Children denied pioneering surgery to help them walk

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Like millions of other parents, Grace Shiers’ mum and dad were looking forward to their daughter’s first steps.

But unlike most children, this wasn’t so easy for the four-year-old.

Dave and Katy Shiers with their daughter Grace.'' ''Picture: Allan Hutchings (14187-890)

Dave and Katy Shiers with their daughter Grace.'' ''Picture: Allan Hutchings (14187-890)

She was born prematurely at 26 weeks, and her parents Katy and David, both 28, of Titus Gardens, Waterlooville, noticed problems in her development.

Eventually Grace was diagnosed with cerebral palsy, which affects her ability to walk.

There is a procedure available to help Grace, and children like her, to walk – but currently it is not funded by the NHS.

It means scores of families are having to raise more than £40,000 to pay for the procedure privately.

The Shiers are trying to raise £65,000 to pay for the operation, which is called selective dorsal rhizotomy (SDR).

David, a self-employed artist, says: ‘We have found the situation with the NHS really frustrating. It took us ages to get a diagnosis, and when we did, we were not told about the procedure.

‘We were told Grace needs intensive physio once a week, but even that didn’t happen.

‘It means we have to pay £100 a session, and sometimes more if she needs more intense physio.

‘We need to keep her moving, so her leg muscles stay strong.’

The aim of SDR is to ease muscle spasticity and improve mobility in people with cerebral palsy.

It involves cutting nerves in the lower spine that are responsible for muscle rigidity.

It’s a procedure the Shiers think will hugely benefit Grace – but one that will cost them a lot financially.

‘She is very intelligent, and we don’t want to take that away from her,’ says David.

‘But we need to help her with everything, from toileting, to walking, to getting out and about.

‘We have had to sell our house, and move to a rented bungalow, as Grace struggles with stairs.

‘My wife has had to give up her career, in order to care for Grace, and I am now self-employed, so I can be around to help.

‘Grace goes to Castle Primary School, in Portchester, and we have to drive 12 miles every day, which adds another cost.

‘But we cannot afford to live any closer.

‘Alongside her therapy, Grace needs a special bike.

‘We got one second-hand, but even that cost £3,000.

‘And she’s still like any other child, and loves to have new toys and games.

‘We are always living on our last pound, and it does put a strain on our relationship.’

However the family want Grace to have the procedure, as they believe it will benefit her in the long run.

David says: ‘The NHS doesn’t see how hard it is for the parents.

‘The procedure costs quite a bit – about £40,000 – but it would mean Grace could be more independent.

‘We need to raise the extra money for her physio and aftercare, which is just as important.

‘It means she wouldn’t be on benefits later on, and give her confidence.

‘She can crawl around the house, but we want her to be able to walk.

‘As we have to pay, we are raising £65,000, so we can go to St Louis hospital, in Missouri, USA, where the procedure was pioneered.

‘If we need to pay, we may as well go to the best place.’

The NHS says it does not fund the operation, because it believes there is not enough evidence of its cost-effectiveness.

A spokesperson for NHS England South says: ‘We sympathise with families who feel they may benefit from this treatment.

‘However SDR is not routinely funded by the NHS as the current evidence base does not yet demonstrate sufficient clinical and cost-effectiveness for its routine use.’

But the NHS said it will be reviewing the procedure this.

The spokesperson adds: ‘It has been identified by clinicians and patient representatives as showing significant “promise” as a potential treatment option for the future and forms part of the Commissioning through Evaluation programme.

‘The programme, which was originally developed with clinicians treating heart conditions, will enable SDR, and other appropriate services and/or treatments, to be funded within defined parameters, in a small number of participating centres, and within an explicit evaluation programme.

‘Working with patients and lead clinicians, this will give us more information to help determine whether SDR should be made available in the future.’

To support Grace, visit graces-goal.org.uk

THERE are some hospitals in England that provide the specialist surgery privately.

Sophia-Rose Cook was born seven weeks early, after which her lungs collapsed twice and she spent time recovering from that.

At 20 months she was diagnosed as having spastic diplegia – a form of cerebral palsy.

The three-year-old’s family is raising £40,000 so she can have SDR at a hospital in Bristol.

At the moment it is done at the Frenchay Hospital, and there are plans to move it to the Bristol Royal Hospital for Children, at the end of April.

For this reason, mother Juliette Cook, 20, of Farmside Garden, Hilsea, has not yet been given a date.

She says: ‘We have been lucky, as Sophia-Rose matched the criteria to have the operation in the UK.

‘She can walk a little, which means they have something to work on.

‘We have raised about £19,000 so far – including getting a £10,000 donation from a charity.

‘She gets so much pain in her legs that we want it to ease that.’

Sophia-Rose goes to the Rainbow Centre, in Fareham, but gets frustrated when she can’t join in with all the activities.

Juliette adds: ‘We want to give her the most independence we can, and at the moment she doesn’t have that.

‘At the moment she notices she can’t do everything her friends can do.

‘She gets so much pain, she says the “leg monsters” are getting her.

‘That’s because of her leg muscles, and if that can be reduced, then it would help her so much.’

To make a donation for the surgery, visit justgiving.com/jvc9

WITHOUT a doubt surgery to relieve pressure on leg muscles has benefited a seven-year-old with cerebral palsy.

Sam Deakin-Mant had the SDR procedure in America in June last year.

And since then, his mother Lisa Deakin, 44, of, St Matthew’s Road, Cosham, said there has been a massive change.

She says: ‘We are only seven months down the line, but we have noticed changes.

‘Within two weeks Sam was able to sleep through the night, something he couldn’t do before because of the pain and discomfort.

‘His posture is so much better.

‘Before, when he sat in a wheelchair, he would need to be strapped in.

‘But now he has better core strength he has improved greatly, and he can push himself around.

‘He’s also able to walk with a walker – that’s something he couldn’t do before either.

‘He can push himself in his wheelchair, and then pull himself on to his walker. And he can use the toilet alone.’

Sam still needs to have physio to help his muscles.

Lisa adds: ‘We raised £40,000 for the operation, but we are constantly fundraising to pay for the aftercare.

‘I think for that reason, the NHS can’t afford to fund the procedure.

‘If you have the surgery alone, it will help with discomfort and pain relief.

‘But for long-term benefits, you need to keep the physio going, and that can cost hundreds of pounds each time.’