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New Learning Disability Census: deadline approaches for mandatory submissions

October 04, 2013: NHS and independent organisations providing inpatient care for people with learning disabilities are reminded they must submit data for a new, mandatory census by October 15.

Any provider registered with the Care Quality Commission (CQC) to provide such services must submit data to the Health and Social Care Information Centre (HSCIC), which is leading on collection and analysis for the Learning Disability Census.

The census was commissioned following a review into care at Winterbourne View2, which has resulted in a programme of work involving the HSCIC, Department of Health, CQC and Public Health England.

The programme is aimed at addressing poor and inappropriate care and achieving the best outcomes for people with a learning disability, or autism, who may also have mental health needs or behaviour that challenges.

Intended to provide a snapshot of care provision for people with a learning disability and help identify any quality issues, the census must be completed for all eligible patients who occupied an in-patient bed at midnight on 30 September 2013.

It includes questions about:

  • How many people with learning disabilities are currently in hospital placements
  • Whether they are receiving care close to home
  • Reasons for their placement in hospital
  • Medication they are receiving
  • Who, if anyone, in their home locality is currently responsible for care planning from both a health and social care perspective

HSCIC chair Kingsley Manning said: "It is mandatory for providers to submit this information via the new census, which cannot be underestimated in terms of its importance.

"The HSCIC is at the heart of the drive towards improving health and social care services, by providing high quality information that is essential to understanding activity, provision and quality of care. However in order to maximise the potential power of information to transform care, providers must also be committed to the process of data submission.

"I would urge organisations involved with the Learning Disability Census to submit their data to us ahead of the fast-approaching deadline and to seek support from our surveys team if they need any help with this process."

CQC Special Policy Lead Alan Rosenbach said: "One of the commitments in the Winterbourne View Review was to make sure that we collectively are able to identify the number of patients in NHS and Independent Hospitals, how long they had been in those settings and where they have been referred from.

"The significance of this work to the partners who have signed the Concordat is immense. We will be reporting in the first instance to the Minister on those registered services who have uploaded their data, those who have not and information on the quality of the data."

For guidance on how to complete the census, which will be published in anonymised form in December 2013 and repeated in September 2014, please visit: or contact:


Notes to editors

1. The Health and Social Care Information Centre (HSCIC) was established on April 1 2013 as an Executive Non Departmental Public Body (ENDPB). It is England's trusted data source, delivering high quality information and IT systems to drive better patient services, care and outcomes. Its work includes publishing more than 130 statistical publications annually; providing a range of specialist data services; managing informatics projects and programmes and developing and assuring national systems against appropriate contractual, clinical safety and information standards.

2. The Department of Health (DH) report: Transforming Care: A national response to Winterbourne View Hospital and the Concordat: Programme of Action, indicated failings were widespread at Winterbourne View but also evident across the wider care system. The report is at:

3. For media enquiries or interview requests please contact the press office on 0845 257 6990 or

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