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Fathers ‘always combating the NHS’ to get severely disabled sons the care they want | UK Information

A father of 4 has stated he’s “always combating the NHS” to get the care his two severely disabled sons want – and his fears concerning the future develop as he sees pals in comparable conditions placing their youngsters into care.

Paul and his husband Michael Atwal-Brice adopted Levi and Lucas when the kids had been infants.

Now aged 16 and recognized with autism and epilepsy – amongst different disabilities – each dad and mom have needed to go away their jobs to look after them full-time.

In addition they look after Lotan and Lance, twin boys with none disabilities.

“The whole lot is only a battle with the NHS,” Paul, from Thurnscoe in South Yorkshire, informed Sky Information.

“Except you are ready to face up and combat, you get nothing.”

The 2 teenagers have been left ready for NHS care at each stage.

Levi’s epilepsy means he requires frequent hospitalization.

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 very fact Levi was bleeding closely from the pinnacle. He had fallen whereas having a seizure and hit his head on a door body.

“As soon as the seizures had stopped, he will get graded right down to a class two, so the wait will get longer.

“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 all over the place. It does not matter.

“And this was earlier than the newest strikes and challenges this winter.”

As soon as that they had made it to the hospital, they then needed to wait greater than 4 hours in a hospital hall to be seen.

“It was terrible. Levi is severely autistic and non-verbal and he will get upset very simply so he was screaming the corridors down, upsetting different folks, however they could not transfer him.”

Paul and Michael have each given up work to care for his or her youngsters

‘Buddies are placing their youngsters into care’

Levi and Lucas are each nearing maturity, which leaves Paul fearing for his or her future.

“All of the providers are being in the reduction of,” he stated.

“The well being service is a combat and wrestle to get wherever.

“A whole lot of pals of ours are placing their youngsters into full-time care as a result of they cannot deal with all of the providers being in the reduction of, and this prices 1000’s and 1000’s a yr to do that, a value which the NHS has to choose up.

“It does not make sense.”

Each boys want appointments each six weeks, however amid rising strain on the Nationwide Well being 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 is disgraceful,” stated Paul. “One thing must be performed to repair 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 am actually saddened concerning the experiences we have heard about from this household.

“Having a seamless transition between providers while you attain 16 is so necessary to households presently. Our groups have labored carefully with the household to resolve all the problems they’ve skilled.

“We at the moment are reviewing how the availability of those kinds of things works higher for any households in the identical scenario sooner or later.”

Two months with out meals syringes

The teenagers are very underweight, so that they should be syringe fed fiber drinks from a dietician, however the hospital has stated they cannot prescribe them any extra.

As a substitute, the household has to get them by way of the GP.

However a communication breakdown left them with out the required meals for 2 months.

“We went to the GP simply earlier than Christmas and so they did not know something about it. They stated they could not organize them both.”

As a substitute, Paul and Michael needed to attempt to feed them with a plastic IKEA beaker, which turned out to be a “catastrophe”.

“They’d liquid operating down them as they could not take the amount, so there was quite a lot of waste and upset.

“We had been promised we might have a supply to the home over Christmas, nevertheless it by no means got here.”

South West Yorkshire Partnership NHS Basis Belief has been contacted for remark.

A £5,000 power invoice

The household’s power payments are going up £1,500 a yr and they’re estimated to pay nearly £5,000 for his or her gasoline and electrical within the subsequent 12 months.

“Electrical payments are our largest fear of all.

“They have to a stage the place we will not carry them safely up and down stairs so we have needed to have a elevate fitted in the home. We won’t not have that going, it must be powered by electrical energy on a regular basis.

“They’ve seizures on a regular basis and the elevate is actually a lifesaver.”

In the meantime, the washer is consistently operating as a result of the boys are incontinent, and bedsheets and clothes should be modified on a regular basis.

The NHS will solely present 4 nappies a day to the household: “That is loopy. How are you going to inform the boys that they will solely wee and poo 4 occasions a day? You would not try this to anybody.

“Their beds are electrical, they’ve a remedy bathtub that additionally runs on energy and their sensory room is stuffed with calming lights and sounds that additionally value cash.

“Along with all this, we at the moment are spending £120 on gasoline per week.”

Kicking off a significant ongoing venture on the way forward for the Nationwide Well being Service, an hour-long debate into the way forward for the NHS will happen this night, stay from College Hospital Coventry.

It begins at 7pm and will likely be hosted by Sky Information presenter Anna Botting alongside a particular panel.

If you’re an NHS employee and wish to share your experiences with us anonymously, please e-mail

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