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.
England and Scotland fans have found out where their World Cup group games will be played when the tournament kicks off in June.
England, who are in Group L, will begin their tournament against Croatia in Dallas at 4pm EST (9pm BST) on 17 June. They will then go on to face Ghana in Boston at 4pm EST (9pm BST) on 23 June and Panama in New Jersey, New York, at 5pm EST (10pm BST) on 27 June.
Scotland are in Group C, and their first match will be against Haiti in Boston at 9pm EST on 13 June (2am GMT the following morning).
They will go up against Morocco also in Boston at 6pm EST (11pm GMT) on 19 June and then Brazil in Miami at 6pm EST (11pm GMT) on 24 June.
Fans are expected to rush to sort their travel and accommodation plans now that they know where and when the matches take place.
Read more: Unapologetically political – a World Cup draw like no other
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England and Scotland learn World Cup fate
Wales and Northern Ireland have yet to find out if they will qualify.
Wales must face a play-off against Bosnia and Herzegovina in Cardiff, then either Italy or Northern Ireland, if they are victorious.
If they beat these play-off opponents, they will secure their place in Group B alongside Canada, Qatar and Switzerland.
However, Northern Ireland will also be vying to guarantee their spot in the same group if they can beat Italy and then either Wales or Bosnia and Herzegovina.
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World Cup 2026 – who England, Scotland, Wales, Northern Ireland and the Republic of Ireland will play
Scotland and England now know who they will face in the group stage of the next summer’s world cup.
But the fates of Northern Ireland, the Republic of Ireland and Wales won’t be determined until they compete in pre-tournament play-off matches in March.
England are in Group L along with Croatia, Panama and Ghana. Their first match will be against Croatia, who beat them in the semi-finals of the 2018 World Cup in Russia.
Pic: Reuters
Scotland’s first match will be against Haiti, in Group C.
Brazil and Morocco are the other Group C teams – both countries were also in the same opening group as Scotland in the 1998 World Cup in France.
Trump and Infantino at the World Cup draw
Wales have yet to find out if they will qualify as they must face a play-off against Bosnia and Herzegovina in Cardiff, and then either Italy or Northern Ireland, if they are victorious.
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If they can overcome these play-off opponents then they will secure their place in Group B along with Canada, Qatar and Switzerland. But Northern Ireland will also be vying and hoping to guarantee their spot in the same group if they can beat Italy and then either Wales or Bosnia and Herzegovina.
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‘Bring it on!’: Scotland fans react to World Cup draw
The Republic of Ireland also need to get through the play-offs first and are paired against the Czech Republic for their semi-final. Should Ireland win that match, they will need to beat either North Macedonia or Denmark to get to the finals where an opening group containing joint hosts Mexico, South Africa and South Korea awaits.
This was a World Cup draw like no other. Crafted less for the teams but for one man.
The choice of venue. The creation of a new trophy. The closing music act.
Donald Trump was lavished with the adulation he craves by FIFA President Gianni Infantino and feels others unfairly deny him.
Knowing how much being overlooked by the Nobel Committee hurt the US president, there was Mr Infantino with FIFA’s newly-created Peace Prize to hand over. And a medal for Mr Trump to wear.
“This is truly one of the great honours of my life,” he said. “And beyond awards, Gianni and I were discussing this. We saved millions and millions of lives.”
This was all on the stage in front of an audience who turned up to find out who they will be playing at the World Cup.
England handed an undaunting route past Croatia, Panama and Ghana. Scotland paired with newcomers Haiti before tricky reunions from their last men’s World Cup in 1998 against Brazil and Morocco.
Pic: Reuters
But the show before the draw could even begin – presided over by Rio Ferdinand – took almost as long as a football match, at 87 minutes after the noon kick-off was delayed.
There was a walk of self-promotion to complete – “I guess they have to wait” – before taking his seat in the Kennedy Center. Or the Trump Kennedy Center as the president takes to calling the venue picked 1.5 miles from the White House.
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England manager Thomas Tuchel reacts to draw
“It was falling apart,” he said, delaying the walk into the auditorium. “And now it’s, it’s pretty much back.”
Mr Infantino could only watch on, beaming, at his friend.
“We had a dead country,” Mr Trump went on, “and now we have the hottest country anywhere in the world”.
There was the awkwardness of being reminded, before receiving the peace accolade, about threats to launch military strikes on Venezuela to stop the drugs trade.
“I did settle eight wars, and we have a ninth coming,” he swatted away the question. “Which nobody’s ever done before. But I want to really save lives. I don’t need prizes.”
But FIFA knew how much he wanted more gold for the collection with the prize.
More on this story:
What draw means for England, Scotland, Wales, Northern Ireland and Republic of Ireland
Donald Trump and FIFA president Gianni Infantino. Pic: Reuters
Pic: Reuters
And for all the mockery and disdain targeted at FIFA, how many sports would relish having the US president spend several hours attending a procedural event determining the placing of teams in groups for a tournament?
How many would dish out the same flattery to secure direct lines to the leader of the nation staging their championship?
Many have benefited from Mr Trump’s stardust and swagger being attached to this spectacle.
Even Port Vale’s most famous fan – Robbie Williams – secured a walk-on role, exceeding his profile this side of the Pond.
And the Village People are reaping the rewards of becoming the unlikeliest of Trump hype acts.
The festivities ended with eyes fixed back up to the presidential seating and the YMCA dance being performed.
This was an afternoon that dispelled any pretence that FIFA keeps a distance from politics. It was unapologetically political. But few speak out in the FIFA world as the redistributed wealth keeps rolling back in their direction.
It would be easy to forget this isn’t entirely America’s World Cup. They’re sharing hosting with Canada and Mexico.
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‘Bring it on!’: Scotland fans react to World Cup draw
And eventually the spotlight was ceded to their leaders – very briefly – as Mexican President Claudia Sheinbaum and Canadian Prime Minister Mark Carney drew out their countries’ names.
But it did live up to FIFA’s mantra that football can unite the world.
The neighbours were brought together here on a snowy day in Washington. And tensions – often stoked by Mr Trump with Canada and Mexico – thawed in the name of football.
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