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Building momentum: who’d have thought ROMS could create such a
buzz?
Feedback and outcome measures and diversity - children and young
people with learning disabilities and neurodevelopmental conditions
Ro Rossiter
Tizard Centre, University of Kent
Neil Phillips
Worcestershire Learning Disability CAMHS Team
Duncan Law
Clinical Lead, London and South East CYP IAPT Learning Collaborative
CYP-IAPT is a set of principles for
Whole Service Transformation
The CYP-IAPT principles:
1. Better evidence-based practice
2. Better collaborative practice and shared decision making
3. Authentic participation of families and Young People who
have used or may use services
4. Rigorous outcomes monitoring
Leading to appropriate, accessible,
effective and efficient services
Future In Mind Overview
The Government’s aspirations are that by 2020 we would see:
Improved access
for parents to
evidence-based
programmes of
intervention and
support
Improved crisis
care: right place,
right time, close to
home
Professionals who
work with children
and young people
trained in child
development and
mental health
Timely access to
clinically effective
support
A better offer for
the most
vulnerable children
and young people
Model built around
the needs of
children and young
people, and a
move away from
the ‘tiers’ model
More evidence-
based, outcomes
focussed
treatments
More visible and
accessible support
Improved
transparency and
accountability
across whole
system
Improved public
awareness less
fear, stigma and
discrimination
Mental Health Taskforce
Recommendations “black hole” of
data
‘Transparency and data revolution’
• Better data across the board –
including outcomes
• National metrics for CAMHS
• Improve transparency and choice
• Reduce unnecessary data collection
• Better data linkage
• HSCIC – rapid data sharing
• Data rich care summary records
• Regular prevalence surveys
Feedback and outcomes with children and
young people with learning disabilities
Where were we in 2012?
Limited, largely anecdotal evidence of measures to
use
+
Range of services operating in
isolation
=
LACK OF CONSENSUS
First steps towards consensus: practice sharing
STEP 1: Initial discussions
• Initial informal practice discussions
• mini-survey of BPS Division of Clinical Psychology (DCP) Faculty for
Children, Young People and their Families LD Network
STEP 2: A wider audience
• Publication of articles to stimulate
discussion (Rossiter et al, 2013; Phillips
et al, 2014).
• Participation in CYP-IAPT OEG
(Outcomes and Evaluation Group) 2012-
2014
First steps towards consensus: practice sharing
STEP 3: Survey
• Replication of project for adults with learning disabilities whose
behaviour challenges services by BPS DCP Faculty for Learning
Disabilities (Morris et al, 2012)
• 109 participants
• Range of services
• Range of professions
• UK wide
0 10 20 30 40 50 60 70 80
Goal-based Outcome measures
Sheffield Learning Disability Outcome Measure (SLDOM)
CHI-Experience of Service Questionnaire (CHI-ESQ)
Strengths and Difficulties Questionnaire (SDQ)
Developmental Behavioural Checklist (DBC)
Session by Session measures
Vineland-II
Adaptive Behaviour Assessment System (ABAS-II)
Parenting Stress Index (PSI)
Health of the Nation Outcome Scales for People with Learning…
Developmental Disabilities - Children’s Global AssessmentScale(DD-…
Challenging Behaviour Attributions Scale (CHABA)
Nisonger Child Behavioural Rating Form (N-CBRF)
Family Quality of Life Scale (FQOL)
The Emotional Reactions to Challenging Behavior Scale (ERCBS)
The Behaviour Problems Inventory (BPI-01)
Do you use this measure with families with children with LD?
YES %
9
10
How useful in practice?
0 20 40 60 80 100
DBC
SDQ
CHI-ESQ
SLDOM
GBO
Easy to complete? Parents find it useful? Clinically useful?
