Development of a pragmatic
integrated care pathway for
dementia in the UK
Sue Thomas
Chief Executive, Commissioning Excellence
Florence Nightingale Scholar
Winston Churchill Fellow
Acknowledgements
Drs Ira Leroi, Ross Dunn, Ross Overstall &
Tony Burch
Dementia Academy Faculty
Objectives
1.
2.
3.
4.
5.
6.
Dementia statistics
Introduction - Initial rationale for development
Process - Delphi results
Outcomes
Overview of current pathway
Conclusions
Dementia is a policy priority in England
• National dementia strategy (DH 2009)
• Prime Minister’s Dementia Challenge for 2012 and 2020 (DH 2012,
2015)
• NICE Dementia pathway, Quality Standards and Guidelines
• Models of Dementia Assessment and Diagnosis; Indicative Cost Review
NHSE 2015)
• Health Education England Dementia Competency Framework
• Commissioning for Quality and Innovation (CQUIN) 2015/16
• NHS Five Year Forward View (NHSW 2014)
• Improving Dementia Services in England = An Interim Report (National
Audit Office 2010)
Dementia Statistics
Prevalence Projections by gender
Projections by Nation
Aim
To create a multi-level interactive
care pathway to assist professionals
in supporting people with dementia at
all stages of the condition and in
various settings
Objectives
Co-design an Interactive Care Pathway (ICP) Toolkit to support
clinicians in better diagnosing and managing dementia in nonspecialist centres
Ensure the toolkit is fully aligned with local and regional strategic
priorities including the NHS England Transformation Framework
Well Pathway for Dementia (NHSE)
Harness local expertise from people with dementia, caregivers,
citizens, practicing clinicians, multidisciplinary health, social care
and agency representatives including voluntary agencies to inform
the content and design of a draft version of the Toolkit
https://www.england.nhs.uk/mentalhealth/wpcontent/uploads/sites/29/2016/03/dementia-well-pathway.pdf
Rationale behind the dementia pathway and toolkit
NHS England ambition is that two thirds of the estimated number of people
with dementia will have a formal diagnosis and post diagnostic support. The
five P’s demonstrate the advantages of investigating people with memory
problems:
1. Discovering treatable emotional and Physical illness
2. Installing Post diagnostic support for carers and families with evidence
that this can
3. Preventing crises
4. emPowering people with dementia and their carers
5. Prevention of significant cognitive decline with interventions directed
towards vascular risk factor
The ability to manage a person with dementia is key and we need to ensure
that the appetite for improving the care of people with dementia is ever
present.
NHS England resources
https://www.england.nhs.uk/mental-health/resources/dementia/
Methodology:
A four round modified
Delphi study facilitated by
a core group of experts
13
Round 1
Workshop setting professionals and individuals with experience of dementia
provided their expert opinion on what should form an integrated dementia
pathway
Round 2
Expert ratification of content
Round 3
Further workshop facilitated by the core group of experts provided further input
and feedback and completed a structured (five point scale) questionnaire
based on round 2 version.
Round 4
Pilot of current pathway on usability
Round 1
24 people met in a workshop setting and provided their
expert opinion on what should form an integrated dementia
pathway - what factors are important by stage: first
symptoms, diagnosis, mild, moderate and advanced
dementia. - this was formulated into Pathway Version 1
Attendees represented health, social care and voluntary
services, emergency services, care homes, people with
dementia and their carers
Round 2 Expert ratification of pathway
Round 3
20 people were consulted (facilitated by the core group of
experts) through repeat workshops and completion of a
structured (five point scale) questionnaire based on round 2
version. The questionnaire was developed to summarise the
extent on which participants agree with the importance of
areas under consideration
Areas covered:
1. Classical aesthetics
2. Attractiveness
3. Content
- Meaningful
- Links to information sites
- Links to websites
- Usefulness for clinical practice
- Case studies
8
Delphi results n= 43
Median score = 50th centile
Interquartile range (IQR) score calculated to
assess extent of agreement between experts
about scored relevance.
IQR represents the difference between 25th and
75th percentile values smaller values indicate a
higher degree of consensus.
On a 5 point Linkert scale IQR of 2 =moderate
consensus, 1 good, 0 high
9
Delphi results n= 43
Median score = 50th centile
Interquartile range (IQR) score calculated to
assess extent of agreement between experts
about scored relevance.
IQR represents the difference between 25th and
75th percentile values smaller values indicate a
higher degree of consensus.
