deplorable”.
Reform’s Nigel Farage, shadow justice secretary Robert Jenrick, and ex-foreign secretary Sir James Cleverly also hit out at the treatment of Linehan.
Maccabi Tel Aviv fans will not be able to buy tickets to their club’s match with Aston Villa next month, the Israeli club have said.
In a statement, they said: “The wellbeing and safety of our fans is paramount and from hard lessons learned, we have taken the decision to decline any allocation offered on behalf of away fans and our decision should be understood in that context.”
It comes after the UK government said it was exploring what “additional resources and support are required” to allow “all fans” to attend.
Supporters of the Israeli side had been told last week they would not be allowed to go to November’s game in Birmingham after a decision by Birmingham’s Safety Advisory Group (SAG).
The group – made up of local stakeholders, including representatives from the council, police and event organisers – said the decision was due to a high risk of violence based on “current intelligence and previous incidents”.
Maccabi Tel Aviv said the club believed “football should be about bringing people together not driving them apart” and that it had “been working tirelessly to stamp out racism within the more extreme elements of our fan base”.
However, it added: “Unfortnately those issues are not restricted to Israeli football, and they are problems the sport has been grappling worldwide including in the UK.”
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This breaking news story is being updated and more details will be published shortly.
The son of former England footballer Stuart Pearce has died in a crash, his family has said.
Harley Pearce, from Marlborough in Wiltshire, was driving a tractor near Witcombe, Gloucestershire, on Thursday, when he was involved in a collision, police said.
The 21-year-old farming worker died at the scene, on the A417 Old Birdlip Hill in Witcombe, around five miles from Gloucester.
No other vehicles were involved, Gloucestershire Constabulary said. Emergency services were called to the scene of the incident at about 2.30pm on October 16.
Image: Stuart Pearce at last year’s FA Cup Final at Wembley. Pic: PA
Harley Pearce was 21 and worked in farming, according to reports.
‘Our shining star’
In a tribute posted on Facebook, Harley sister, Chelsea Pearce, said the family was “truly shocked and utterly heartbroken at the loss of our cherished son and devoted brother, Harley”.
He was, the family said, was a soul “who left an unforgettable imprint on all who knew him”.
“He was a golden boy with an infectious smile, and this shocking tragedy will leave a huge hole in the hearts of those who were fortunate enough to have known him.”
He had “a quiet, understated strength and deep kindness”.
The family said they were “so proud of the young man he had become, exhibiting a wonderful work ethic and entrepreneurial spirit in the farming industry.
“He will always be our shining star. Rest in Peace, our beautiful son and brother. You will never, ever be forgotten.”
What have police said?
Harley ran his own company, Harley Pearce Agricultural Service, talkSPORT said.
Gloucestershire Constabulary said on Thursday: “The driver of the tractor, a man in his 20s and from Wiltshire, was pronounced dead at the scene.
“His next of kin are aware and being supported by specially trained officers.”
The force is appealing for any witnesses or anyone with dashcam footage to contact them.
‘Tragic news’
Harley’s father, Stuart Pearce, played 78 times for England and was part of the Three Lions squads which reached the semi-finals of the 1990 World Cup and Euro 96, the FA said on its website.
He was later the head coach of the England Under-21s.
During a long club career, he made more than 400 appearances for Nottingham Forest, many of them as captain, during a 12-year spell at the City Ground.
He later managed the club, as well as another former club, Manchester City.
Pearce currently works as a pundit on talkSPORT, which said on its website that Harley and Chelsea were the two children he had with his ex-wife Liz.
Presenter Jim White said during a broadcast on Monday that “everybody here on this show and at talkSPORT sends our heartfelt condolences to the family of Stuart Pearce after that tragic news we’ve just heard”.