CQC issues damning report on disabled children’s health services

22 March 2012

Campaigners call for a swift response

For media enquires please contact Laura Courtney, EDCM Campaign Manager:

(T)     9am - 5.30pm: 020 7843 6448 or 07949749754
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The Every Disabled Child Matters campaign (EDCM) has raised concerns at the findings of a Care Quality Commission (CQC) report published today (Thursday 22nd March) on 'Healthcare for disabled children and young people'.

In response to a self assessment questionnaire, PCTs reported 'high levels of access and user-centred care'. However, this is at odds with highly negative comments from families with disabled children. These comments reveal extremely long waits for diagnosis, disjointed provision and lack of responsiveness when things go wrong:

•    "First of all they wouldn't give us a diagnosis - It took 4 years constantly struggling to get one - then they discharged my son. Once they discharged him we couldn't get back in and couldn't access services - it's just ludicrous - we are not getting any support from anyone."

•    "We have found them to be very disjointed with often the left hand not even knowing what the left hand is doing! This only works to increase the burden on parents. My son was promised provision that never came; then staff were off sick; the litany goes on forever."

•     "At every stage we have had to fight for services - at one time even threatening legal action until we got our way. The whole process has been physically, emotionally and financially draining."

Even more worrying was the fact that PCTs demonstrated an extremely worrying lack of awareness of the needs of local disabled children:

•    Five PCTs claimed that no disabled children and young people lived in their area

•    Fifty five PCTs did not monitor whether services allocated as a result of Common Assessment Framework were delivered

•    Sixty three PCTs didn't know how many children were referred for manual wheelchairs and nine said children were waiting over 51 weeks for wheelchairs

•    Fifteen PCTs said they didn't provide short breaks services

Despite this, the CQC does not recommend any intervention to improve the experiences of disabled children. It simply concludes that the report 'adds to the information and debate about what needs to be tackled to provide better services to families with a disabled child or young person'.

EDCM Board Member David Congdon said: "We are extremely concerned by the damning findings of this report. It is clear that many PCTs are not aware of the basic needs of local disabled children. We urge the Secretary of State for Health to respond swiftly to reassure the public that action will be taken to make sure disabled children are able to access vital services."

Mr Congdon went on to say: "We are particularly concerned that disabled children's services are only subject to review by the CQC in the form of a self assessment questionnaire, qualitative research and literature review. This report demonstrates that this approach is inadequate in monitoring the delivery of services that disabled children actually experience and will leave families with little confidence in the CQC. We recommend that CQC undertakes regular, robust monitoring of health services for disabled children and young people. This monitoring process should be created in partnership with disabled children, young people and parents."

-ENDS-

Notes to Editors

1.    Every Disabled Child Matters is the national campaign to get rights and justice for every disabled child. It is run by four leading organisations working with disabled children and their families: Contact a Family, Council for Disabled Children, Mencap and the Special Educational Consortium.   Find out more at www.edcm.org.uk

2.    The Care Quality Commission (CQC) is the independent regulator of all health and social care services in England. The job is to make sure that health care services meet Government standards of quality and safety. When standards are not being met, they can use their powers to: issue fines or warnings; stop admissions into a care service; suspend or cancel a care service's registration. http://www.cqc.org.uk/

3.    The CQC report 'Healthcare for disabled children and young people' can be found http://www.cqc.org.uk/public/reports-surveys-and-reviews/reviews-and-studies/support-families-disabled-children