Children and young people with disabilities are waiting too long for services according to a report from care regulator the Care Quality Commission (CQC).

Access to services is variable across England, the report found. Some children had to wait months or even years for such things as manual wheelchairs or speech and language therapy (SALT), even though the average waiting time was only weeks, according to information supplied by primary care trusts (PCTs). The review focused on families that have children under the age of 19 with any form of disability, including a learning disability or an autistic spectrum disorder. In addition, the review found that 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.  Contributors 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, while the experiences of disabled children and their families was overwhelmingly negative the data supplied by PCTs showed high levels of access and user-centred care. For example, about 50% of PCTs reported specialist services such as physiotherapy, speech and language and occupational therapy were always or almost always coordinated with other services and 62% said they involved disabled children and their families in the training and evaluation of people delivering their care package.

Other findings included:

  • The national average wait for a referral for communityphysiotherapy was 7 weeks, with some children waiting up to 6months
  • The average wait for a referral to a community occupationaltherapist was 15 weeks but this ranged up to 2 years
  • Average waits for manual wheelchairs were 9 weeks ranging tomore than a year
  • The average wait for a SALT referral was around 12 weeks - manywaits ranged to 8 months and one PCT reported waits of up to 6years.

Sue McMillan, the CQC's head of operational improvement, said:

"This review gives disabled children and their families the tools they need to hold their local commissioners to account. "We weredisappointed 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 haveinformation 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 andlong-term specialist health needs and commissioners should bemanaging these needs better." 

Ruth Owen, chief executive of charity and mobility equipment provider Whizz-Kidz, 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."