Ahead of the Game in Dementia: Sharing good practice from across Yorkshire and Humber

Transcription

1 Ahead of the Game in Dementia: Sharing good practice from across Yorkshire and Humber #yhdementia Wifi Username: Guest, Password: Leeds2010 Yorkshire & the Humber Strategic Clinical 25 th June 2015

2 Ahead of the Game in Dementia Dr Paul Twomey, Dementia Clinical Ambassador and Joint Clinical Medical Director, Yorkshire and the Humber NHS E

3 Plans for the day Mix of plenary, workshops and the Quality Improvement Awards Stalls and poster presentations Twitter feed please use #yhdementia Learn to tweet! Social media café across lunchtime in the Presidents Suite Films Quiet area

4 Practicalities Fire alarm Toilets Workshop choices Presentations Evaluation Certificates of attendance Videos/photos Any questions, please ask someone on the registration desk

5 Why is dementia so difficult?

6 Casefinding Mood Diagnosis Healthcare and Society A person with dementia Progressive nature Family Financial and legal aspects

7 Case-finding

8 Diagnosis difficult in the early stages No single blood test or scan to make the diagnosis Cognitive tests Time-consuming Subjective Fluctuate Mood/motivation Consent Lack of cooperation

9 Lack of insight or denial Co-existing depression Multiple co-morbidities Capacity?

10 Progressive Needs change as the disease progresses

11 Individuals Individuals get dementia and dementia changes individuals every case is different

12 Family A gradual bereavement

13 Emerging themes >>Focus >>Focus Dementia considered as a LTC CF to Diabetes/ heart failure Role of GP Practice & Community Services The challenge = how we may deliver, and pace of change to address expectations

14 Resources and their focus o o o o The dementia primer dementia revealed What primary care need to know Dementia diagnosis & management A brief pragmatic resource for GP for general practice Evidently Better Dementia PDS Local health community Dementia Care Pathway What to do How to do it Bring and borrow The so what

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16 Organisation Primary care Memory clinic

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18 Navigating the care system GP Voluntary sector Memory clinic Community outreach Social services Our systems must help and support and not add to the difficulties

19 Carer Reflections Ray Carver

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21 Dementia Alistair Burns National Clinical Director

22 Dementia Where have we come from? Where are we now? Where are we going?

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24 Dementia Where have we come from? Where are we now? Where are we going?

25 40% lost friends 48% said they were a burden to family 19% said they were a burden to friends 61% felt lonely 77% felt anxious or depressed Two thirds of people say they were living well with dementia

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28 Of survey respondents feel a part of their community When asked what they have had to stop doing, people said: 28% Getting out of the house 22% Exercise 16% Transport 23% Shopping 9% Have had to give up everything

29 i statements I have personal choice and control over the decisions that affect me. I know that services are designed around me, my needs and my carer s needs. I have support that helps me live my life. I have the knowledge to get what I need. I live in an enabling and supportive environment where I feel valued and understood. I have a sense of belonging and of being a valued part of family, community and civic life. I am confident my end of life wishes will be respected. I can expect a good death. I know that there is research going on which will deliver a better life for people with dementia, and I know how I can contribute to it.

30 Prime Minister s challenge on Dementia (2012) Improvements in health and care Raising awareness Better research

31 Dementia Research Increase in funding 09/ m 13/ m 14/ m Alzheimer s Research UK million research pledge. Alzheimer s Society million over 10 years UK Dementia Platform Patients in clinical trials, less than 1%, to 4.5%

32 Dementia Friends

33 Why investigate/diagnose dementia? Physical/emotional illness identified Post diagnostic support (em)powers patients and their carers Prevents crises Postpone further decline with interventions

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36 Dementia Diagnosis and post diagnostic support Sliding doors - Mr Smith aged 79 What can happen. Becomes distressed and agitated one Saturday night Seen by on call GP and admitted to hospital Diagnosed with delirium secondary to UTI History of two years memory loss, wife not managing well Sedated on admission, discharged to care home

37 Dementia Diagnosis and post diagnostic support Sliding doors - Mr Smith aged 79 What can happen. Becomes distressed and agitated one Saturday night Seen by on call GP and admitted to hospital Diagnosed with delirium secondary to UTI History of two years memory loss, wife not managing well Sedated on admission, discharged to care home What could happen. Identified as having dementia two years ago Supported by a Dementia Advisor Wife notices he is not himself one Tuesday GP who knows him visits and prescribes antibiotic for a UTI Recovers no need for hospital admission

38 NHS England s Dementia Plan Five components: Regional and Area Team Support to CCGs Improving Data eg harmonisation of clinical records Proactive Communications Intensive Clinical Support (Ambassadors) Enhanced services

39 designcouncil.org.uk

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41 Dementia Where have we come from? Where are we now? Where are we going?

