1. Integrated dementia care in Cornwall Tryphaena Doyle, Programme Manager Older People’s Mental Health Bev Chapman, Specialist Dementia Nurse 28 th April 2009 Newquay Practice Based Commissioning Locality Group

2. Slaying of Sacred Cows (Disruptive Innovation - Cornwall Style)

3. Sacred Cow Philosophy People with dementia have needs that can be labelled: ‘health’,‘social’ ‘primary’ ‘secondary’ Dementia is ‘Older People’s Mental Health’ Older People’s Mental Health are ‘secondary’ care services

4. Cow slaying logic (1) Dementia a long term condition: chronic and progressive So: overlapping physical, mental, health and social needs What about younger people with dementia? What about people with learning disabilities? Why ‘mental health’?

5. Cow slaying logic (2) Why are Older People’s Mental Health services, delivered by Community Psychiatric Nurses in Community Mental Health Teams called ‘Secondary’ care when District Nurses, on same band, are ‘Primary Care’? Is secondary care really more ‘specialist’ than primary care? Who has the greater expertise and specialism? A Band 7 Community Matron or Band 5 CPN? A GP or a Consultant Psychiatrist? Or the person with dementia and/or their carer?

6. Divided by a common language Social Care Primary Care Health Care Secondar y Care Non- Community Services (People can’t stay In own home) Community Services (People in own home) Locality – eg Newquay GPs

7. More Bad Language People with dementia are ‘Demented’ ‘Dementing’ ‘Victims’ ‘Sufferers’ ‘Wanderers (without purpose)’

8. Value the PERSON with dementia “Please don’t call us ‘dementing’ – we are still people separate from our disease, we just have a disease of the brain”. If I had cancer, you would not refer to me as ‘cancerous’ would you? Our labels seem to mean so much – am I Alzheimer’s Disease or fronto-temporal dementia, or simply someone with a ‘dementing illness’. All these terms labels us as someone without capacity, without credibility as a member of the community. How about separating us from the illness in some way? How about remembering we are a person with progressive brain damage” Christine Bryden, “Dancing with Dementia”, 2005

9. Sacred Cow Philosophy Most people with dementia are seen by and/or are the responsibility of specialist, secondary, older people’s mental health provider

10. The community system NarrowcliffHealth Centre Dalton House NQ PBC Social Care ServicesSpecialist Older People’s Mental Health Services PCT ServicesCare Homes Other Providers

11. The community system NarrowcliffHealth Centre Dalton House NQ PBC Social Care ServicesCPT ServicesPCT ServicesCare Homes Access Case Mgmt Crisis Response Short Term Long Term Carer Support District Nurses RATS Community Hospital Comm Matrons Other Providers CMHT Functional /Organic Focus on intensive and crisis Dementia Registers The breakthrough!

12. Commissioning integrated pathways rather than organisations Prevention Awareness Recognition Assessment Diagnosis Case Mgmt Unscheduled End of Life Good quality care tailored to dementia Simple pathways and overlapping services Tiered Menu of Interventions

13. Curing Sacred Cow Disease 1.Make dementia ‘everybody’s business’ rather than “somebody else’s business” 2.Focus on prevention – physical health check – vascular checks to prevent vascular events 3.Improve awareness and recognition of dementia amongst GPs, health and social care professionals, including care homes 4.Increase the number of people receiving an early diagnosis and an annual health check.

14. Curing Sacred Cow Disease 5) Treat dementia as long-term condition and focus on case management and anticipatory care to Prevent or defer care home admissions Prevent of defer hospital admission (especially from care homes) Reduce length of stay in care homes and community hospitals 6) Invest in low-intensity ‘treatment and support options’ and make better use of existing options – e.g. Whole System Demonstrator Dementia Package 7) Share specialist expertise with ‘mainstream’ parts of system 8) Share mainstream expertise with ‘specialist’ parts of system

15. What we did and early learning Newquay: Registered Pop 23,000 Anticipated Dementia: 361 The Newquay Pilot

16. Dementia Liaison Pilot Trial the Hospital Liaison model in the community (Care Homes, Community Hospital and GPs) QOF Health-checks (Community & Care Homes) 3 month pilot in 12 care homes – led to commissioning of dementia liaison service. Finding the undiagnosed. Partnership with pharmacists – medication reviews

17. GP Led Memory Clinic Education – anticipation of successful Dementia Academy 27 th March Opportunistic screening with flu jab Recognition, assessment, diagnosing and prescribing cognitive enhancers Complementary and in addition to existing assessment, diagnosis service, which still provides ‘back-up’ and is partly moving to a Memory Clinic model.

