'Unless you're prepared to fight, you get nothing': One family's experience with the NHS

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."

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'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."

One month 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 the syringes any more.

Instead, the family has to get them via the GP.

But a communication breakdown left them without the required syringes to deliver their food for one month.

"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, join our live phone-in show - NHS: Your Say - at 2pm. Call on 020 8167 2200 and leave us a message for your chance to speak on the programme.

Tonight at 7pm, there will be an hour-long debate into the future of the NHS live from University Hospital Coventry, hosted by 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.