A CQC Special Review looked at the support available for families with children that have a disability.

This review focused on families that have children under the age of 19 with various disabilities. In particular, this review looked at:

• The availability of specialist health services for disabled children and young people and their families.
• An assessment of the quality of support in a geographical area linked to primary care trusts (PCTs).
• The ‘building blocks’ of the care pathway that are of particular importance to families.

Findings from the review included:

• 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.
• Families with disabled children say they are waiting too long for mobility aids such as wheelchairs.

CQC found significant disparity between the experiences of disabled children and their families, which were overwhelmingly negative compared to the data supplied by primary care trusts, which showed high levels of access and user-centred care.

Read in full HERE