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This report presents initial findings from the 2013 Learning Disability Census. Data were collected via the Health and Social Care Information Centre (HSCIC) on behalf of the Department of Health, the Care Quality Commission, Public Health England and NHS England.
The principal aim of the Census is to deliver action 17 in 'Transforming Care: A national response to Winterbourne View Hospital - "an audit of current services for people with challenging behaviour to take a snapshot of provision, numbers of out of area placements and lengths of stay".
The Learning Disability Census provides an individual record-level snapshot of inpatients with learning disabilities, autistic spectrum disorder and/or behaviour that challenges, and the services they receive, for service users who were inpatients in NHS and independent services at midnight on 30 September 2013. The census will be re-run on 30 September 2014.
Responses from 104 provider organisations were received on behalf of 3,250 service users who met the inclusion criteria for the 2013 Learning Disability Census:
Around three in four service users (74.6 per cent) were male and one in four (25.4 per cent) were female. Most service users (2,994 or 92.1 per cent) were adults of working age (18-64); few (185 or 5.7 per cent) were aged under 18 and very few (71 or 2.2 percent) were aged 65 and over. The ethnic group composition of service users was broadly in line with the general population of England1
Six in ten service users (60.0 per cent or 1,949) had been inpatients for a year or more and around one in six (17.6 per cent or 572) had been inpatients for five years or more. Inpatients admitted in the three months before the Census comprised about a fifth of all service users (18.5 per cent or 601 people). Length of inpatient stay varied with age:
- Service users aged under 18 were proportionally more likely to have been inpatients for three months or less (45.4 per cent or 84) than service users overall, whilst the comparable proportions of working age adults (16.9% or 506) and adults aged 65 and over (15.5 per cent or 11) were broadly in line with the all-ages proportion.
- For service users aged 65 and over, around four in ten (38.0 per cent or 27) had been inpatients for five years or more, around twice the proportion of all inpatients. Proportionally fewer service users aged under 18 had been inpatients for five years or more (7.6 per cent or 14). For working age adults, the proportion who were inpatients for five years or more (17.7 per cent or 531) was similar to the proportion of all inpatients.
Just under one in five inpatients (18.2 per cent or 570) were staying in wards located 100km or more (as the crow flies) from their residential postcode. About the same proportion (19.6 per cent or 612) stayed in wards within 10km of their residential postcode; a further 7.7 per cent (240 people) were resident in hospital, with the same postcode recorded for both residence and hospital. Substantial regional inequalities were found in the distances travelled for inpatient care:
- More than half of service users resident in the South West (52.6 per cent) were inpatients in wards located 100km or more from their postcode of residence, compared with 8.8 per cent of service users resident in the North East.
- Around four in ten service users resident in London (39.0 per cent) received inpatient care within 10km of their residential postcode (and had a postcode of residence separate from their ward stay), compared with around one in ten in the South East (10.5 per cent).
Most service users (76.3 per cent or 2,481) were inpatients in wards predominantly providing services for people with learning disabilities. A further one in five (20.1 per cent, or 653) were inpatients in mental health wards. The remainder (3.6 per cent or 116) were inpatients on wards predominantly providing some other service. Ward stays in wards designed primarily for people with learning disabilities were substantially below the national proportion in Yorkshire and The Humber (62.2 per cent), London (59.7 per cent), and the South West (40.5 per cent). As a region, the South West had the highest proportion of inpatients staying in mental health wards (45.6 per cent) and in other wards (13.9 per cent).
Around three in four service users (75.1 per cent) in England (where the postcode of ward stay was known) were inpatients within a fifth (31) of England's 152 local authorities. Almost half (49.5 per cent) were staying in just 12 local authorities. The concentration of most inpatients in a small proportion of local authorities contributes to inequalities in provision seen at regional level:
- The South West, the South East and Yorkshire and The Humber were the highest 'net exporters' of service users, having seventy or more service users with a postcode of residence within the region than were receiving care in the region.
- The East Midlands and the East of England were the highest 'net importers' of service users, having one hundred or more service users that were receiving care within the region than had a postcode of residence within the region.
Maintaining contacts with family, friends, advocates and commissioners helps ensure that inpatient stays remain suitable for service users' needs. Overall, providers could not supply a valid residential postcode for 910 people (28.0 per cent of inpatients). Nine providers submitted more than seven in ten (71.6 per cent) of the 910 records received without a valid residential postcode. Some providers were unable to supply valid residential postcodes for most of their inpatients.