DESPITE a lifetime of disability, inspirational Southampton teenager Cariad Howat is a medical success story.

The 15-year-old has spinal muscular atrophy but has exceeded her initial life expectancy and is now the oldest child in the UK with her condition.

But she has to sit in a reclined position - and for nearly two years was without a suitable wheelchair.

Until recently her family was locked in a battle with the company that provides wheelchairs for the NHS in Southampton and say it failed to take Cariad’s needs seriously.

Her problems began in June 2017 when part of her wheelchair snapped.

Daily Echo:

Cariad was already outgrowing the chair and was told she needed a new one but, according to her father Jeremy, Totton-based Millbrook Healthcare simply welded the faulty part back on and returned it.

When it broke again, he says, the company offered Cariad an unsuitable replacement before leaving her without a chair at all for eight weeks.

Jeremy told the Bureau of Investigative Journalism: “I have a legal requirement to send my daughter to school. There could be a million reasons why she cannot attend but a wheelchair shouldn’t be one of them.”

Cariad, of Thornhill, was eventually provided with a new chair but it lacked key features – including the ability to recline.

Her father said it “bounced all over the place” during car journeys, adding: “We had to use the special bed elevators when we went for a hospital appointment because the chair they’d provided wouldn’t fit in the lift.”

After waiting almost two years Cariad finally received a brand new chair with all the necessary components in January this year.

However, her experience is not a one-off.

Daily Echo:

Millbrook provides wheelchair services for 28 Clinical Commissioning Groups (CCGs) serving more than 115,000 people with spinal injuries or life-changing disabilities. But in the past two years 50% of patients in Southampton waited more than 18 weeks for a chair.

The Bureau is aware of complaints in other areas where Millbrook operate including Kent and Medway, where campaigners say the company should be stripped of its contract.

A representative from the Kent Wheelchair Users’ Group described the service as “worse now than it’s ever been in the 56 years I’ve used it”.

Wheelchair-user Lucy Hudson, 24, who also lives in Kent, described her experience with Millbrook as “horrific.”

Lucy said her problems started when she had to wait eight months for the joystick controller on her electric powerchair to be repaired. The batteries on her chair began to deplete but replacements took more than a month to arrive, leaving Lucy housebound for weeks.

Other cases include two patients in Portsmouth and West Hampshire, both of whom had to wait more than two years for equipment.

Rob Burley, director of campaigns, care and support at Muscular Dystrophy UK, said: “Wheelchairs are essential for disabled people to live independently, whether that’s going to work, out to meet friends, or simply to the shops.

“But there are substantial gaps in provision and many disabled people don’t have access to the basic equipment they need.

“Far too often we hear from people who cannot leave their homes due to delays, or are forced to buy expensive wheelchairs themselves.”

Dr Hannah Barham-Brown added: “Wheelchairs are more than simply a piece of equipment they are a lifeline - a lifeline that saves people from being prisoners in their own homes.

“Systems which allow companies to take up contracts and let down patients are clearly not fit for purpose.”

A report published by Healthwatch Hampshire in 2016 referred to a contract Millbrook was awarded two years earlier, adding that the company identified issues “very early on” and spoke to West Hampshire CCG.

It added: “This resulted in a system of triaging all cases…and has meant the service has had to be reactive instead of proactive.”

The report said Millbrook initially based the number of staff required on information provided during the tendering process, but demand for the service was double the initial estimate.

After two years more than 650 people were still waiting to be assessed, it said.

Based at Nutsey Lane, Calmore, Millbrook Healthcare describes itself as an independent family-owned business which specialises in providing patients with high-quality equipment, including wheelchairs.

Millbrook’s website says: “We maintain exceptionally high levels of customer satisfaction and with 96% of our customer surveys rating our service as good/excellent.”

A company spokesperson said demand for wheelchair services greatly exceeded that which CCGs were able to pay for.

Referring to examples cited by the Bureau the spokesperson said the company “had inherited contracts with significant undeclared waiting lists from previous providers, often with shortfalls in ongoing funding to meet increasing demands upon the service.

“Transitioning from one provider to another is often challenging

“We are working closely with individual service users and their representatives to address the feedback we have received.

“We are having detailed discussions with commissioners around eligibility criteria specifically and service improvement more generally.”

The spokesperson said all wheelchair patients were “triaged and prioritised, based on clinical need”.