Fathers ‘constantly fighting the NHS’ to get severely disabled sons the care they need
A father of four has said he is “constantly fighting the NHS” to get the care his two severely disabled sons need – and his fears about the future grow as he sees friends in similar situations putting their children into care.
Paul and his husband Michael Atwal-Brice adopted Levi and Lucas when the children were babies.
Now aged 16 and diagnosed with autism and epilepsy – among other disabilities – both parents have had to leave their jobs to care for them full-time.
They also care for Lotan and Lance, twin boys without any disabilities.
“Everything is just a battle with the NHS,” Paul, from Thurnscoe in South Yorkshire, told Sky News.
“Unless you’re prepared to stand up and fight, you get nothing.”
The two teens have been left waiting for NHS care at every stage.
Levi’s epilepsy means he requires frequent hospitalisation.
When Paul last had to call an ambulance – while the family were away on holiday – they had to wait 45 minutes, despite the fact Levi was bleeding heavily from the head. He had fallen while having a seizure and hit his head on a door frame.
“Once the seizures had stopped, he gets graded down to a category two, so the wait gets longer.
“Even though we were telling them he can’t wait because he won’t even let us touch his head and blood was going everywhere. It doesn’t matter.
“And this was before the latest strikes and challenges this winter.”
Once they had made it to the hospital, they then had to wait more than four hours in a hospital corridor to be seen.
“It was awful. Levi is severely autistic and non-verbal and he gets upset very easily so he was screaming the corridors down, upsetting other people, but they couldn’t move him.”
Paul and Michael have both given up work to care for their children
‘Friends are putting their children into care’
Levi and Lucas are both nearing adulthood, which leaves Paul fearing for their future.
“All the services are being cut back,” he said.
“The health service is a fight and struggle to get anywhere.
“A lot of friends of ours are putting their children into full-time care because they can’t cope with all the services being cut back, and this costs thousands and thousands a year to do this, a cost which the NHS has to pick up.
“It doesn’t make sense.”
Both boys need appointments every six weeks, but amid growing pressure on the National Health Service, this has been cut back to three months – and is often even six because clinicians cannot fit them in.
“It’s disgraceful,” said Paul. “Something needs to be done to fix this. These are life-saving appointments for the boys.”
Wendy Lowder, Barnsley executive director for place health and adult social care at NHS South Yorkshire said: “I’m really saddened about the experiences we’ve heard about from this family.
“Having a seamless transition between services when you reach 16 is so important to families at this time. Our teams have worked closely with the family to resolve all the issues they have experienced.
“We are now reviewing how the supply of these sorts of items works better for any families in the same situation in the future.”
Two months without food syringes
The teens are very underweight, so they have to be syringe fed fibre drinks from a dietician, but the hospital has said they can’t prescribe them any more.
Instead, the family has to get them via the GP.
But a communication breakdown left them without the required food for two months.
“We went to the GP just before Christmas and they didn’t know anything about it. They said they couldn’t order them either.”
Instead, Paul and Michael had to try and feed them with a plastic IKEA beaker, which turned out to be a “disaster”.
“They had liquid running down them as they couldn’t take the quantity, so there was a lot of waste and upset.
“We were promised we’d have a delivery to the house over Christmas, but it never came.”
South West Yorkshire Partnership NHS Foundation Trust has been contacted for comment.
A £5,000 energy bill
The family’s energy bills are going up £1,500 a year and they are estimated to pay almost £5,000 for their gas and electric in the next 12 months.
“Electric bills are our biggest worry of all.
“They’ve got to a stage where we can no longer carry them safely up and down stairs so we’ve had to have a lift fitted in the house. We can’t not have that going, it needs to be powered by electricity all the time.
“They have seizures all the time and the lift is literally a lifesaver.”
Meanwhile, the washing machine is constantly running because the boys are incontinent, and bedsheets and clothing have to be changed all the time.
The NHS will only provide four nappies a day to the family: “This is crazy. How can you tell the boys that they can only wee and poo four times a day? You wouldn’t do that to anyone.
“Their beds are electric, they have a therapy bath that also runs on power and their sensory room is full of calming lights and sounds that also cost money.
“In addition to all this, we are now spending £120 on fuel a week.”
Kicking off a major ongoing project on the future of the National Health Service, an hour-long debate into the future of the NHS will take place this evening, live from University Hospital Coventry.
It begins at 7pm and will be hosted by Sky News presenter Anna Botting alongside a special panel.
If you are an NHS worker and would like to share your experiences with us anonymously, please email NHSstories@sky.uk.
Andrew always denied the allegations – but the repeated accusations would not go away.
And his associations risked real reputational damage to the royal family.
His friendship with convicted paedophile Jeffrey Epstein, his dealings with an alleged Chinese spy, and then the posthumous publication of his accuser, Virginia Giuffre’s memoir.
Her family said she brought down a British prince with her truth and extraordinary courage.
The piling pressure was starting to overshadow the work of Andrew’s wider family. And with the Prince of Wales soon heading to Brazil for his Earthshot award, enough was enough.
We understand the Royal Family, including Prince William backed the King’s leadership on this matter.
The King made the decisions, his family supported them.
Both Andrew, and former secretary of state Peter Mandelson’s public lives have been dismantled by their relationship with Jeffrey Epstein. Pic: PA
Andrew will leave Royal Lodge, his large home on the Windsor estate. His ex-wife, Sarah Ferguson, who also lived there, will “make her own arrangements”.
It was their family home for many years. Both daughters, Princess Beatrice and Princess Eugenie, who grew up there, will keep their titles.
