1
Commissioning for peoplewith 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

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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

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 2009The 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

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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

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Looking Aheadby 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
• ISBN1 899617 12 4
• richard.parrott_at_sheffield.gov.uk (Local
  Authority Learning Disability Commissioner)
• john.wolstenholme_at_SHSC.nhs.uk (Sheffield Case
  Register Manager)
• Heather.burns_at_sheffieldpct.nhs.uk (NHS Sheffield
  Disability Strategy Lead)