David, now 17, had to wait almost four months for an ankle foot orthosis
A wasted operation which left her son David unable to walk was what spurred on Rebecca Loo to make a difference to the NHS.
“I was livid. I was so consumed by anger. I thought either I have a nervous breakdown, or I do something,” says Rebecca, from Staffordshire.
She is only one of 300,000 people who got in touch with Healthwatch England, an independent health watchdog, to share their experiences of NHS treatment.
Rebecca’s disgust with the orthotics service which failed her son has led to a total redesign of how children access braces, boots and callipers to help their mobility.
As a result of her hard work, children right across England are no longer facing the sort of delays which affected her son.
Crucially, NHS England believes the changes have the potential to save hospitals up to £22 million.
Because of muscle abnormalities resulting from cerebral palsy, which left his foot turned inwards, David had needed to wear special, supportive NHS boots to help him walk.
But they were usually ill-fitting, and often so delayed that he had outgrown them by the time he got them – or only a few months later.
David then endured blisters, chaffing and bleeding toes while new boots were made.
In 2009, an orthopaedic surgeon recommended serial casting to set David’s foot straight.
David was left immobile and unable to go to school
Immediately after surgery he should have been fitted with an ankle foot orthosis – a brace that keeps the ankle and foot straight – but it took 17 weeks to arrive and, within days of the operation, her son was immobile.
The knock-on effect for nine-year-old David was huge, both in terms of his physical development and his emotional well-being. He missed school for four months because he couldn’t access his classroom on the top floor. He was upset and in pain.
“We weren’t just back at square one, we were worse than when we started,” Rebecca told BBC News.
David later had to undergo complex surgery that Rebecca believes would have been unnecessary if her local orthotics department had worked as it should have done.
And it turned out Rebecca’s experience was not unique. She spoke to many other parents who had endured similar experiences – but nothing had been done to improve the system.
Together, they created a dossier of evidence cataloguing the woeful state of her local orthotics department.
Rebecca Loo’s son’s wait meant surgery ultimately had to be done again
“Nobody cared who was in charge; nobody had looked at how the service was commissioned,” explains Rebecca. “The service was neglected and underfunded.”
Healthwatch England has launched #ItStartsWithYou to highlight the difference patient feedback can make.
The campaign is encouraging members of the public to share their experiences of the NHS – good or bad – to help improve how things are done.
Imelda Redmond, national director of Healthwatch England, said the NHS was “increasingly keen to find out what people are feeding back”.
“It can help the whole health and care sector understand what it is getting right and where things need to improve.
“I urge everyone to speak up and help us make the changes we all want to see,” she said.
‘Listen to patients’
Rebecca’s feedback ultimately changed the way services were commissioned – not only in Staffordshire but across England. And in 2014, those processes were rolled out nationally.
“To have not acted would have been to accept defeat,” says Rebecca. “I didn’t want another family to go through what we did.
“Unless you listen to patients, you can’t have a service that meets needs.”
George Rook’s input on dementia treatment has helped improve local health and social care services
George Rook wanted to share his first-hand experience of being diagnosed with dementia, which has now led to the creation of two “dementia cafes” in Shropshire.
After struggling with his own diagnosis, George, 63, has spent the past four years working with local doctors to help improve the way they identify and support people with early symptoms of the disease.
Working with his local Healthwatch, George has helped local GP surgeries to become “dementia friendly” and set up a programme to recruit local dementia champions.
He has also been instrumental in establishing the Butterfly Scheme, which sees medical staff pinning a butterfly to people’s notes to enable others to quickly and discreetly see that they have dementia.