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Disabled children, young people and their families say they are waiting too long for mobility aids such as wheelchairs, in a CQC review of health care services for this group published yesterday.

The review presents the views and experiences of disabled children and their families as well as survey data from commissioners and acute hospitals about services provided from September 2009 to September 2010. 

Access to services for this group is variable across England, the review finds. For example, the national average wait for powered wheelchairs is three months but this ranges to over a year in some areas, according to information supplied by Primary Care Trusts (PCTs).

A national report and 151 local area reports explore how long disabled children and young people wait for wheelchairs as well as other critical services such as speech and language therapy (SALT) and physiotherapy.

The review also assesses the quality of support; for example whether children and young people have individual health action plans, whether PCTs involve families and children in the delivery of their care and whether families have access to short breaks. 

Families felt access to and involvement in services was a challenge and that they waited too long for access to services and for initial diagnosis, the review finds. 

Contributors to this review also felt services were not joined up and that different services did not work well together. Many disabled children and their families also reported they had not been consulted on how their care had been provided.

However, there appears to be significant disparity between the experiences of disabled children and their families, which is overwhelmingly negative, and the data supplied by primary care trusts, which shows high levels of access and user-centred care.

For example, around 50 percent of PCTs reported specialist services such as physiotherapy, speech and language and occupational therapy were always or almost always coordinated with other services and a high number of PCTs (62 percent) said they involved disabled children and their families in the training and evaluation of people delivering their care package.

Other survey data shows:

• The national average wait for a referral for community physiotherapy was seven weeks, with some children waiting up to six months
• The average wait for a referral to a community occupational therapist was 15 weeks with the wait ranging up to two years
• Average waits for manual wheelchairs were nine weeks ranging to over a year in some cases
• The average wait for a SALT referral was around 12 weeks – many waits ranged to eight months and one PCT reported waits of up to six years.

CQC head of operational improvement, Sue McMillan, said: “This review gives disabled children and their families the tools they need to hold their local commissioners to account.

“We were disappointed a proportion of PCTs were unable to provide the data we asked for and we’re calling on them to improve the information they hold. 

“It’s vital that commissioners know how many disabled children live in their areas and what the referral patterns and numbers are to the local services

“If commissioners don’t have information about the children and services they’re responsible for, how do they know they are meeting the needs of their communities?

“This vulnerable group often have complex and long-term specialist health needs and commissioners should be managing these needs better.”

Whizz-Kidz chief executive Ruth Owen said:

“We know there are an estimated 70,000 children in the UK who could benefit from the right mobility equipment. Providing a child the right wheelchair at the right time enhances their lives, giving them not just mobility but independence.

“In April, the Government's Any Qualified Provider policy will give young wheelchair users the choice to be referred to providers like Whizz-Kidz, which will help transform the lives of hundreds more children and young people in the UK who are waiting to receive the mobility equipment right for them.”

Notes for editors

• All disabilities were considered in this review, from learning disabilities to mental health, to those with sensory, communication and mobility needs.
• This review was based on the understanding that families with disabled children and young people need support to help manage their specialised health and other needs appropriately.
• The review was informed by the policy document Aiming High for Disabled Children which set out what good services should look like.
• In 2010, CQC commissioned research to find out about the experiences of children and young people who use specialist services. These 22 children had a wide range of long-term physical and learning disabilities and long-term complex health care needs. The Triangle Report contains this research and is on our website.
• In 2010, CQC collected the views disabled children, young people and their families and carers at SpeakOut groups, which aim to give those from marginalised communities a voice. The views and experiences of eighty-two individuals helped guide what data was collected from PCTs and acute trusts.
• The CQC then surveyed every PCT and acute trust in England in February 2011 about the services they provided between 2009 and 2010. More information about methodology is on our website.

For further information please contact the CQC press office on 0207 448 9401 or out of hours on 07917 232 143.

You can also contact Whizz-Kidz PR manager Rob Dyson on 020 7798 6103 or r.dyson@whizz-kidz.org.uk.

About the Care Quality Commission

The Care Quality Commission (CQC) is the independent regulator of health and social care in England. We make sure that care in hospitals, dental practices, ambulances, care homes, people’s own homes and elsewhere meets government standards of quality and safety – the standards anyone should expect whenever or wherever they receive care. We also protect the interests of vulnerable people, including those whose rights are restricted under the Mental Health Act.

We register services if they meet government standards, we make unannounced inspections of services – both on a regular basis and in response to concerns – and we carry out investigations into why care fails to improve. We continually monitor information from our inspections, from information we collect nationally and locally, and from the public, local groups, care workers and whistleblowers. We put the views, experiences, health and wellbeing of people who use services at the centre of our work and we have a range of powers we can use to take action if people are getting poor care.

About Whizz-Kidz

Whizz-Kidz helps young people access the right mobility equipment, including powered wheelchairs and delivers wheelchair skills-training, work placements, and other life-skills to help their transition from childhood to adulthood. Whizz-Kidz aims to work where possible with local NHS services, and aims to ensure that much-needed improvements are made in delivering wheelchair services for children in the UK.