%
First steps towards consensus: practice sharing
STEP 4: Sharing clinical practice (2014/15)
• 2 practitioner days organised/supported by CYP-IAPT OEG and
London & SE, and CORC
- 120 CYP-LD practitioners, managers, CYP-IAPT and non CYP-IAPT plus CORC team
from all over UK (and Norway)
• Chapter in ‘Guide to Using Outcomes and Feedback
Tools - COOP Document’ (Rossiter et al 2014)
STEP 5:
http://www.corc.uk.net/ldworkshop/
Guidance paper drafted
Emerging consensus:
Building from survey and practice sharing days
Emerging consensus:
Building from survey and practice sharing days
London & SE CYPT-IAPT/CORC/practitioner guidance (June 2015) with caveats,
principles, references (http://www.corc.uk.net/ldworkshop/):
It is recommended that …… practitioners working with children and young
people with learning disabilities, their families and networks use:
1. At least one standardised measure :
SDQ (Double-sided version with impact supplement) and/or DBC, Nisonger,
BPI as is clinically appropriate to the context - at least twice
SLDOM, whilst not standardised, also appears a clinically useful measure of
change
2. Goals Based Outcome (GBO) - at least twice
3. CHI-ESQ - at least once
Emergingissues for CYP-LD, their families & networks
• Current set of recommended CYP-IAPT ROMS are not fit for purpose or
meaningful for most CYP-LD:
- some not developmentally appropriate
- some not sensitive to change
- lack of norms for CYP-LD
• Need to think about how they are used - learning/progress can be slower
• Tension - pressure to fill in inappropriate measures for data completeness
vs using clinically meaningful measures but not part of dataset
• Complexity and diversity of needs of CYP-LD
• Need to capture change for the individual and the system around them
• GAPS:- capturing the views of CYP-LD and their parents/carers
- especially CYP with severe and profound learning disabilities
Example approach to feedback & outcomes:
CAMHS-LD/ Family Intensive Support Service
Service Constructed Behaviour Grids
Sussex Partnership NHS Trust
Designed to let parents specify and prioritise up to 3
behaviours of concern in relation to:
• Severity of the behaviour
• Frequency of the behaviour
• Distress caused by the behaviour
• Confidence in managing the behaviour
• Coping
Accessible support: Visual Analog Scales (VAS) & This Much! Helping
professionals to help children 2012 David V Glasgow
https://itunes.apple.com/gb/app/this-much!/id571631245?mt=8 (also This Much! for iPad)
Eg Bipolar scale with icons and context. The colours were selected to be relatively easily
discriminated by individuals with red-green colour blindness.
Unipolar scale
Accessible support: This Much! Customise with pictures;
words eg squirmy, anxious; situations
Accessible support: symbols and pictures
eg Widget/Communicate in Print; http://www.widgit.com/about/index.htm
photosymbols: http://www.photosymbols.com/
Talking Mats info & video demos at http://www.talkingmats.com/
• Talking Mats is a communication framework for helping staff
to support children and young people to organise their
thoughts and express their views about particular issues.
• Talking Mats communication symbols allows for easy
consultation of children and young people especially children
with communication difficulties.
• Talking Mats is an interactive resource that uses three sets of
picture communication symbols – topics, options and a visual
scale – and a space on which to display them. This can be a
physical, textured mat, or a digital space, eg tablet, smart
board or computer screen using the app.
My Health, My Say: accessible Family and Friends Test development &
evaluation, Raczka et al., 2014
video at https://www.youtube.com/watch?v=oywm01nDB6Y&list=UURdy5VZu4zvEHFKB2eljTaQ
presentations at http://www.corc.uk.net/ldworkshop/
My Health, My Say: accessible Family and Friends Test
Including people with more severe impairments “If you listen, you will hear us ”
Leicester Partnership NHS Trust; video: https://www.youtube.com/watch?v=Hp4PW17U_h8
Expression through nonverbal gestures, day-to-day behaviours:
“If you listen, you will hear us ” Leicester Partnership NHS Trust
Personalised ways of communicating-small change in face, blink of eye, posture, colour in face
etc; hard to interpret by people who do not know them well; use of communication passports …..
