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.
More on Nhs
Related Topics:
“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.
Advertisement
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.
Maria’s treatment by Greater Manchester Police (GMP) was so shocking the chief constable described it as “undefendable” and yet a year after a high-profile inquiry found she had been “unlawfully” arrested and strip-searched, Maria now has a criminal conviction for the crime the inquiry said she should never have been arrested for.
Warning: This story includes graphic descriptions of strip searches and references to domestic violence.
The Baird Inquiry – named after its lead Dame Vera Baird – into GMP, published a year ago, found that the force made numerous unlawful arrests and unlawful strip searches on vulnerable women. A year on, the review has led to major changes in police processes.
Strip searches for welfare purposes, where the person is deemed at risk of harming themselves, are banned, and the mayor’s office told Sky News only one woman was intimately strip-searched to look for a concealed item by GMP last year.
Women had previously told Sky News the practice was being used by police “as a power trip” or “for the police to get their kicks”.
However, several women who gave evidence to the Baird Inquiry have told Sky News they feel let down and are still fighting for accountability and to get their complaints through the bureaucracy of a painfully slow system.
The case of Maria (not her real name) perhaps best illustrates how despite an inquiry pointing out her “terrible treatment”, she continues to face the consequences of what the police did.
Image: ‘Maria’ said she was treated like a piece of meat by GMP
‘Treated like a piece of meat’
The story begins with an act of poor service. A victim of domestic violence, Maria went to the police to get keys off her arrested partner but was made to wait outside for five-and-a-half hours.
The Baird Inquiry said: “This domestic abuse victim, alone in a strange city, made 14 calls for police to help her.
“She was repeatedly told that someone would contact her, but nobody did. The pattern didn’t change, hour after hour, until eventually she rang, sobbing and angry.”
The police then arrested her for malicious communications, saying she’d sworn at staff on the phone.
Inside the police station, officers strip-searched her because they thought she was concealing a vape. Maria told Sky News she was “treated like a piece of meat”.
The Baird Inquiry says of the demeaning humiliation: “Maria describes being told to take all her clothes off and, when completely naked, to open the lips of her vagina so the police could see inside and to bend over and open her anal area similarly.”
Image: Chief Constable Stephen Watson said the actions towards Maria were ‘inexplicable’
After the inquiry found all this not only “terrible” but “unlawful”, Chief Constable Stephen Watson described the actions of his officers towards Maria as “an inexplicable and undefendable exercise of police power”.
He added: “We’ve done the wrong thing, in the wrong way and we’ve created harm where harm already existed.”
Despite all of this, the charges of malicious communication were not dropped. They hung over Maria since her arrest in May 2023. Then in March this year, magistrates convicted her of the offence, and she was fined.
Dame Vera’s report describes the arrest for malicious communications as “pointless”, “unlawful”, “not in the public interest” and questions whether the officer had taken “a dislike to Maria”. Yet, while Maria gained a criminal record, no officer has been disciplined over her treatment.
A GMP spokesperson said: “The court has tested the evidence for the matter that Maria was arrested for, and we note the outcome by the magistrate. We have a separate investigation into complaints made about the defendant’s arrest and her treatment whilst in police custody.”
The complaint was referred to the Independent Office for Police Conduct (IOPC) in August 2023 and Maria was told several months ago the report was completed, but she has not heard anything since.
Image: Dame Vera Baird’s report catalogues the ‘unlawful’ arrest and strip search of various individuals by GMP
‘There’s been no accountability’
Dame Vera’s report also catalogues the “unlawful” arrest and strip search of Dannika Stewart in October 2023 at the same police station. Dannika is still grinding through the police complaints service to get a formal acknowledgement of their failings.
She told Sky News: “Everyone involved in it is still in the same position. There’s been no accountability from the police. We’re still fighting the complaint system, we’re still trying to prove something which has already been proved by an independent inquiry.”
Image: Body cam footage of Dannika Stewart being arrested
Asked if anyone had been disciplined, Chief Constable Watson told Sky News: “There are ongoing investigations into individual failings, but for the most part the Baird review talked about systemic failings of leadership, it talked of failings in policy and failings of systems.
“In some cases, those people who may have misconducted themselves at the level of professional standards have retired. There are no criminal proceedings in respect of any individual.”
He added: “Every single element of the Baird inquiry has been taken on board – every single one of those recommendations has been implemented – we believe ourselves to be at the forefront of practice.”
‘It’s been three years’
Mark Dove who was also found by the inquiry to have been unlawfully arrested three times and twice unlawfully stripped-searched says he’s been in the complaints system for three years now.
He told Sky News: “There have been improvements in that I’m being informed more, but ultimately there’s no timeline. It’s been three years, and I have to keep pushing them. And I’ve not heard of anyone being suspended.”
