‘Most common condition you’ve never heard of’: Campaigners demand new plan for FND treatment
Described as the “most common condition you have never heard of”, functional neurological disorder (FND) impacts up to 100,000 adults in the UK.
And campaigners are warning there is no specific plan for patient care on the NHS.
Many sufferers, like Tom Plender, struggle for years to get a diagnosis because of the lack of knowledge by healthcare professionals.
Tom was an aspiring jazz musician at the Guildhall School of Music and Drama in London.
His demanding schedule damaged his wrist and knees which triggered FND.
“I was doing gigs every night, my career was really taking off,” he said.
“Suddenly you’re disabled, and I find myself in a situation where I’m housebound. I progressively lost the use of my limbs and had carers coming in everyday to help with washing.”
FND has a number of symptoms including seizures, spasms and chronic pain, but they are often dismissed as being purely psychological.
After 12 years of trying to find a diagnosis, Dr Mark Edwards, professor of neurology and Interface Disorders, King’s College London, confirmed Tom suffered from FND.
“It sits right at the junction between neurology and psychiatry, it’s a neuropsychiatric condition,” he said.
“One way of thinking about it is that it’s a problem with being able to access or control your own body normally so you have a situation where the person is trying as hard as they can, all the basic wiring is ok, but people can’t seem to access it in a normal way.”
Tom Plender was an aspiring jazz musician
Because of the way the condition unusually intersects between neurology and psychiatry, many patients say they are stigmatised.
The charity FND Hope UK says those with FND face multiple challenges when trying to access effective treatment and care.
They recently surveyed all of the clinical commissioning groups and health boards and found that 50% had no specific agreement to treat FND and 9% said that they did not accept referrals for treatment.
If you are an NHS worker and would like to share your experiences with us anonymously, please email NHSstories@sky.uk
On 8 February, doctors and campaigners will sit down with MPs in Westminster to discuss FND.
Cindy Smulders, a trustee for FND Hope UK, said: “We are very keen to get an optimum care pathway for FND.
“Because at the moment there isn’t one. It’s very difficult to get diagnosed, it can take up to two years or more.
“And when you do get one, you get given a website and a leaflet and that’s it.
“Not having a path means you just get thrown from one department to another, you go round and round in circles, with endless scans and nobody connects the dots.”
UK
‘A catastrophic scandal’: Inside the tower block so dangerous residents face being kicked out at any moment
The moment we step into Willow Rise, the smell of damp is overpowering.
There are water stains across the carpet and rotten wood on the doors.
Around the corner, there’s a hole in the wall, barely patched up with a piece of polystyrene sheet.
We’re meeting a resident on the 13th floor of the building in Kirkby, Merseyside – but the lifts are broken and wires hang out of the service panel.
Like everyone living here, we will have to walk.
The disrepair in this block is everywhere you look.
Damp staining and ceiling damage around the block
It has now been deemed so unsafe by Merseyside Fire and Rescue Service that they are days away from serving a rare prohibition notice on this tower and its neighbour, Beech Rise, meaning residents will have to leave with immediate effect.
In total, 160 households here face instant homelessness.
After climbing 13 flights of stairs, we meet Chris Penfold-Ivany.
‘A catastrophic scandal’
He has terminal cancer, and after chemotherapy and a liver transplant, that climb is now the only way he can get up to his flat.
Chris Penfold-Ivany warns ‘this is another Grenfell in the making’
He tells us it’s making him breathless. He can no longer get his prescriptions delivered, as the drivers won’t come up all the stairs.
“It’s a catastrophic scandal that we have been left like this,” he says.
He has lived in this flat for 15 years and has watched the block slowly begin to fall apart over the last decade.
He tells us that numerous complaints have achieved nothing. “I’m going to say it,” he says, “this is another Grenfell in the making.”
‘Nobody can live like this‘
A few floors down, Arunee Leerasiri opens the door to us, in floods of tears.
The stress of the last few weeks has left her anxious and overwhelmed. There are boxes everywhere, bare hooks on the walls where pictures hung.
She is packing up her life just three years after putting her life savings into buying this flat.
Arunee Leerasiri says she doesn’t even recognise her flat as her home anymore
Her elderly mother has come to visit, but she had to hire removal men already to take her mattress into storage as she couldn’t manage without the lifts.
Tonight, and until they are told they must leave, they will sleep on the floor.