On a 5 point Linkert scale IQR of 2 =moderate
consensus, 1 good, 0 high
Round 4
Pilot
Pilot of pathway
• A range of disciplines and geographical areas were involved in using the
pathway
• This included representatives from across health and social care from
diagnosis through to palliative care
• People living with dementia and their families contributed significantly by
detailing personal coping mechanisms and what they found useful for
day to day living populating a ‘”wall of inspiration of ideas”
• The pilot provided further material for the pathway whilst mapping to the
‘Well pathway tool place’
Outcomes
Integrated Dementia Toolkit
https://dementiaacademy.co/
Pathway pop-ups
Contributions from current practice
Links across to NHS England Well
dementia pathway
Conclusion
Conclusions
• The pathway has proved to be an Aladdin's cave of information for
dementia management
• Forms a useful resource for GP’s and health and social care
professionals
• Useful as basis for education and multidisciplinary and multi agency
collaboration
Stakeholder group
Dr Khalid Alshawy, GP & Dementia Lead for Practice, Care Home Medical Practice,
Salford
Dr Louise Barker, GP Lead for Mental Health, Vale of York CCG, York
Dr Nerida Bernie, GP, Chessington Park Surgery, Kingston
Dr David Bourne, Consultant Physician, Wythenshawe Hospital, Manchester
Professor Alistair Burns, National Clinical Director for Dementia, Institute of Brain,
Behaviour and Mental Health, Manchester
Dr Joanne Cole, Old Age Psychiatry, Birch Hill Hospital, Rochdale
Ms Patsy Cotton, Advanced Nurse Practitioner Movement Disorders, Greater Manchester
Neurosciences Centre, Salford
Dr David Geddes, Head of Primary Care Commissioning, Medical Directorate, NHS
England, Leeds
Dr Rebecca Goggins, GPST2 North Manchester General Hospital, Manchester
Dr Kim Harrison, ST6 Old Age Psychiatry, Birch Hill Hospital, Bolton
Dr Mehran Javeed, ST6 Old Age Psychiatry, Wythenshawe Hospital, Manchester
Dr Jonathan Kaye, GP - CCG Dementia Lead Manchester, Kingsway Medical Practice,
Manchester
Dr Mohammed Khaleel, ST4 dual psych trainee OA/GA, Lancashire Care Foundation
Trust
Sean Lennon, Clinical Director, MMHSCT, Manchester
Dr Joyce Lin Yeo, Consultant Elderly Medicine, University Hospital of South Manchester,
Manchester
Dr Ayema Lwin, ST6 Old Age Psychiatry, Humphrey booth CMHT, Manchester
Dr Aditya Maney, tbc, University Hospital of South Manchester, Manchester
Dr Ross Overshott, Consultant in Liaison Psychiatry, Greater Manchester West Mental Health
NHS Foundation Trust
Dr Nicholas Page, GP, Castle Medical Centre, Nottingham
Dr Lauren Wentworth, Consultant Geriatrician, University Hospital of South Manchester,
Manchester
Kim Wrigley, Quality Improvement Programme Lead (Dementia and Palliative & End of Life
Care), Manchester,
Dr Amanda Thornton, Clinical Director Adult community services, Lancashire Care NHS
Foundation Trust
Dr Katie Athorn, Consultant community geriatrician, Hull Royal Infirmary
Mrs Michelle Butler, Staff nurse Parkinson’s team, Tickhill Hospital
Dr Isabel Costello, SpR Geriatrics, Queen Alexandra Hospital
Ms Deborah Evans, PDNS Montgomery County Infirmary
Dr Anna Folwell, Consultant Geriatrician, Hull & East yorkshire NHS Trust
Dr Dan Harman, Consultant Geriatrician, Hull and East Yorkshire Hospitals NHS Trust
Dr Hardi Hassan, Consultant Geriatrician, UHB Queen Elizabeth Hospital
Miss Claire Keeley, PDNS, Royal Hallamshire Hospital
Dr Andrea Lindahl, Consultant Neurologist, Coventry and Warwickshire Hospital
Ms Jane McConville, PDNS, Tickhill Hospital
Dr Edward Richfield, Research Fellowship, University of Hull
Dr Moe Sein, Consultant Physician, East Cheshire NHS Trust
Mrs Rachel Seymour, Parkinson’s Nurse, Clara Cross Centre, St Martin’s Hospital
Dr Carolyn Tipton, Speciality Doctor, In Geriatrics, Royal Victoria Hospital
Dr Victoria Watts, Consultant Geriatrician, St James’ University Hospital
Dr Maureen Jolayemi, Quality Improvement Senior Project Manager (Dementia),NHS
England (Greater Manchester & Eastern Cheshire
Questions
The pathway can be downloaded from
https://dementiaacademy.files.wordpress.com/2016
/10/dementia-interactive-caretoolkit_280217_linked.pdf
[email protected]