A father of 4 has stated he’s “constantly fighting the NHS” to get the care his two severely disabled sons want – and his fears in regards to the future develop as he sees pals in related conditions placing their kids into care.
Paul and his husband Michael Atwal-Brice adopted Levi and Lucas when the youngsters had been infants.
Now aged 16 and recognized with autism and epilepsy – amongst different disabilities – each mother and father have needed to go away their jobs to take care of them full-time.
They additionally take care of Lotan and Lance, twin boys with none disabilities.
“Everything is just a battle with the NHS,” Paul, from Thurnscoe in South Yorkshire, instructed Sky News.
“Unless you’re prepared to stand up and fight, you get nothing.”
The two teenagers have been left ready for NHS care at each stage.
Levi’s epilepsy means he requires frequent hospitalisation.
When Paul final needed to name an ambulance – whereas the household had been away on vacation – they needed to wait 45 minutes, regardless of the actual fact Levi was bleeding closely from the pinnacle. He had fallen whereas having a seizure and hit his head on a door body.
“Once the seizures had stopped, he gets graded down to a category two, so the wait gets longer.
“Even although we had been telling them he cannot wait as a result of he will not even allow us to contact his head and blood was going in all places. It does not matter.
“And this was before the latest strikes and challenges this winter.”
Once they’d made it to the hospital, they then needed to wait greater than 4 hours in a hospital hall 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.”
‘Friends are placing their kids into care’
Levi and Lucas are each nearing maturity, which leaves Paul fearing for his or her future.
“All the services are being cut back,” he stated.
“The health service is a fight and struggle to get anywhere.
“Numerous pals of ours are placing their kids into full-time care as a result of they can not address all of the providers being in the reduction of, and this prices 1000’s and 1000’s a 12 months to do that, a value which the NHS has to choose up.
“It doesn’t make sense.”
Both boys want appointments each six weeks, however amid rising strain on the National Health Service, this has been in the reduction of to a few months – and is usually even six as a result of clinicians can not match them in.
“It’s disgraceful,” stated Paul. “Something needs to be done to fix this. These are life-saving appointments for the boys.”
Wendy Lowder, Barnsley government director for place well being and grownup social care at NHS South Yorkshire stated: “I’m really saddened about the experiences we’ve heard about from this family.
“Having a seamless transition between providers if you attain 16 is so necessary to households presently. Our groups have labored intently with the household to resolve all the problems they’ve skilled.
“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 with out meals syringes
The teenagers are very underweight, so that they need to be syringe fed fibre drinks from a dietician, however the hospital has stated they can not prescribe them any extra.
Instead, the household has to get them through the GP.
But a communication breakdown left them with out the required meals for 2 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 needed to attempt to 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 had been promised we might have a supply to the home over Christmas, but it surely by no means got here.”
South West Yorkshire Partnership NHS Foundation Trust has been contacted for comment.
A £5,000 power invoice
The household’s power payments are going up £1,500 a 12 months and they’re estimated to pay virtually £5,000 for his or her gasoline and electrical within the subsequent 12 months.
“Electric bills are our biggest worry of all.
“They’ve acquired to a stage the place we are able to now not carry them safely up and down stairs so we have needed to have a carry fitted in the home. We cannot not have that going, it must be powered by electrical energy on a regular basis.
“They have seizures all the time and the lift is literally a lifesaver.”
Meanwhile, the washer is consistently operating as a result of the boys are incontinent, and bedsheets and clothes need to be modified on a regular basis.
The NHS will solely present 4 nappies a day to the household: “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 electrical, they’ve a remedy bathtub that additionally runs on energy and their sensory room is filled with calming lights and sounds that additionally price cash.
“In addition to all this, we are now spending £120 on fuel a week.”
Kicking off a significant ongoing mission on the way forward for the National Health Service, an hour-long debate into the way forward for the NHS will happen this night, dwell from University Hospital Coventry.
It begins at 7pm and will probably be hosted by Sky News presenter Anna Botting alongside a particular panel.
If you’re an NHS employee and wish to share your experiences with us anonymously, please electronic mail [email protected]