“If you listen, you will hear us ” Leicester Partnership NHS Trust
……… so that they are not left without a voice in decisions which impact on lives & no way of
commenting on services they receive.
Need to pull together information for evaluation and planning of services
Getting going- where to next?
The journey continues: next steps …
• Sharing guidance nationally/across CYP-IAPT
• More formal practice and data sharing (funds needed):
– CYP-LD services volunteering to evaluate pre and post intervention measures, and gather service
user feedback
– Interrogate Millenium Cohort Study database re SDQ in collaboration with Prof Eric Emerson
– International collaborations - Eric Emerson (Australia), Marianne Halvorsen (Norway)
– ?develop new measures if needed
• Include the views of CYP from across the full range of abilities (funds needed):
– ensuring CYP with more substantial impairments, including profound and multiple learning
disabilities (PMLD) are included
• Link in with other relevant projects/experience:
– CHUMS: Children’s oUtcomes Measurement Study, Peninsular Cerebra (Morris et al. 2014)
– Wigham & McConachie’s 2014 Systematic Review of the Properties of Tools Used to Measure
Outcomes in Anxiety Intervention Studies for Children with Autism Spectrum Disorders
Questions:
Are we nearly there yet? Keeping going and navigating potholes
Are we nearly there yet? Keeping going and navigating potholes
• Themes –learning by doing, mess & noise in system (competing demands)
• Reflections - supports and barriers?
• Broad learning/action points -?
USEFUL STUFF
Resources
31
www.corc.uk.net
Help to
develop best
evidence
based services
http://shop.bps.org.u
k/publications/child-
and-family-clinical-
psychology-review-
no-3-summer-
2015.html
www.corc.uk.net
www.minded.org.uk
http://www.rcpch.ac.uk/training-examinations/education/disability-matters-changing-
landscape-disability-uk
Your health, your choices
http://www.nhs.uk/Livewell/Childrenwithalearningdisability/Pages/Helpyourchildlearn.a
spx
© Duncan Law
It’s not (just) about measurement,
it’s about a culture of collaboration
Contacts
r.rossiter@kent.a.uk
neilphillips@nhs.net
Duncan.Law@annafreud.org
Twitter: @drduncanlaw

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Building momentum: who’d have thought ROMS could create such a buzz? - Workshop

  • 1. Building momentum: who’d have thought ROMS could create such a buzz? Feedback and outcome measures and diversity - children and young people with learning disabilities and neurodevelopmental conditions Ro Rossiter Tizard Centre, University of Kent Neil Phillips Worcestershire Learning Disability CAMHS Team Duncan Law Clinical Lead, London and South East CYP IAPT Learning Collaborative
  • 2. CYP-IAPT is a set of principles for Whole Service Transformation The CYP-IAPT principles: 1. Better evidence-based practice 2. Better collaborative practice and shared decision making 3. Authentic participation of families and Young People who have used or may use services 4. Rigorous outcomes monitoring Leading to appropriate, accessible, effective and efficient services
  • 3. Future In Mind Overview The Government’s aspirations are that by 2020 we would see: Improved access for parents to evidence-based programmes of intervention and support Improved crisis care: right place, right time, close to home Professionals who work with children and young people trained in child development and mental health Timely access to clinically effective support A better offer for the most vulnerable children and young people Model built around the needs of children and young people, and a move away from the ‘tiers’ model More evidence- based, outcomes focussed treatments More visible and accessible support Improved transparency and accountability across whole system Improved public awareness less fear, stigma and discrimination
  • 4. Mental Health Taskforce Recommendations “black hole” of data ‘Transparency and data revolution’ • Better data across the board – including outcomes • National metrics for CAMHS • Improve transparency and choice • Reduce unnecessary data collection • Better data linkage • HSCIC – rapid data sharing • Data rich care summary records • Regular prevalence surveys
