The 9th Darzi Clinical Pathway Group Mike Rochfort Programme Lead: Older People’s Mental Health. Care Services Improvement Partnership West Midlands

Why a ninth dementia group? The annual national cost of dementia care –Direct cost to the NHS is £3.3 billion –Overall annual economic burden is £14.3 billion i.e. £25,391 per head –This exceeds combined costs for stroke, heart disease & cancer Dementia in the West Midlands rising to 38% increase over next 13 years; 154% over next 43 years YOD 3 times higher among Asian communities

Why a ninth dementia group? Long Term Conditions End of LifeMental Health Acute Dementia

Overview of current problems There is no overarching “dementia" service Mental Health Services Older Adults Mental Health Services Working Age Adults Primary Care Social Services Care Homes Independent Sector Voluntary Services Charity services

Overview of current problems Unacceptably low rates of identification (approximately 50% never receive a diagnostic assessment) Reactive style → crisis situations → inappropriate use of resources (crisis admissions; inappropriate admissions) Exclusion from crisis resolution / assertive outreach team support Different funding sources along different care pathways No advanced care planning for end of life Insufficient investment in prevention e.g. ARBD inadequate staff training

Carers in west midlands Intimate carers ↓ single households ↑

Ipsos MORI 2008 Carers in west midlands Very little in home support and in home respite care Asian & Afrocarribean carers are reluctant to ask for support carer awareness of where and how to access information on Dementia and Dementia services was low

Approximately 80% of respondents knew “a little” to “nothing at all” about symptoms of Dementia, services for Dementia & the different types of Dementia Ipsos MORI 2008

vision By 2012 all people with a suspected or confirmed diagnosis of Dementia will access an integrated, seamless, proactive and high quality locality based service that encompasses all the expertise to meet needs of the people with Dementia and those of their carers. The emphasis will be on personalisation & choice.

Eight Standards 1.Health and social care jointly plan and commission a service for people and their carers with Dementia which provides seamless, integrated and proactive care 2.The specified services for Dementia interface with services available for all other long term conditions and those for Older people 3.Interventions are available closer to home with home as the base starting point 4.The employed workforce will be competent to address physical and behavioural symptoms 5.Sources of Intimate carers will be adequately resourced 6.Each Dementia service will have a Pathway Navigator or Agent available throughout the disease process 7.Existing disease registers in GP practices will be used to trigger preventative actions for defined types of Dementia 8.Minimum core standards of competency for Dementia care will be used to underpin all education programmes for staff working alongside people with Dementia

the dementia pathway Prevention (primary & secondary) Tackling ageism & stigma Awareness raising – start in schools dementias and disease progression until death; likelihood of dementia and other long term conditions – the issues Info to be available at different sources using a variety of methods Early Intervention 1.Diagnosis GP screening & subsequent referral for specialist assessment. Primary Care Liaison workers. Memory Assessment Service (single access point) Dementia register. Preassessment counselling. Multidisciplinary specialists. Diagnosis: old age psychiatrist; geriatrician; Neurologist; GPwSI Early Intervention 2. “Looking to future” clinic While Capable: includes, end of life care, benefits, lasting power of attorney, living wills, advanced care planning, advocacy requirements, driving, genetic counselling, etc 3. Ongoing Person & Carer Centred Care Integrated CMHT Advocacy Respite Care Intermediate Care Crisis Intervention Young Onset Dementia team Outpatient/Community Clinics Hospital Liaison team Planned Inpatient Admission (assessment & Continuing Care) Social Services Palliative Care Bereavement End-of-Life care Carer Support Residential/Nursing care Psychological Services Long-term Conditions Specialist Dementia Service Expert carer programmes Dementia Pathway Coordinator Person with dementia Royal Colleges, Department for Education, Public Health Person with Dementia Long Term Conditions

Dementia Pathway Coordinator Agent to the person with dementia Accessed after receiving a diagnosis Coordinate complex care situations Involved until death & beyond Pathway/s navigator –Primary care –Specialist health care –Social services –Third sector –others Knowledge of individualised budgets

13 Outcome measures Early detection programmes in primary care as a QOF target Time to specialist assessment = 18 weeks Dementia database Unplanned (crisis) admissions Access to appropriate neuroimaging Rates of prescribing of dementia drugs Assistive Technology & Telecare Unsupervised prescription of sedative psychotropic drugs Access to nonpharmacological therapies Provision of mental health support in general hospitals Availability of out of hours specialist care Expert carer support programmes Place of death and relationship to patient’s wishes

Recommendations - National Hard hitting national public health alcohol misuse campaign targeting young people as well as adults Raise awareness of dementia in school curriculum and public domain with emphasis on: –Stigma –Attitudes, discrimination, abuse –Early symptoms –Prevention & life styles –Effective interventions –A programme of “expert speakers" to raise awareness

Recommendations - Regional Appoint Regional Dementia Chair to oversee funding, implementation & development of new Dementia Pathway Implement Joint Commissioning by April Develop joint audit/service effectiveness tools & joint learning (primary & secondary care) Coordinating a review of YOD service provision by April 2009 Piloting of regional primary care dementia quality indicators by Oct 2009

Recommendations - PCT & Local Authorities mapping and benchmarking of dementia services by Oct 2009 PCT and Local Authority commissioners to monitor and review their services every 2 years Every PCT must commission a Memory Assessment Service with an integrated health and social care team by By 2010, all people with dementia admitted to a general hospital will receive care from staff who have received appropriate and ongoing training in dementia care. A dementia lead (usually a geriatrician) will be nominated & a Hospital Liaison team commissioned.

Recommendations - PCT & Local Authorities Separate dementia from functional inpatient mental health provision by April 2010 Setup Dementia Coordinator role for new Dementia pathway by April 2010 Identify funded pathway to swiftly access MRI volumetry (hippocampal segmentation), I-FP-CIT (DaT-SCAN), & PIB PET scans (where appropriate) by April 2010 Shared Care Protocols for dementia drugs by April 2009 Appoint/contract named consultant & commissioner for YOD Clarify pathway for ARBD with emphasis on recovery/neurorehabilitation

Recommendations - PCT & Local Authorities Commissioning specialist input into Care Homes by April Improving in home care by 2010 through: Mandatory accredited dementia training for formal carers adhering to agreed minimum care standards audit of carer satisfaction availability of appropriate respite care user & carer involvement in service planning & inspection (health & social care) by April 2009 providing culturally sensitive proactive support for minority group carers by 2010

Recommendations - Regional Workforce Deanery to undertake the following training : –New Roles: Primary care liaison workers Dementia pathway coordinators –Mandatory Training: Basic e.g. residential care, ambulance General e.g. acute hospital staff, GP Specialist e.g. consultants, mental health staff, GPwSI