1. ‘Commissioning for people with complex needs - knowing your population.’ Heather Burns Disabilities Strategy and Specification Manager NHS Sheffield

2. Sheffield Case Register Sheffield Case Register: collects information on health, education, social care, and independent services: set up in 1974 costs £120k annually and records: -Demographic details -Service user information -Carer details -Living situation -Diagnosis -Secondary diagnosis/medical conditions -Abilities/self help skills -Severity of impairment ratings -Challenging behaviour -Employment status -Covers all ages -Allows data comparison over the last 39 years -Inclusion on the register is optional 90-95% estimated coverage

3. Benefits and Uses Projecting health needs and demands/research Used in JSNA Local and national research studies Used as a basic data set for all work on commissioning and service provision Improving access to care and signposting Home Visitors also signpost people into services Downloads to the Acute Hospital Patient Admission system-flags patients Used to communicate information to families e.g. swine flu Used in the Directed Enhanced Services Register Service investigations: access to neurology services for people with epilepsy and breast screening Tracks changes in mortality/ death rates/hospital admissions

4. More Benefits and uses Review of services Respite service review projecting changes in demand and modelling in the effects of Self Directed Supported Accommodation profiles and projection of service users need changes overtime Assessment and Treatment Centre review to develop business case Development of strategies  Autism  Challenging behaviour  Dementia  Short Breaks

5. Case Register Active Clients Between 1998 and December 2009… The total number of people with a learning disability increased over 25% from 2465 to 3080

6. All Community Clients by SPI rating and age group 2009 data

7. Between 1998 and 2008… the overall number of people with severe or complex needs rose by 17% from 682 to 786 the number of 15 to 19 year olds with severe or complex needs increased by 70% from 85 to 144

9. People with Profound & Multiple Impairment 37.5% were from BME communities (17.5% from Pakistani community) 67.5% had airway problems of which 30% required suction 45% required non oral feeding 67.5% of people had epilepsy, with a prediction of 35% of these having complex and serious seizures at adulthood Predicting 82% will be wheelchair dependent at adulthood 100% doubly incontinent 22.5% predicted to have a degenerative condition Tilley, N (2006) Identification of 14-19 year olds with PMLD in Sheffield and the trends and themes of their complex health needs. Sheffield Joint Learning disability Service

10. Looking Ahead…by 2017 The number of adults with moderate or severe learning disabilities will rise by 27% The number of young adults with a learning disability age 20 to 30 years will rise by 90% The number of over 65s with a learning disability will rise by 48% Increase in the number of people aged 35-45 living at home with older family carers, over 65 Increase in people with learning disability from BME communities from 11% to 18% in the under 20 age group Source Sheffield Case Register and Sheffield JSNA 2008

11. Further information “Changes in demography and demand for services for people with complex needs and profound and multiple learning disabilities” Richard Parrott, John Wolstenholme and Nigel Tilley. Tizard Learning Disability Review, Volume 13, Issue 3, 2008 ISBN:1 899617 12 4 richard.parrott@sheffield.gov.ukrichard.parrott@sheffield.gov.uk (Local Authority Learning Disability Commissioner) john.wolstenholme@SHSC.nhs.ukjohn.wolstenholme@SHSC.nhs.uk (Sheffield Case Register Manager) Heather.burns@sheffieldpct.nhs.ukHeather.burns@sheffieldpct.nhs.uk (NHS Sheffield Disability Strategy Lead)