Image: Mark Dove was found to have been unlawfully arrested three times and unlawfully strip-searched twice
Sophie (not her real name), a domestic violence victim who was also found by the review team to have been unlawfully arrested by GMP, told Sky News that although most of her complaints were eventually upheld they had originally been dismissed and no officer has faced any consequences.
She said: “They put on record that I’d accepted a caution when I hadn’t – and then tried to prosecute me. Why has no one been disciplined? These are people’s lives. I could have lost my job. Where is the accountability?”
Since the Baird Inquiry, every strip search by GMP is now reviewed by a compliance team. GMP also provides all female suspects in custody with dignity packs including sanitary products, and they work with the College of Policing to ensure all officers are trained to recognise and respond to the effects of domestic and sexual trauma on survivors.
Image: Kate Green, deputy mayor for Greater Manchester for policing and crime
The deputy mayor for Greater Manchester for policing and crime, Kate Green, says the lessons of the Baird Inquiry should reach all police forces.
She said: “I would strongly recommend that other forces, if they don’t already follow GMP’s practise in not conducting so-called welfare strip searches, similarly cease to carry out those searches. It’s very difficult to see how a traumatising search can be good for anybody’s welfare, either the officers or the detainees. We’ve managed to do that now for well over a year.”
Ms Green also suggests a national review of the police complaints system.
Deputy Chief Constable Terry Woods, of GMP, said: “Our reformed Professional Standards Directorate (PSD) has increased the quality of complaints handling and improved timeliness.
“Where officers have been found to breach our standards then we have not hesitated to remove them from GMP, with more than 100 officers being dismissed on the chief constable’s watch.
“Out of 14 complaints relating to Dame Vera’s report, four have been completed. Our PSD continues to review and investigate the other complaints.
“We’re committed to being held to account for our use of arrests and our performance in custody.
“By its nature, custody has – and always will be – a challenging environment.
“However, basic provisions and processes must always be met and, while we’re confident our progress is being recognised across policing, we stand ready to act on feedback.”
One child has died after a coach bringing children back from a school trip crashed and overturned near Minehead, Somerset, police have said.
A major incident was declared after the vehicle, which had 60-70 people on board, crashed on the A396 Cutcombe Hill, between Wheddon Cross and Timbercombe, shortly before 3pm on Thursday afternoon.
The coach was heading to Minehead Middle School at the time.
At a news conference on Thursday night, officials confirmed one child died at the scene.
A further 21 patients were taken to hospital, including two children who were transported via air ambulance. “Several” other people were treated at the scene, they added.
Image: A police officer near the scene of the coach crash in Somerset. Pic: PA
“This has been an incredibly challenging scene for all emergency services,” Chief Superintendent Mark Edgington said.
“Today’s events are truly tragic, we know the whole community and wider area will be utterly devastated to learn of this news.”
An investigation into what caused the crash will be carried out, he added.
Gavin Ellis, the chief fire officer for Devon and SomersetFire & Rescue Service, said the coach “overturned onto its roof and slid approximately 20ft down an embankment”.
He praised an off-duty firefighter who was travelling behind the vehicle for helping at the scene, before crews then arrived to carry out rescues “in extremely difficult circumstances”.
“I’m grateful for the tireless effort and actions of the crews in doing everything they could for those who were trapped and as quickly as safely as possible,” he said.
“I’m extremely proud of the efforts that my firefighters took today at this tragic event.”
Eight fire engines were sent to the scene, with two specialist rescue appliances and around 60 fire personnel, Mr Ellis said.
A total of 20 double-crewed ambulances, three air ambulances and two hazardous area response teams were also sent to the scene, a representative for the South Western Ambulance Service said.
Image: Pic: PA
Ch Supt Mark Edgington said: “Many passengers either sustained minor injuries or were physically unharmed and were transferred to a rest centre.
“Work to help them return to Minehead has been taking place throughout the evening.
“An investigation into the cause of this incident will be carried out.”
Minehead Middle School has pupils aged between nine and 14, and is five days away from the end of term.
‘I don’t have words,’ says local MP
Please use Chrome browser for a more accessible video player
1:40
‘From one mother to another, I feel your pain’
Rachel Gilmour, MP for Tiverton and Minehead, has said the road where the coach crashed is “very difficult to manoeuvre”.
Speaking to Sky News chief presenter Anna Botting, Ms Gilmour said she visited Minehead Middle School recently, where she “met the children and they were full of joy, enthusiasm and were very positive”.
“I know many of their parents,” she said. “I don’t have words.”
Describing the scene, Gilmour continued: “You have a very difficult crossing at Wheddon Cross, and as you come out to dip down into Timbercombe, the road is really windy and there are very steep dips on either side.
“If the coach, as the police are saying, went 20ft off the road, you are literally on a really, really steep bank.”
The MP, whose constituency is partly in Devon and partly in Somerset, said there is a “really, really close community”.
