Dr Lisa Blissitt 129/06/2009 Caring for People with Dementia It’s really time to do something now!

29/06/2009Dr Lisa Blissitt2 West Midlands SHA Dementia Clinical Pathway Group Our NHS Our Future – National Darzi review Our NHS Our Future – National Darzi review Strategic framework for the West Midlands Strategic framework for the West Midlands 9 clinical pathway groups 9 clinical pathway groups New look service but no new money New look service but no new money Only the West Midlands have separate Dementia Only the West Midlands have separate Dementia

29/06/2009Dr Lisa Blissitt3 Darzi Dementia Pathway Direct cost to the NHS of dementia is 3.3B Direct cost to the NHS of dementia is 3.3B 38% increase in dementia over the next 13 years, 154% over 43 years 38% increase in dementia over the next 13 years, 154% over 43 years No overarching of dementia services No overarching of dementia services Reactive style – crisis – inappropriate use of services Reactive style – crisis – inappropriate use of services Carers no is going to decrease Carers no is going to decrease

29/06/2009Dr Lisa Blissitt4 Underpinning Principles Always patient and carer Always patient and carer Service development based on demand and capacity data : now and projected Service development based on demand and capacity data : now and projected Every PCT prevalence figures including YOD Every PCT prevalence figures including YOD The whole pathway matters The whole pathway matters

29/06/2009Dr Lisa Blissitt5 Emphasized areas Integration Integration Prevention Prevention Quality Quality Locality based services Locality based services Personalization Personalization Choice Choice

29/06/2009Dr Lisa Blissitt6 Challenges All living longer, more dementia All living longer, more dementia Less money Less money Inequalities widening Inequalities widening Variable quality Variable quality Complex systems Complex systems Little public confidence Little public confidence Little investment in prevention Little investment in prevention Increasing costs and buying things that don’t work Increasing costs and buying things that don’t work

29/06/2009Dr Lisa Blissitt7 National Strategy Implementation 7 early priority outcomes 1. Early intervention and diagnosis for all 2. Improved community personal services 3. Supporting carers 4. Improved quality in general hospitals 5. Living well in care homes 6. Informed and effective workforce 7. Joint commissioning strategy for dementia

29/06/2009Dr Lisa Blissitt8 West Midlands 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 the needs of the people with dementia and those of their carers. The emphasis will be on personalization and choice.

29/06/2009Dr Lisa Blissitt9 8 Standards to achieve vision 1.Health and social care to jointly plan and commission a service for people with dementia and their carers 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

29/06/2009Dr Lisa Blissitt10 8 Standards 4. The employed workforce will be competent to address physical and behavioural symptoms 5. Sources of intimate carers will be resourced 6. Each Dementia service will have a Dementia Pathway Coordinator which can be accessed and will remain available throughout the disease process

29/06/2009Dr Lisa Blissitt11 8 Standards 7. Existing disease registers in GP practices will be used to trigger preventative and therapeutic 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

29/06/2009Dr Lisa Blissitt12 Darzi Dementia Pathway Good care pathway Good care pathway See handout

29/06/2009Dr Lisa Blissitt13 Prevention Tackling ageism and stigma Tackling ageism and stigma Awareness raising – start in schools Awareness raising – start in schools Dementias and disease progression until death Dementias and disease progression until death Likelihood of dementia and other long term conditions – the issues Likelihood of dementia and other long term conditions – the issues Info to be available at different sources using a variety of methods Info to be available at different sources using a variety of methods

29/06/2009Dr Lisa Blissitt14 Early Intervention Diagnosis – primary care liaison workers Diagnosis – primary care liaison workers Memory Assessment Service Memory Assessment Service Looking to the future – end of life care, benefits, wills etc while capable Looking to the future – end of life care, benefits, wills etc while capable Ongoing Person and Carer Ongoing Person and Carer Dementia Pathway Co-ordinator Dementia Pathway Co-ordinator

29/06/2009Dr Lisa Blissitt15 Dementia Pathway Co-ordinator Agent to the person with dementia Agent to the person with dementia Accessed after receiving a diagnosis Accessed after receiving a diagnosis Co-ordinate complex care situations Co-ordinate complex care situations Involved until death & beyond Involved until death & beyond Pathway navigator Pathway navigator Knowledge of individualized budgets Knowledge of individualized budgets