  • 5. Feedback and outcomes with children and young people with learning disabilities
  • 6. Where were we in 2012? Limited, largely anecdotal evidence of measures to use + Range of services operating in isolation = LACK OF CONSENSUS
  • 7. First steps towards consensus: practice sharing STEP 1: Initial discussions • Initial informal practice discussions • mini-survey of BPS Division of Clinical Psychology (DCP) Faculty for Children, Young People and their Families LD Network STEP 2: A wider audience • Publication of articles to stimulate discussion (Rossiter et al, 2013; Phillips et al, 2014). • Participation in CYP-IAPT OEG (Outcomes and Evaluation Group) 2012- 2014
  • 8. First steps towards consensus: practice sharing STEP 3: Survey • Replication of project for adults with learning disabilities whose behaviour challenges services by BPS DCP Faculty for Learning Disabilities (Morris et al, 2012) • 109 participants • Range of services • Range of professions • UK wide
  • 9. 0 10 20 30 40 50 60 70 80 Goal-based Outcome measures Sheffield Learning Disability Outcome Measure (SLDOM) CHI-Experience of Service Questionnaire (CHI-ESQ) Strengths and Difficulties Questionnaire (SDQ) Developmental Behavioural Checklist (DBC) Session by Session measures Vineland-II Adaptive Behaviour Assessment System (ABAS-II) Parenting Stress Index (PSI) Health of the Nation Outcome Scales for People with Learning… Developmental Disabilities - Children’s Global AssessmentScale(DD-… Challenging Behaviour Attributions Scale (CHABA) Nisonger Child Behavioural Rating Form (N-CBRF) Family Quality of Life Scale (FQOL) The Emotional Reactions to Challenging Behavior Scale (ERCBS) The Behaviour Problems Inventory (BPI-01) Do you use this measure with families with children with LD? YES % 9
  • 10. 10 How useful in practice? 0 20 40 60 80 100 DBC SDQ CHI-ESQ SLDOM GBO Easy to complete? Parents find it useful? Clinically useful? %
  • 11. First steps towards consensus: practice sharing STEP 4: Sharing clinical practice (2014/15) • 2 practitioner days organised/supported by CYP-IAPT OEG and London & SE, and CORC - 120 CYP-LD practitioners, managers, CYP-IAPT and non CYP-IAPT plus CORC team from all over UK (and Norway) • Chapter in ‘Guide to Using Outcomes and Feedback Tools - COOP Document’ (Rossiter et al 2014)
  • 12. STEP 5: http://www.corc.uk.net/ldworkshop/ Guidance paper drafted Emerging consensus: Building from survey and practice sharing days
  • 13. Emerging consensus: Building from survey and practice sharing days London & SE CYPT-IAPT/CORC/practitioner guidance (June 2015) with caveats, principles, references (http://www.corc.uk.net/ldworkshop/): It is recommended that …… practitioners working with children and young people with learning disabilities, their families and networks use: 1. At least one standardised measure : SDQ (Double-sided version with impact supplement) and/or DBC, Nisonger, BPI as is clinically appropriate to the context - at least twice SLDOM, whilst not standardised, also appears a clinically useful measure of change 2. Goals Based Outcome (GBO) - at least twice 3. CHI-ESQ - at least once
  • 14. Emergingissues for CYP-LD, their families & networks • Current set of recommended CYP-IAPT ROMS are not fit for purpose or meaningful for most CYP-LD: - some not developmentally appropriate - some not sensitive to change - lack of norms for CYP-LD • Need to think about how they are used - learning/progress can be slower • Tension - pressure to fill in inappropriate measures for data completeness vs using clinically meaningful measures but not part of dataset • Complexity and diversity of needs of CYP-LD • Need to capture change for the individual and the system around them • GAPS:- capturing the views of CYP-LD and their parents/carers - especially CYP with severe and profound learning disabilities
  • 15. Example approach to feedback & outcomes: CAMHS-LD/ Family Intensive Support Service
  • 16. Service Constructed Behaviour Grids Sussex Partnership NHS Trust Designed to let parents specify and prioritise up to 3 behaviours of concern in relation to: • Severity of the behaviour • Frequency of the behaviour • Distress caused by the behaviour • Confidence in managing the behaviour • Coping
