Unbelievably, there are an estimated 70,000 disabled children in the UK whose physical mobility needs, and subsequently their ability to develop skills needed for adulthood, are not being met.

Historically the delivery of wheelchair services has suffered from delays and received little attention among health commissioners. Right now, we know that wheelchair services are not often focused on providing mobility equipment that will give users independence.

Families that use the services of children’s mobility charity Whizz-Kidz say their wheelchair services are applying eligibility criteria differently and inconsistently across the country. As a result, many disabled children and young people sit on waiting lists without any equipment or with an ill-fitting wheelchair for far too long. This is before they reach adolescence and adulthood, effectively curbing their chances to reach their potential before they’ve had a chance to even dream it.

To add to this, contract specifications for wheelchairs are being pulled together based on minimal data and limited by budgets which are not reviewed against the actual historical need – and cannot account for the unmet need. All of this creates a perfect storm resulting in poor-quality services that are having an adverse impact on health outcomes for young disabled people and adults across the country.

Commissioners have a vital role to play in improving the lives of disabled people by ensuring they get the appropriate mobility equipment they need quickly and easily to live active and independent lives.

As Dr Steve Kell, co-chair of NHS Clinial Commissioners and chair of Bassetlaw Clinical Commissioning Group, puts it: “It is time the NHS recognised the vital role of wheelchair commissioning and provided timely, appropriate wheelchairs to people who need them to remain mobile and independent.”

The NHS England Wheelchair Summit in February revealed far too many stories of children and adults who had been let down by a complex system that has not received enough focus among commissioners. CCGs, as local, clinically-led organisations close to patients, have an opportunity to put this right, and this piece of work highlights some of the issues and solutions to ensure we deliver for our patients.

We know that there are a range of long-term health and economic benefits to providing appropriate mobility equipment and that the NHS is losing out on major cost savings by working inefficiently in this area. For example, the right wheelchair can prevent disabled children and adults from developing pressure sores. It could potentially save hospitalisation at a cost on average of £4,000 to the NHS, and even spinal surgery that can carry a cost of £40,000.

But make no mistake, we are confident that the NHS has the collective will – and the potential for innovation – to change the current picture. We applaud the work of former NHS England chief executive Sir David Nicholson in this area, and welcome the appointment of NHS commissioning director Rosamond Roughton to champion wheelchair services, and Helen Bevan as chief of service transformation at the NHS Institute for Innovation and Improvement.

Heeding the voices of patients – the customers – is paramount to bringing about lasting, sustainable change for wheelchair users in this country.

With the launch of iWantGreatCare in 2008 and platforms like it, there are greater opportunities for the healthcare customer – just as there are in the consumer and tourism markets – to play a role in driving improvements to services.

iWantGreatCare now includes the ability to rate and review wheelchair services, whether delivered by the NHS or non-profits like Whizz-Kidz. This gives wheelchair users – for the first time – the chance to have their say, celebrate and share best practice and also draw attention to slow or unresponsive NHS wheelchair services.

We believe that listening to customers’ voices is vital in order to bring a strong evidence base of experiences to health commissioners and government. It’s time to hear the previously unheard voices of wheelchair users and their families, so that they themselves can drive the changes so desperately vital to transforming many more lives.

Lives like wheelchair users such as 19-year-old George Fielding, who has cerebral palsy and is Whizz-Kidz’s youth board chair, and who has been presented with a British Empire Medal for the voluntary work he does for other young disabled people and their families. And 28-year-old Arunima who, thanks to receiving the right powered wheelchair for her needs, is living independently in London and working as a lawyer. Both these young people had their wheelchairs provided privately (by a charity), after being unable to get what they needed from their respective local wheelchair services.

By putting the voices and opinion of patients at the heart of the NHS, and making them the cornerstone of everything we do, the NHS has a huge opportunity to set a global standard in healthcare transparency. We urge wheelchair users to have their say so that we can join the dots in our disparate wheelchair services – and demand one way of commissioning that affords every disabled child the chance to reach their potential and contribute to society.

Dr Ruth Owen OBE is chief executive of Whizz-Kidz and Dr Neil Bacon is founder of Doctors.net.uk and iWantGreatCare.org.

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