“We will pull together, but it would be crass of me to say to a parent who’s just lost their child that I could make things better, I can’t,” she said.
“All I can say is that from one mother to another, I feel your pain.”
Image: Cutcombe Hill near Minehead, where the accident took place. Pic: Google Maps
Sir Keir Starmer said in a post on X: “There are no adequate words to acknowledge the death of a child. All my thoughts are with their parents, family and friends, and all those affected.
“Thank you to the emergency workers who are responding at pace – I’m being kept up to date on this situation.”
Education Secretary Bridget Phillipson wrote: “It is heartbreaking to hear that a child has died and others are seriously injured following the incident in Minehead earlier today.
“My thoughts are with their friends and families, and all those affected by this tragic event.”
Sixteen and 17 year olds will be able to vote in all UK elections in the biggest reform to the electoral system since 1969.
The government said it will give young people the right to vote in the next general election, something Labour promised in its manifesto last summer.
They can already vote in Senedd elections in Wales and Holyrood elections in Scotland, but this will mean all 16 and 17 year olds across all four UK nations can vote in local, regional and general elections.
Up to 9.5 million more people will now be able to vote, the IPPR thinktank said. The latest figures show 48,208,507 people are registered to vote.
The last time the voting age was changed was in 1969 when it was reduced from 21 to 18.
The government has said the change will “boost democratic engagement in a changing world, and help to restore trust in UK democracy”.
More on Labour
Related Topics:
Image: Young people across the UK will be able to vote in all elections. File pic: iStock
Deputy Prime Minister Angela Rayner said: “For too long public trust in our democracy has been damaged and faith in our institutions has been allowed to decline.
“We are taking action to break down barriers to participation that will ensure more people have the opportunity to engage in UK democracy, supporting our Plan for Change, and delivering on our manifesto commitment to give 16 year olds the right to vote.
“We cannot take our democracy for granted, and by protecting our elections from abuse and boosting participation we will strengthen the foundations of our society for the future.”
Majority of Britons do not want to give young people a vote
A YouGov poll of 5,538 adults held in the hours after Thursday’s announcement found 57% of Britons think 16 and 17 year olds should not be allowed to vote, while a third (32%) say they should.
Anthony Wells, head of European political and social research at YouGov, said due to “raw numbers”, 16 and 17 year olds “probably won’t have much impact” as they only make up about 2.8% of the 16+ population.
If their turnout rate is similar to other young people, they will also be a “substantially lower proportion of the actual electorate”, he added.
They tend to vote more heavily for Labour and the Greens – less for the Tories – however, he added this could change if Labour is unpopular by the next election.
No consultation
Conservative shadow communities minister Paul Holmes accused Labour of having “rushed” the announcement out “in an attempt to avoid parliamentary scrutiny and without consultation”, calling it a “confusing message to young people”.
He said it is a “brazen attempt” by a party whose “unpopularity is scaring them into making major constitutional changes without consultation”.
The Tory added: “16-year-olds will be able to vote in an election but not stand as candidates, and they will be able to vote but not permitted to buy a lottery ticket, consume alcohol, marry, or go to war.
“This is a hopelessly confusing policy from Labour, who appear uncertain themselves about what they want young people to be allowed to do.”
Half of the public were opposed to giving 16 and 17 year olds the vote when Labour suggested it ahead of last year’s election, polling by More in Common found in May 2024.
A total of 47% of those polled of all ages were opposed, while 28% supported the change.
The older people were, the more opposed they were, with just 10% of 75-year-olds and over strongly or ‘somewhat’ supportive.
Gen Z (aged 18-26) were the most supportive, with 49% strongly or somewhat supportive.
But the polling showed people were sceptical about Labour’s motivations for lowering the voting age, with the majority of voters from all parties thinking Labour was doing it to benefit them in elections.
The polling also found most people, including Gen Z, did not feel mature enough to be able to vote until they were 18.
Bank cards allowed as voter ID
As part of the strategy, voter ID will also be extended to include UK-issued bank cards.
Mr Holmes raised concerns using bank cards for ID will “undermine the security of the ballot box”.
When other IDs that are already accepted, such as the veteran card and UK driving licences, become digitised, they will also be accepted in that form.
A digital Voter Authority Certificate will also be created to ensure electoral registration officers, who maintain registers of electors and absent voters, will be able to accept digital forms of ID.
Close loopholes for foreign donors
In an effort to boost transparency and accountability in politics, the government said it will close loopholes allowing foreign donors via “shell companies” to influence UK political parties.
New requirements will be introduced so unincorporated associations will have to carry out checks on donations over £500 to tackle foreign interference.
The Electoral Commission will also be given new powers to enforce heavier fines of up to £500,000 on those who breach political finance rules, and enable tougher sentences for those who abuse election campaigners.