An introduction to PAMIS

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• An introduction to PAMIS
• Scottish Wheelchair Forum
• 27th January 2005
• Loretto Lambe
• Director, PAMIS

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pamis

• PAMIS is a voluntary organisation registered
  charity based in Scotland
• Our Head Office is in the White Top Research
  Unit, Faculty of Education Social Work,
  University of Dundee
• PAMIS is a member of the Scottish Consortium for
  Learning Disabilities

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pamis

• We work in partnership with people with
• profound multiple learning disabilities,
• their families and professionals
• PAMIS has offices in Fife, Glasgow, Grampian,
• Highland, South Lanarkshire and Tayside

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PAMIS Values

• people, not disabilities, first
• equality of opportunities care for all,
  regardless of disability
• recognition of the experience and expertise of
  family carers
• parent/professional partnerships

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Craig
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Jennifer
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Gillian
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Putting a lot into life .
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What is Profound Multiple Learning
Disabilities?

• Profound intellectual disabilities
• Physical disabilities
• Sensory impairments
• Complex healthcare needs

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What is Profound Multiple Learning
Disabilities?

• Physical Disabilities
• most people with PMLD use a wheelchair - often a
  very specialist one.
• many have cerebral palsy musculo-skeletal
  problems eg, contractures scoliosis and very
  limited movement

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Moving and Handling - Hoists
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What is Profound Multiple Learning
Disabilities?

• Communication Difficulties
• Most people with PMLD have no speech or only a
  few single words
• Some are able to use some signs or symbols -
  Makaton, Boardmaker or SignAlong
• People make their likes and dislikes known
  through expressions, behaviour and body-language

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What is Profound Multiple Learning
Disabilities?

• Complex Health Care Needs
• Epilepsy around 2/3 of people with PMLD
• Chronic respiratory difficulties
• chest infections, asthma etc
• Gastro-intestinal difficulties
• eating and drinking issues, swallowing
  problems, nutritional and weight issues

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What does PAMIS do?

• PAMIS offers families
• information advice
• one-to-one support
• sharing experiences and working with other
  families in similar circumstances
• training an extensive workshop programme on a
  range of topics

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What does PAMIS do?

• and also
• participation in active campaigns for better
  opportunities and services
• involvement in consultation on relevant policies
  at local and national levels
• a range of projects initiatives
• partnership working to raise awareness of the
  needs of children and adults with PMLD and their
  families

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Support to individual families
PAMIS offers families

• home visits to discuss concerns and priorities
• information and support
• help with getting better services
• support at key meetings

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Special Interest Groups Parents Professionals
The groups provide members with a regular chance
to

• get together around every 2 months
• share information, experiences and concerns
• plan how to influence services and bring about
  change
• The Groups are also consulted about PMLD
• matters by professionals who make decisions

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PAMIS Projects Iniatives

• Empowering Families Project
• Leisure for All
• Multi-sensory storytelling
• Access to the Curriculum
• Futures supporting young people through
  transition
• Library Information Resource

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Workshops - training programme for families
carers

• deal with topics families tell us are important
• are run in partnership with experienced
  professionals who act as tutors
• include practical sessions to practice skills or
  try out equipment
• provide a written information pack to keep
• no charge, transport and translation is provided
  as required

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Workshop Topics have included

• Oral care healthy teeth and gums
• Eating and drinking issues
• Managing difficult behaviours
• Moving and Handling Awareness
• The Adults with Incapacity Act (2000) (with a
  follow-up legal clinic)
• Negotiation and decision-making skills
• Vision

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Moving Handling Awareness
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Families Speak Up

• local working planning groups and conferences
• Scottish Consortium for Learning Disability
• the Scottish Parliament Cross Party Group on LD
• the Scottish Executive and NHS Health Scotland
• training student teachers, nurses, social
  workers
• national conferences
• on video/DVD

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A better life
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Contact details
PAMIS White Top Research Unit Springfield
House University of Dundee Dundee DD1 4JE Tel
01382 345 154 Email pamis_at_dundee.ac.uk Web
www.dundee.ac.uk/pamis