At last! Help for children left in agony by NHS shoe shambles


By
Jane Feinmann

19:25 EST, 22 April 2013

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21:10 EST, 22 April 2013

Back in the game: David Loo wears a support inside a special orthopaedic boot so he can play sports

Back in the game: David Loo wears a support inside a special orthopaedic boot so he can play sports

David Loo’s health, happiness and mobility depend largely on a well-fitting piece of plastic that looks rather like a wellington boot with the front missing.

The 13-year-old from Newcastle-under-Lyme, Staffordshire, was born with hemiplegia, a form of cerebral palsy that severely weakened the right side of his body.

Without the plastic support (known as an ankle foot orthosis), David’s right foot and ankle turn inward, forcing him to walk painfully on the side of his foot. When he’s without this support, he has to use a wheelchair.

Wearing the support inside a special orthopaedic boot holds David’s foot and ankle in place so he can play football and basketball, climb stairs and be almost fully mobile. ‘Unless you look closely, you won’t know he has a disability,’ says David’s mother Rebecca, 41, an occupational therapist.

Like all children, David needs new footwear every nine months or so because his feet are growing. His splint and boots have to be fitted by an orthotist before being ordered and made by an outside manufacturer, then fitted again.

It’s a complicated, time-consuming process that demands high levels of efficiency to ensure a speedy turnaround. Yet the problem — as many of the million or so Britons who rely on prescription orthotics are all too aware — is that the service is patchy and frequently poorly run.

Every £1 spent on orthotic devices saves the NHS £4 by preventing further disability. But for more than 20 years, national reports have lambasted NHS orthotic services as ‘almost entirely lacking management and strategic planning’, as a Department of Health study concluded back in 1992.

Last year, Arthritis Research UK found that three out of four patients were ‘very unhappy’ with the time it took to receive an orthotic device. Five out of six had problems with the device once it was delivered, with many complaining that it didn’t fit.

The problem is particularly bad for children, according to Dr Anita Williams of Salford University, author of a 2001 report entitled Shoes in the Cupboard: The Fate of Prescribed Footwear.

‘They end up without proper footwear if the service doesn’t work properly,’ she says.

For David Loo, this meant he was frequently stuck in a wheelchair because his boots hadn’t been delivered — on one occasion, when he was eight, he had to be carried around on his mother’s hip for nearly a week.

David was being treated by the orthotics service at the University Hospital of North Staffordshire — where lengthy delays with fitting, ordering and manufacturing the new footwear were standard, with time lags of weeks or even months.

‘It was appalling,’ says Rebecca. ‘By the time David was nine, four pairs of boots had gone into  clinical waste because he’d outgrown them by the time they were ready.’

The situation reached crisis point in 2009. For three months David, then nine, had undergone an arduous treatment known as ‘serial casting’, where his deformed foot was slowly straightened by forcing it every two weeks into a regularly adjusted plaster cast.

After this process, a new ankle foot orthosis was essential to maintain the good shape, as his foot had been weakened — but staff forgot to order it.

‘We had to start from the beginning — waiting three weeks for an appointment to get his feet measured, nearly two months for the orthotic to be made and further delays for a fitting,’ recalls Rebecca. ‘It was finally fitted 17 weeks after his plaster came off.

‘By then he’d lost all the benefit of the casting and his foot was bending over badly, and rocking and forth so much he got friction burns. He was screaming in agony and eventually became wheelchair-bound.’

David with his parents. He had been frequently confined to a wheelchair because his boots hadn't been delivered

David with his parents. He had been frequently confined to a wheelchair because his boots hadn’t been delivered

There are plenty of similar stories. Jackie Griffiths’s daughter Tilly, now 13, was born with spinal muscular atrophy, causing spinal paralysis as well as her hands and feet to turn inwards if she doesn’t wear orthotic splints on her wrists and ankles all day, and softer padded splints at night.

‘People wonder why we get so upset by these delays — after all, you can’t die of a turned-in foot,’ says Jackie, who owns a BB in  Cheddleton, North Staffordshire.

‘But during those weeks we have to decide whether to force the child to wear devices that are too small, that hurt so much it makes them cry — or leave the orthotics off and risk their hands and feet bending inwards permanently.’

She recalls waiting for one appointment, then finding that two left splints had been delivered to the hospital. No one had checked.

Conor Lawton, 12, plays for Aston Villa Marvels cerebral palsy team when he has his ankle foot orthosis.  But in 2009 he broke it and waited three months for a new one. By then he was in pain and his foot was turning over.

‘Once it had been delivered to the hospital, he had to wait two weeks for an appointment,’ says his mother Cath.

Like others, Rebecca complained about the delays, but University Hospital insisted that at worst, minor staffing difficulties meant ‘a small number of patients experienced a delay’. So, driven by frustration, two-and-a-half years ago Rebecca set up the North Stafford Orthotic Campaign to try to force the service to improve. Then, in April 2011, everything changed.

That’s when the hospital came under management of the new North Staffordshire Clinical Commissioning Group (CCG) — this was the first phase of the NHS reform that went national at the beginning of this month.

It means that instead of being managed by hospital trusts, healthcare services are commissioned by GPs for their patients.

The North Staffs CCG has involved patients in its decision-making. When Rebecca asked to meet the chief executive of the hospital in May 2011, the new CCG commissioned an external ‘evidence-based’ review of the orthotics service, with patients and relatives providing evidence.

It found that the hospital didn’t have a clue how many people needed orthotic devices; it also described ‘inefficiencies’ in placing orders, delivering and fitting the devices.

A new purpose-built clinic at the Haywood Community Hospital in Stoke-on-Trent was built to house the orthotic staff in a single unit under one management.

‘Cutting out the inefficiencies and waste of the old system means extra funding hasn’t been necessary,’ says Gemma Smith, the CCG’s commissioning manager. 

A new appointment system guarantees that patients see an orthotist within three days. Staff must place orders for devices and boots within 24 hours of a fitting, and a new ordering system guarantees an agreed delivery time with manufacturers.

There has already been a great improvement, says Jackie.

‘When the orthotist noticed Tilly’s wrist was deviating slightly, he immediately called in a technician to adjust the splint rather than having to send it away to be adjusted. I was reeling in shock — it was wonderful.’

Such transformations are needed for ‘a wide range of Cinderella services within the NHS’, says Jeremy Taylor, of National Voices, a charity representing patients in healthcare.

Whether the experience of the North Staffordshire orthosis campaigners will prove to be a model for the newly reformed NHS remains to be seen.

‘The success of this collaboration is largely down to the parents being extremely knowledgeable and passionate,’ says Sally Parkin.

Adds Jackie: ‘We still meet regularly with the CCG. We have gone from being completely powerless to having a voice.’

North Staffs Orthotics Campaign: nsoc.org.uk.

 

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