18. Public awareness our memory bus

19. What did Newquay tell us? Over 50 patients with undiagnosed dementia identified and registered on QOF registers 104 QOF Health Checks completed 27 Psychiatric Medications discontinued (anti-psychotics, night sedation, anxiolytics and depots). 15 changes to physical medications 8 Blood Tests 5 regular blood pressure reviews 19 pain assessments and treatment 10 Dietary supplements and weight monitoring 6 End of Life Care Plans (preventing admission to acute hospital

20. County wide Dementia Liaison Team DLP’s mix of RGN’s & RMN’s, working autonomously 3 in post at present Recognition of Dementia as a Long Term Condition Meeting complex physical and mental health needs

21. DLP’s in Care Homes Fortnightly review of all care home residents Providing evidence based education and training Close working relationship with G.P as decision maker Annual QOF healthcheck Crisis prevention Easily accessible Acute Hospital admission avoidance Stabilising needs to avoid distressing move to other care facility Family support End of Life care in line with Gold Standard Framework Reduction of ant-psychotic medication Risk assessment

22. DLP’s in Community Hospitals Attending weekly MDT meetings Facilitating discharge home Reduction in inappropriate long term placement Mental Capacity Assessments Discharge Planning (inc. AT) Medication advice Evidence based education and training Our presence is normalising dementia

23. Annual QOF healthcheck Cardiovascular - BP Cognitive Assessment – MMSE/6CIT Medication – rv and recommendations Nutrition – BMI, supplements, referral to Dietician Weight – loss/gain, stability, referral Continence – awareness, problematic, distress, infection PADL’s – Barthel, recent change in abilities, impact of other health issues Mobility – recent change, impact of other health issues Falls – how many?, injuries?, Drug induced, impact of other health issues, risk assessment Mood – Cornell/GDS, treatment, stimulation Pain – PAINAD, trigger for behaviour issues, analgesia End of Life – GSF, LCP, Advanced care planning, Best Interest Meetings in line with NICE guidance Difficult to manage behaviours inc recognition of triggers – 24 hr assessment tool, Plan – ongoing treatment and care plan.

24. IMPROVED HEALTH OUTCOMES CASE STUDY 1 – PAIN Referral – distressed, increasing agitation, head banging, refusing food and fluids, weight loss, poor sleep pattern. Current treatment – Regular Quetiapine, Diazepam, Carbamzipine and Zopiclone. Lorazepam prescribed on PRN basis. Our Assessment – G.P notes, PAINAD, mood & behaviour chart Outcomes – history of chronic back pain (no analgesia), severe constipation. Treatment – reduction and discontinuation of psychiatric medication. Prescribed Movicol, regular gabapentin Outcome – Now settled and relaxed. Pain free. Able to interact with family and care staff. Sleeping well. Improved nutritional status with assosciated weight gain.

25. IMPROVED HEALTH OUTCOMES Case study 3 – Acute hospital avoidance Referral – via Care Home Staff re: increased agitation Current treatment – Known history of recurrent UTI’s – no treatment at this time Assessment – Over 6 hospital admissions in last 12 months. Urinalysis plus MSU. Presence of UTI. Given history recommended low dose prophylactic antibiotic therapy Outcomes – agitation resolved, no further distressing symptoms, no acute hospital admission since on prophylactic treatment

26. IMPROVED HEALTH OUTCOMES Case Study 4 – AT & Facilitating discharge Referral – Community Hospital MDT meeting Discharge plans – Admitted with falls. MDT suggested placement. Assessment – No cognitive impairment. Wished to go home. Nervous about nights alone and stairs. OT assessment suggested hand rails. DLP recommended discharge home with once daily POC and WSD package for falls (lifeline, motion sensor, picture telephone etc) Outcome – discharged home with above. Prevented unnecessary long term care placement. No further hospital admissions

27. IMPROVED HEALTH OUTCOMES Case Study 5 – End of Life Care Referral – Care home staff re: increased agitation Treatment – currently on Carbamazipine, Diazepam and Zopiclone. Recent discharge from acute hospital with pneumonia. Consultant and family agreed end of life care appropriate. Care Home staff in disagreement Assessment – End stage dementia combined with aspiration pneumonia. Appropriate decision by medical staff. Family distressed. Mr G in pain. Outcomes – Non-essential medications discontinued. Analgesia introduced titrated to PAINAD. Family support given. Best Interest meeting arranged for advanced care planning. Close liaison with G.P. DLP to lead on EoL care, including LCP. DN’s aware and will support. DLP in discussion with care home to introduce education around end stage dementia and EoL care. Mr G has a DNAR and Out of Ours service are aware of plan. Mr. G will die at home, where his wife also receives care.

28. Acute hospital improving care for people with dementia Education for all staff including consultants!! Dementia guidelines Pain pathway Palliative care pathway Person centred care inc life-story work Carers support Discharge planning

29. Education education education! Gp Academy Carers education District nurses community matrons pharmacists Acute hospital Care homes

30. 2010.... Tele helpline Memory manual Case management rollout Increase qof registers Health checks for all/ health promotion Reduce hospital admissions/crisis Gold standard palliative care.