Andrew’s ex-wife has continued to live at the Royal Lodge estate but will now be left to make her own housing arrangements. Pic: PA
As for Andrew, he will soon move to Sandringham – the King’s private Norfolk estate – where the family traditionally gathers for Christmas; and he will be funded privately by the King.
Read more:
Andrew allegations should be examined in ‘fullest ways’
This is all a formal process carried out in consultation with official authorities, but the government supports the decision taken.
This will not have been easy for the King, but he knew he could not ignore public opinion. The criticism and anger directed at Andrew was never going to stop – and only he had the power to take the ultimate action against his own brother.
For years, Andrew enjoyed the perks and privileges of his powerful position, but his birthright could not withstand withering public disdain.
And now he’s paid the ultimate price.
Corridor care in Britain’s hospitals is a “crisis in plain sight”, a charity has warned, with patients complaining of long waits and warzone-like conditions.
An Age UK report describes “truly shocking” incidents of elderly people waiting days for care, including them hearing and seeing others dying as they wait.
According to the latest figures for England, 75% of patients were seen within four hours in A&Es in September.
But the number of people waiting more than 12 hours from the decision to admit to actually being admitted – known as “corridor care” – stood at 44,765, a jump from 35,909 in August.
Describing her experience, a 79-year-old woman from south London told Age UK: “The corridors were lined with patients on trolleys, hooked up to drips, some moaning in pain.
“It reminded me of war films, with queues of stretchers and people suffering.”
Others spoke of “puddles of urine” on the floor as immobile patients are unable to go to the toilet – and patients being forced to use bedpans in corridors.
The report raises concerns that poor quality care “is now almost expected” in some A&E departments and warns the situation could “get worse” as the NHS heads into winter.
One person said her friend’s mother was left waiting “ages when she was having a heart attack, and died before receiving any care”.
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‘The NHS saved my daughter – then took support away’
Age UK said many patients are now unwilling to go to A&E, even if they are in a life-threatening situation.
It called on the government to “urgently” tackle corridor care, with specific deadlines for ending long waits, as it warned older people have been disproportionately affected.
Responding to the criticism, health minister Karin Smyth told Sky News: “The stories in this report are heartbreaking.
“No one should receive care in a corridor – it’s unacceptable, undignified, and we are determined to end it.
“To tackle a problem, you’ve got to be honest about it. For the first time, the NHS will measure and publish the number of patients waiting in corridors.”
The government is investing £450m to build same-day urgent and emergency care centres, buy 500 new ambulances, build 40 new mental health crisis centres, and give NHS leaders on the ground more power to deliver local solutions.
Ms Smyth also urged people to get vaccinated, as flu season has arrived weeks earlier than usual.
“I’ll be at that gate with my kilt,” says Inverness protester Thomas.
He was one of the first people Sky News met as we visited the Highland city preparing to welcome 300 male asylum seekers at a 150-year-old army barracks just minutes from the High Street.
But if our experience testing the temperature is anything to go by, it seems the welcome will be far from the traditional hospitality this part of the world is famous for.
The Scottish Highlands currently has no asylum seekers, according to the latest Home Office data. It makes it a unique part of Britain as other communities witness rising numbers of arrivals.
The UK government is planning drastic changes in the coming weeks. It announced plans to bring 309 male asylum seekers to Cameron army barracks in Inverness.
The military base was built in 1876 and now looks set to become Britain’s most northern migrant centre as officials aim to cut the use of costly asylum seeker hotels.
An aerial view of the barracks being earmarked by the government
Thomas, who did not want to share his full name, said he had signed a petition against the proposals and hinted he was ready to campaign against it.
He said: “I’ll be at that gate with my kilt on.
“I’ll be there with posters and shouting ‘get tae’. I think we are more scared. I think it’s more invasion.”
Fellow protester Chloe said: “Everyone is scared. I am worried for my child.”
She cited the recent conviction of migrant Deng Chol Majek, who stabbed hotel worker Rhiannon Whyte to death with a screwdriver in the West Midlands.
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Asylum seeker found guilty of murder
Another man, who did not want to provide his name, told Sky News he was previously homeless.
“It’s disgusting. It’s a shambles. I wouldn’t want to say what I’d do to them (migrants) but I wouldn’t be putting them in the barracks,” he told us.
He concluded: “We should ship them back to their own country. They don’t deserve to be in this country.”
‘Extreme views’
I also met offshore wind engineer Kai Fraser, who said: “I have no problem with them being here. There are a few people who have got really big problems with it which are unfounded. They need to go somewhere.
“It is peddled by Farage and his ilk. It is exposing quite a few folks’ extreme views that were traditionally hidden behind closed doors.”
Read more from Sky News:
Andrew loses titles
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Since the announcement was made by the Home Office, it has emerged Cameron Barracks requires a £1m revamp, including new boilers and the possible removal of asbestos.
Contract tender documents seen by The Times suggested the work was due to begin in January, weeks after the asylum seekers were supposed to be moving in.
There are questions over whether the arrivals could be delayed over fears of a legal challenge from migrants over the conditions. Councillors in Inverness are set to meet in the coming days amid suggestions they could use planning laws to block the plans.
Swinney: It’s a mess
Scotland’s First Minister John Swinney said UK ministers, who are responsible for the asylum system, had made “another mess”.
He said: “What will be the availability of healthcare services? What will be the availability of support services? We have no answers to these questions. The Home Office has given no answers whatsoever.”
A Home Office spokesperson said: “We are furious at the level of illegal migrants and asylum hotels.
“This government will close every asylum hotel. Work is well underway, with more suitable sites being brought forward to ease pressure on communities.
“We are working closely with local authorities, property partners and across government so that we can accelerate delivery.”
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