“I can’t eat, I can’t sleep,” she tells us, through tears. “Sometimes, if I’m honest, I can’t even think. This used to be my home, and now I look around and I don’t even recognise it.”
“Nobody can live like this,” she adds.
‘Danger, 415 volts’
Water damage around electrical equipment, including a ‘Danger high voltage’ labelled box
She shows us a video she filmed just a few weeks ago, of one of the electrical risers on the ground floor.
None of us can quite believe what we are seeing – water is pouring through the ceiling, directly on to fuse boxes and electrical wiring.
Arunee takes us down to show us the cupboard. The water has now stopped but there are damp stains all over the floor and around the electrical equipment.
The water pipes and electric boxes are just inches away from one another within the cupboard.
One of the boxes, marked ‘Danger, 415 volts’, is rusted through.
Next to it, there is a notice stuck to a resident’s door telling them a leak has been identified in their flat – and as a leaseholder, they will be responsible for paying to fix it.
“Tell me, how is this safe?” Arunee says. “Why is this building allowed to be open for the public, as a dwelling, with this kind of set-up?”
A hole in a wall patched up with polystyrene
Hidden owners and a plea to the government
Merseyside Fire and Rescue tell us they have been serving enforcement notices on the building managers for years, to no avail.
They have now been told there is no money for the millions of pounds worth of repairs that will be needed to bring the blocks up to a safe standard.
Read more from Sky News:
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They have mandated a ‘waking watch’, where teams physically patrol the buildings daily to check for fire risks, without which they will serve the prohibition notice and tell residents they must leave straight away.
Knowsley Council has stepped in to pay for this temporarily – at a cost of £3,000 per day.
Their deputy leader tells us, though, that the money will soon run out.
Willow Rise and Beech Rise Towers in Merseyside have both been condemned by the fire service
Where to go?
With a complex management structure and several owners, managers and agents over the years, the council says it doesn’t even know who is to blame for the disrepair – or who even has the legal responsibility for maintaining the buildings.
It says discussions are ongoing with central government about whether any extra help – or money – can be provided to try to fix the mess.
Right now though, all the residents can do is wait.
With no date to leave and no idea if anything can be done to keep the buildings open, they are spending every day fearing the call to tell them they have to go.
They can only hope there will be somewhere for them if they do.
Reform UK chairman Zia Yusuf has reversed his decision to quit the party, saying “the mission is too important” and that he “cannot let people down”.
Instead, he said he will return in a new role, heading up an Elon Musk-inspired “UK DOGE” team.
In a statement, he said: “Over the last 24 hours I have received a huge number of lovely and heartfelt messages from people who have expressed their dismay at my resignation, urging me to reconsider.”
He added: “I know the mission is too important and I cannot let people down.
“So, I will be continuing my work with Reform, my commitment redoubled.”
Mr Yusuf said he would be returning in a new role, seemingly focusing on cuts and efficiency within government.
He said he would “fight for taxpayers”.
Only two days prior, Mr Yusuf dramatically handed in his resignation.
He claimed he no longer thought getting a Reform government elected was a “good use of my time” – but has now seemingly changed his mind.
Reform UK leader Nigel Farage welcomed the news of Mr Yusuf’s return.
He said: “I am delighted that Zia Yusuf will head up Reform UK’s DOGE department.”
Nigel Farage welcomed Zia Yusuf’s return. File pic: PA
Read more:
Why did Zia Yusuf resign as chairman of Reform UK?
Reform’s rise forces rethink for SNP
‘Farage could become PM’
Mr Yusuf’s initial decision to quit came after he publicly distanced himself from the party’s new MP, Sarah Pochin, when she asked Sir Keir Starmer about banning the burka at Prime Minister’s Questions.
Reform said a ban was not party policy – and the chairman called it a “dumb” thing to ask.
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What is DOGE?
DOGE is a meme-coin inspired creation of Musk’s, standing for the Department of Government Efficiency.
It is the latest right-wing US import into British politics.
Before his public fallout with Donald Trump, the tech billionaire said his focus was saving taxpayers’ money by locating wasteful spending within government and cutting it.
Read more: How Elon Musk’s mission to cut government spending fell flat
However, opposition politicians questioned the impact of his efforts and how much he actually saved.
Musk initially had ambitions to slash government spending by $2trn (£1.5trn) – but this was dramatically reduced to $1trn (£750bn) and then to just $150bn (£111bn).
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