29/06/2009Dr Lisa Blissitt16 13 Outcomes Measures Early detection in primary care as a QOF target Early detection in primary care as a QOF target Time to specialist assessment = 18 weeks Time to specialist assessment = 18 weeks Dementia database Dementia database Unplanned (crisis) admissions Unplanned (crisis) admissions Access to appropriate neuroimaging Access to appropriate neuroimaging Rates of prescribing of dementia drugs Rates of prescribing of dementia drugs Assistive technology and telecare Assistive technology and telecare Unsupervised prescription of sedative psychotropic drugs Unsupervised prescription of sedative psychotropic drugs

29/06/2009Dr Lisa Blissitt17 13 Outcomes Measures Access to non-pharmacological therapies Access to non-pharmacological therapies Provision of mental health support in general hospitals Provision of mental health support in general hospitals Availability of out of hours specialist care Availability of out of hours specialist care Expert carer support programmes Expert carer support programmes Place of death and relationship to patient’s wishes Place of death and relationship to patient’s wishes

29/06/2009Dr Lisa Blissitt18 Recommendations Mapping and benchmarking of dementia services by Oct 2009 Mapping and benchmarking of dementia services by Oct 2009 PCT and LA commissioners to monitor and review their services every 2 years PCT and LA 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 2010 Every PCT must commission a Memory Assessment Service with an integrated health and social care team by 2010

29/06/2009Dr Lisa Blissitt19 Recommendations 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 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 Separate dementia from functional inpatient mental health provision by April 2010 Separate dementia from functional inpatient mental health provision by April 2010 Setup dementia coordinator role by April 2010 Setup dementia coordinator role by April 2010

29/06/2009Dr Lisa Blissitt20 Recommendations Identify funded pathway to swiftly access MRI volumetry (hippocampal segmentation), I-FP- CIT (DaT-SCAN), & PIB PET scans where appropriate) 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 Shared care protocols for dementia drugs by April 2009 Appoint/contract named consultant and commissioner for YOD Appoint/contract named consultant and commissioner for YOD Clarify pathway for ASRBD with emphasis on recovery/neuro rehabilitation Clarify pathway for ASRBD with emphasis on recovery/neuro rehabilitation

29/06/2009Dr Lisa Blissitt21 Recommendations Commissioning specialist input into Care Homes by April 2009 Commissioning specialist input into Care Homes by April 2009 Improving home care by 2010 through Improving 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

29/06/2009Dr Lisa Blissitt22 Recommendations User and carer involvement in service planning and inspection (health and social care ) by April 2009 User and carer involvement in service planning and inspection (health and social care ) by April 2009 Providing culturally sensitive proactive support for minority group carers by 2010 Providing culturally sensitive proactive support for minority group carers by 2010

29/06/2009Dr Lisa Blissitt23 Priority Areas Raising public awareness – 80% of public asked in the West Midlands said they knew little or nothing about Raising public awareness – 80% of public asked in the West Midlands said they knew little or nothing about –What dementia is, types, services available, information sources –Prevention and self care actions

29/06/2009Dr Lisa Blissitt24 Priority Areas Increasing numbers who receive a formal diagnosis Increasing numbers who receive a formal diagnosis –33% at present receive a formal diagnosis and often at advanced stages when admitted to an acute sector –Addressing whole diagnostic pathway from presentation of symptoms to diagnostic test and capacity to reaching and presenting a diagnosis

29/06/2009Dr Lisa Blissitt25 Unmet Need The diagnosis gap The diagnosis gap Only a third of people are diagnosed and for most of them it happens too late. For me, diagnosis unlocks the whole system. Sube Banerjee, joint lead national dementia strategy

29/06/2009Dr Lisa Blissitt26 Priority Areas Planning and provision of coordinated care input following diagnosis – reducing use of inappropriate unscheduled care Planning and provision of coordinated care input following diagnosis – reducing use of inappropriate unscheduled care Including advanced care planning and someone to hold the coordination of this across all service sectors. Including advanced care planning and someone to hold the coordination of this across all service sectors.

29/06/2009Dr Lisa Blissitt27 Obstacles to Implementation Systems and policies – hopefully with the national dementia strategy this will be co- ordinated and developed Systems and policies – hopefully with the national dementia strategy this will be co- ordinated and developed Resources Resources Culture Culture Training Training Lack of advocacy Lack of advocacy

29/06/2009Dr Lisa Blissitt28 Darzi Dementia Pathway 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 the needs of the people with dementia and those of their carers. The emphasis will be on personalization and choice.