PARENTS

Mum Disappointed By David Cameron's Response To Son's Plea For Cerebral Palsy Treatment Funding

Ben Baddeley needs treatment to help him walk again.

23/03/2016 17:31 GMT

David Cameron has responded to an 11-year-old boy's letter about why the NHS can't fund his rehabilitation treatment after having major surgery.

Ben Baddeley from Staffordshire, who has spastic diplegia cerebral palsy, wrote to the Prime Minister after the NHS pulled the funding for him to have spinal surgery to help him walk again.

Although an anonymous donor covered the £11,440 surgery, the NHS refused to fund the 18 months of further rehabilitation treatments he needed, which costed just under £2,000 every month.

Ben's mother, Amy Baddeley, has said she is "disappointed" with Cameron's response. 

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In his reply, Cameron thanked Ben for his letter and said he was "sorry to hear" his operation was cancelled.

"I understand your local clinical commissioning group, NHS North Staffordshire, has offered to discuss the best way for you to access physiotherapy through NHS funding," Cameron wrote in the reply.

"I understand the NHS is currently considering a specific funding request that could make this happen.

"I do hope you continue to receive the treatment that you need so you can continue to get better."

Mrs Baddeley was not happy with the reply.

"The discussion he mentions with NHS England has already happened," she told The Huffington Post UK.

"The funding request he mentions has been refused four times because the NHS claim to have 'no proof' that this treatment is cost effective and our hospitals near us don't employ the therapist needed."

Amy Baddeley
Amy Baddeley and her son Ben

Baddeley also said she felt Cameron's letter to her son was impersonal.

"How he expects an 11-year-old to understand what he has typed out and not even bother to write to him properly is beyond me," she said.

"He has simply repeated the exact same thing the NHS have been saying for the past two years.

"I'm really disappointed that he clearly hasn't looked at Ben's case because if he had he would know that the things he mentions have already been tried, attempted and failed.

"He hasn't answered any of Ben's questions - not even one of them - and the words he has used in his letter make no sense to Ben, so I've had to explain what it all means."

Ben has his rehabilitation treatment paid for until the 15 April and the mother said she is trying her best to raise the money to continue it.

"We've sold everything that we could live without including our car," she added.

Ben sent Cameron the letter pictured below at the beginning of March 2016.

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"I really hope you get this letter because my family really needs help," Ben wrote to Cameron.

"Why can't the NHS pay for my treatment? Do you know why?

"Can you please fix it?"

Ben explained in his letter how he had an operation, which was funded by donations, but he doesn't understand why the NHS won't pay for his follow-up treatment.

"It's really hard work for my mum and dad and I don't think it's very fair.

"I wanted to ask you if you could sort things out so I can get my rehabilitation paid for by the NHS. Can you do that?

"We are always busy fundraising so we miss out on family time quite a lot and that's a bit sad for us."

Ben was put forward for the spinal surgery that would reduce the pain when he walked, under the NHS three years ago.

Baddeley said the NHS took Ben through two years of pre-operations tests, scans and body conditioning in preparation for his surgery.

Five days before the operation, the Baddeley family received a letter informing them that to continue with Ben's surgery there was an outstanding balance of £11,440 of which the NHS could not fund.

"Ben's consultant stopped all of Ben's pain medications a week before his surgery date because it wouldn't have been safe for Ben to have major spinal surgery with the amount of medication in his system," Baddeley explained.

"So at this point Ben was in agony and we simply couldn't leave our son in that amount of pain."

Baddeley set up an appeal online and an anonymous donator paid the £11,440 direct to the NHS, meaning Ben's surgery was rescheduled at the QMC in Nottingham and went ahead.

"Ben went into hospital a wheelchair user and walked out of hospital two days later, which to us was nothing short of a miracle," his mum said.

"Two days after we got home, the NHS contacted us to inform us that they now consider Ben's surgery to have been 'private' and now will not fund any of his rehabilitation, which costs just under £2,000 every single month."

Ben's mother said the family have been raising funds for the past year, but they are quickly running out of donations. 

For more information on the family's appeal, visit their Facebook page Help Ben Walk Without Pain.

The family also have a GoFundMe page for donations.

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