42 Prevention and public health Patients having far greater control Break down barriers between primary/secondary care Multispecialty Community providers Primary and Acute care systems New deal for GPs Parity of esteem Local leadership

43 Awareness Key role of GPs Post diagnostic support Information, advice, carers Access to diagnosis Staff training I million dementia friends Highest diagnosis rate Dementia Institute Dementia Friends/ businesses Research

44 i statements I have personal choice and control over the decisions that affect me. I know that services are designed around me, my needs and my carer s needs. I have support that helps me live my life. I have the knowledge to get what I need. I live in an enabling and supportive environment where I feel valued and understood. I have a sense of belonging and of being a valued part of family, community and civic life. I am confident my end of life wishes will be respected. I can expect a good death. I know that there is research going on which will deliver a better life for people with dementia, and I know how I can contribute to it.

45 Yorkshire & Humber focus Dr Oliver Corrado Co-Clinical Lead, Yorkshire & Humber Strategic Clinical Networks

46 Ahead of the Game in Dementia!: Regional Focus Dr Oliver J Corrado Consultant Geriatrician LTHT, Co-Clinical Lead Yorks and Humber SCN for Dementia

47 The SCN Team! Nicola Phillis (QI Lead), Lisa Alderson, Noreen Slinger OJC, Dr Wendy Burn (Co-Lead), Dr Sara Humphrey (GP Adviser) Penny Kirk (QI Manager Dementia) SCN Manager: Alison Bagnall (MH, Dementia, Neurological Conditions) But we need your engagement and involvement!

48 DEMENTIA MEETINGS Acute Dementia Champions Group Meet 2-3 times/year Dementia leads from all Y&H acute trusts Chair: SCN Co-Clinical Lead Dementia Vice Chairs: Consultant Elderly Care, Hull & East Yorkshire Hospitals and Consultant Care of Older People, Doncaster & Bassetlaw NHS FT SYCOM 10CC HNYCOM Regional Dementia Commissioning Leads Group Meets every 3 months CCG and LA dementia leads plus 3 rd sector reps Chair: CCG Commissioning Lead, Doncaster CCG Older People s Psychiatrists Forum Meets annually as a forum plus one additional joint clinical leads meeting. Chair: SCN Co-Clinical Lead Dementia Regional Dementia Consensus Meetings Meetings convened as required. Attendees invited from relevant stakeholder groups, depending on topic for discussion. Chair: SCN Clinical Director /Deputy Key Yorkshire & Humber Education & Training Task & Finish group Led & Managed by HEYH Chair: SCN Co-Clinical Lead Dementia Formal link to the group via terms of reference/governance arrangements Information sharing between groups via chairs and/or joint members Full support from SCN quality improvement and administration teams Led and managed by other organisations, with SCN attendance Yorkshire & Humber Dementia Action Alliance Meets 4 times/year Public, voluntary & private sector attendees. Chair: Yorkshire & Humber DAA Project Manager CCG GP Dementia Leads Forum Meetings as required (2-times/year) plus joint clinical leads meeting. Chair: SCN GP Clinical Advisor

49 SCN Website (Twitter and App!)

50 SCN Objectives CQUINs QOF DES Reports Charters Challenges Promote joint working and collaboration across the care system Improve health outcomes by connecting commissioners, providers, professionals and consumers across a pathway of care, sharing best practice and innovation to drive improvement.

51 SCN Plan Improve dementia diagnostic rates (increase capacity, community/primary care based services) 2. Post - diagnostic support (PDS) for people and carers. What is good PDS? 3. People with dementia in Care Homes advance care plans, frailty, unnecessary admissions 4. End of Life Care working with regional palliative care team to provide good EoLC for people with dementia

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53 Dementia Quality Toolkit

54 Dementia and co-morbidity Proportion of those on dementia diagnosis registers in Leeds 35.0% 30.0% 25.0% 20.0% 15.0% 10.0% 5.0% 0.0% Number of long-term conditions (including dementia)

55 BAME Communities (% population) in Yorks and Humber

56 Challenges in providing good dementia care for BAME Communities Languages and dialects (communication and assessment). No word for dementia in 5 main South Asian languages Stigmatisation of dementia in some communities, seen as madness Poor awareness of available services Carers wanting help but afraid to seek it

57 SCN Neuroimaging Guidance

58 QI Award for Dementia

59 Dementia Friendly Yorkshire

60 Dementia Friendly Yorkshire

61 Dementia Friendly Yorkshire

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64 Workshops pm Workshop 1A Education and Training 1B Quality Improvement Awards 1C Post Diagnostic Support 1D Accessing Peer Support Room Nicky Chapman Suite (in here) Reaney Suite Bremner Suite (downstairs) Presidents Suite