Please help me, Mr Cameron

11-year-old with cerebral palsy delivers letter to 10 Downing Street after being denied NHS funding for physio to help him walk.

Ben Baddeley is currently undergoing treatment with a specialist which has helped him achieve his dream of walking without help. Until a year ago, the 11-year-old has to use a body brace and splints - and he became so easily tired he could barely walk up stairs or hold a pencil for long. He finally underwent an operation on his legs which relieved his muscle spasms, allowing him to walk unaided – but his family were forced to raise £11,400 to pay for it. Initially, the operation was on the NHS, but the hospital cut funding for the procedure five days before he was due to have it - after he had eagerly waited for two years. Afterwards, his family were dealt another financial blow when the health service refused to pay for any of Ben's rehabilitation, which costs nearly £2,000 a month. Despite tirelessly fundraising to support their son – who is overjoyed to be walking thanks to the treatment – they will soon run out of money, halting his progress. Ben decided to appeal to David Cameron, begging the NHS to fund his physiotherapy, so he can continue learning to walk, ride his bike and eventually achieve his dream of beating his brother at football. In a letter he delivered to No 10 Downing Street on May 4, he said: ‘I see three different types of doctors who my mum and dad pay for me to see by fundraising. 'They all tell me that I’m doing well and I’ve learned to walk upstairs on my own. 'If the doctors I see now have decided that my treatment Is working shouldn’t that mean that I should get my treatment by the NHS?' He added: 'My mum and dad speak to the NHS all the time but I’m still not getting help and none of the other kids are either. 'I’m not the only child with cp [cerebral palsy] having this problem. 'Please can you help us Mr Cameron? We all need the NHS, so please can you fix it?' Ben has previously written to Mr Cameron before asking for help, but said the letter he received in return did not answer his questions. In the last letter, he wrote: ‘We are always busy fundraising so we miss out on family time quite a lot, and that’s a bit sad for us. ‘I really hope you get my letter and I really hope you will help me.’ Mr Cameron said Ben’s local clinical commissioning group (CCG), NHS North Staffordshire, has offered to discuss the best way he can access physiotherapy through NHS funding. Currently, the family and Ben's doctors have sent a specific funding request to the CCG, and are waiting to hear if it will be successful. Until recently, treatment for cerebral palsy was limited to physiotherapy, orthopaedic surgery and Botox injections to provide temporary relief from muscle tightness and spasms. But in 2012 Ben was told he was eligible for a Selective Dorsal Rhizotomy (SDR) operation, which involves opening up the lower spine and cutting the sensory nerves to reduce the tightness permanently. This can help improve movement, balance and posture, and can reduce painful spasms. US research suggests SDR can produce more dramatic improvements, helping children gain new movement in their legs, and even walk unaided for the first time.
NHS England is currently evaluating the procedure, funding 120 cases a year at five specialist centres including Great Ormond Street. Ben was one of such cases, and ahead of the surgery at Queen’s Medical Centre in Nottingham, he underwent an hour-long MRI scan under general anaesthetic and had stopped the regular Botox injections that eases his muscle stiffness. But in 2014 his dream was shattered when the NHS cancelling the operation just weeks before it was due, blaming 'funding issues'. Ben’s pre-operation baclofen procedure, which helps with muscle spasms, had been booked but because his final surgery had not been scheduled, the trust cancelled the first procedure. This left him heartbroken, as his family would have to foot a £11,400 bill for the procedure and the main operation on the nerves in his spine. The family began asking for donations, and managed to raise £3,000 themselves through raffles and other events. Then, miraculously, a person came forward to pay the rest anonymously - leaving the family 'gobsmacked'. Ben had the operation, in which doctors took out vertebrae from his back and severed a few nerves, which took away the tightness in his lower legs. But having never walked without splints before, he needed specialist physiotherapy to re-learn to walk and build up his muscles. The NHS told the family it classed his operation as private, meaning it wouldn't pay for his rehabilitation. 'Ben has never walked, he’s had no muscle tone in his feet,' Ben's father Gary told MailOnline at the time. 'Nothings been working for 11 years, he's got to have it all woken up. 'We had to pay for physiotherapy and all the therapists who specialise on SDR children are all close to the hospitals that do the operation - there are only five in the country that do it. 'Its working out £2,000 a month, £150 a session, three times a week, and travel costs.' Mr Baddeley, who works at Bentley motors, began taking on as much overtime as possible. He and his wife also re-launched their fundraising campaign, putting up leaflets about Ben's condition in local shops and asking businesses for prizes for raffles. But despite the physiotherapy helping him to walk - the family have run out of money and desperately need the NHS' help. Now, his mother says his letter to the Prime Minister is a last-ditch plea for help. She told MailOnline: 'Ben has written to the PM asking for help and answers. 'The Government pulled the funding on Ben's treatment. If we had not found the funds Ben would be in a wheelchair unable to walk or write. 'Ironically, Ben had his surgery because an anonymous donor paid the NHS. 'Now Ben can write he is using his skill to ask the Government why they wouldn't and still won't help him.' MailOnline has approached NHS North Staffordshire and No 10 Downing Street for comment.
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