  • 17. Accessible support: Visual Analog Scales (VAS) & This Much! Helping professionals to help children 2012 David V Glasgow https://itunes.apple.com/gb/app/this-much!/id571631245?mt=8 (also This Much! for iPad) Eg Bipolar scale with icons and context. The colours were selected to be relatively easily discriminated by individuals with red-green colour blindness. Unipolar scale
  • 18. Accessible support: This Much! Customise with pictures; words eg squirmy, anxious; situations
  • 19. Accessible support: symbols and pictures eg Widget/Communicate in Print; http://www.widgit.com/about/index.htm photosymbols: http://www.photosymbols.com/
  • 20. Talking Mats info & video demos at http://www.talkingmats.com/ • Talking Mats is a communication framework for helping staff to support children and young people to organise their thoughts and express their views about particular issues. • Talking Mats communication symbols allows for easy consultation of children and young people especially children with communication difficulties. • Talking Mats is an interactive resource that uses three sets of picture communication symbols – topics, options and a visual scale – and a space on which to display them. This can be a physical, textured mat, or a digital space, eg tablet, smart board or computer screen using the app.
  • 21.
  • 22. My Health, My Say: accessible Family and Friends Test development & evaluation, Raczka et al., 2014 video at https://www.youtube.com/watch?v=oywm01nDB6Y&list=UURdy5VZu4zvEHFKB2eljTaQ presentations at http://www.corc.uk.net/ldworkshop/
  • 23. My Health, My Say: accessible Family and Friends Test
  • 24. Including people with more severe impairments “If you listen, you will hear us ” Leicester Partnership NHS Trust; video: https://www.youtube.com/watch?v=Hp4PW17U_h8 Expression through nonverbal gestures, day-to-day behaviours:
  • 25. “If you listen, you will hear us ” Leicester Partnership NHS Trust Personalised ways of communicating-small change in face, blink of eye, posture, colour in face etc; hard to interpret by people who do not know them well; use of communication passports …..
  • 26. “If you listen, you will hear us ” Leicester Partnership NHS Trust ……… so that they are not left without a voice in decisions which impact on lives & no way of commenting on services they receive. Need to pull together information for evaluation and planning of services
  • 28. The journey continues: next steps … • Sharing guidance nationally/across CYP-IAPT • More formal practice and data sharing (funds needed): – CYP-LD services volunteering to evaluate pre and post intervention measures, and gather service user feedback – Interrogate Millenium Cohort Study database re SDQ in collaboration with Prof Eric Emerson – International collaborations - Eric Emerson (Australia), Marianne Halvorsen (Norway) – ?develop new measures if needed • Include the views of CYP from across the full range of abilities (funds needed): – ensuring CYP with more substantial impairments, including profound and multiple learning disabilities (PMLD) are included • Link in with other relevant projects/experience: – CHUMS: Children’s oUtcomes Measurement Study, Peninsular Cerebra (Morris et al. 2014) – Wigham & McConachie’s 2014 Systematic Review of the Properties of Tools Used to Measure Outcomes in Anxiety Intervention Studies for Children with Autism Spectrum Disorders Questions:
  • 29. Are we nearly there yet? Keeping going and navigating potholes
  • 30. Are we nearly there yet? Keeping going and navigating potholes • Themes –learning by doing, mess & noise in system (competing demands) • Reflections - supports and barriers? • Broad learning/action points -?
  • 33. Help to develop best evidence based services http://shop.bps.org.u k/publications/child- and-family-clinical- psychology-review- no-3-summer- 2015.html
  • 36. http://www.rcpch.ac.uk/training-examinations/education/disability-matters-changing- landscape-disability-uk Your health, your choices http://www.nhs.uk/Livewell/Childrenwithalearningdisability/Pages/Helpyourchildlearn.a spx
  • 37. © Duncan Law It’s not (just) about measurement, it’s about a culture of collaboration