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London Dementia Strategic Clinical Network
Date
Supporting people with dementia: Life after diagnosis
15th July 2015
London Dementia Strategic Clinical Network
Date
Supporting people with
dementia: Life after diagnosis
Dr Jeremy Isaacs
Consultant Neurologist, St George’s
Hospital
Clinical lead for effective diagnosis
Dr Amanda Thompsell
Consultant Psychiatrist, South
London & Maudsley
Clinical lead for improving quality of
care
Outline of presentation
• Introductory remarks about today (JI)
• Summary of the Effective Diagnosis workstream outputs (JI)
• Showcase the St George’s Hospital post-diagnosis support project for people affected by Young Onset Dementia (JI)
• Summary of Improving Quality of Care workstream outputs (AT)
Purpose of today’s meeting
• A diagnosis of dementia represents the closure of one part of the “journey”
• And the beginning of a longer phase of living with the condition
• This can last 10 years or more
• During which there is inevitable progression
• Patients and carers’ needs are changing all the time
• How do we respond to this in a personalised, integrated and cost effective way?
Themes for the day
• What does excellent post-diagnosis support look like?
• What’s missing currently?
• How do we evidence interventions?
• What are the national drivers for change?
• What experiences of improving the post-diagnosis support “offer” do we already have in London?
• We need solutions that are:
• centred around patients and carers
• not undermined by transitions between different parts of the NHS or between NHS, social and 3rd sector care
1. I have personal choice and control or influence over decisions about me
2. I know that services are designed around me and my needs 3. I have support that helps me live my life 4. I have the knowledge and know-how to get what I need 5. I live in an enabling and supportive environment where I feel
valued and understood 6. I have a sense of belonging and of being a valued part of
family, community and civic life 7. I know there is research going on which delivers a better life
for me now and hope for the future
Challenges
• There is significant variation in post-diagnosis care
• We don’t really know which aspects of variation are unwarranted
• We have some:
• Tools e.g. care plans, CMC
• Desirable outcomes e.g. avoiding institutionalisation, improved patient & carer wellbeing, hospital admission avoidance, improved EoL experience
• But little consensus re:
• Who is accountable for delivering these outcomes
• What structures/personnel/pathways/costs work best
Background to the London dementia SCN
London Dementia Strategic Clinical Network (SCN) formed in April 2013
Clinical Director (Eileen Sills 2013-2015, Dan Harwood 2015-)
Project management support from NHS England (London)
Leadership group
Three workstreams, each with a clinical lead:
- Effective diagnosis (Jeremy Isaacs)
- Post-diagnosis support (Sujoy Mukherjee & Hugo de Waal)
- Improving quality of care (Amanda Thompsell)
Total number of questions
Effective Diagnosis workstream
• Coding clean-up” exercise
• Co-led with Dr Nerida Burnie, Kingston GP
The “coding clean-up” exercise: 1. Find your QOF dementia register.
2. Perform the following searches: All those prescribed anti-dementia medication, including Donezepil, Galantamine,
Rivastigmine, Memantine hydrochloride
Description Read code CTv3 code
H/O dementia 1461.00 1461.00
Dementia monitoring 66h..00 XaMJC
Dementia annual review 6AB..00 XaMGF
Cognitive decline 28E..00 No equivalent
Confusion R009.00 R009.00
Memory loss symptom IB1A Inc. IB1A-2 IB1A
Memory impairment Z7CEH X75xU
Short term memory problems Z7CF811 No equivalent
3. For the resulting lists on all these searches you need to compare the results against
your QOF dementia register.
4. When you find discrepancies, you will have to look into the notes and see if the patient has dementia or not.
5. If they have dementia, code them. It is best to back date this to the date of diagnosis (if
you know it) or entry to the nursing home, etc. This avoids the QOF targets for performing memory loss screening bloods.
Ruth Evans – London Dementia Strategic Clinical Network
London Dementia Diagnosis Rates 14/15
Ruth Evans – London Dementia Strategic Clinical Network
• September 2014 • March 2015
Results (contd.)
Effective Diagnosis workstream
Establishment of the London Memory Assessment Network in October 2014
Overseen by the effective diagnosis workstream
Aims
- Share best practice and service design
- Educational component
- Reduce variation in care and improve quality
- Pan-London audit of diagnostic process in memory services
Memory services audit
• >30 memory assessment services in London
• Variation in funding and specification
• But all commissioned to do two key things:
• Diagnose dementia
• Link people to immediate post-diagnosis support
• Anecdotally we know that there is variation in care
• NICE guidance tells us some of what we should be doing
• Through expert consensus we have agreed ~ 50 parameters that inform on the quality of care
1. Organisational questions
2. Socio-demographic details of patient
3. Referral details including time to 1st assessment
4. Details of assessment and investigations
5. Diagnosis, including sub-type
6. Treatment and immediate post-diagnosis support offered
Memory services audit:
Memory services audit
Invitation letter to London memory service leads sent out
50 consecutive casenotes from 1st January 2015
Data to be submitted by October and presented at next memory assessment network meeting on 4th November
The dementias are associated with ageing
: 1989-94
: 2008-11
Matthews et al, Lancet 2013
• There are about 850,000 people with dementia in the UK
• Of these about 65,000 have early-onset dementia
• Are the needs of this 7% different from the older 93%?
Issues in young onset dementia
• Diagnostic complexity
• Delays in diagnosis
• Years of life lost to illness
• Interruption of mid-life plans
• Early retirement
• Cessation of childcare responsibilities
• Financial repercussions
• Rapid progression
• Behavioural symptoms in the physically well
• Lack of age-appropriate facilities
• Effects on spouses
• Effects on young adult children
• Effects on elderly parents
• Stigma
Excellence in specialist and community healthcare
St George’s Early Onset Dementia support group
Launched 2011 by cognitive neurology clinic team
Mailing list reaches > 100 people
Evening meetings at St George’s Hospital
Supported by HEE and St George’s Hospital charity
Meetings co-produced with Dementia Pathfinders CIC
Increased frequency of meetings, now every 6 weeks
Shift from didactic to interactive/experiential content
Excellence in specialist and community healthcare
www.youngdementiasupport.london
• Website for people affected by EOD
• Funded by grant from HESL
• Information of specific relevance to EOD
• Not designed to replicate excellent web-based
resources elsewhere
• Will promote activities of our support group
Update on work so far
Developed simple to read guidance based on:
• Best practice
• Published guidance
• Sharing of tools that have already been developed across London
• Experience of strategic leadership group
The same guidance applies to
• All settings - hospital , care homes or at home
• Health and social care
Our guidance
• Dementia training for Health and Social care staff
• Guidance on recognition schemes
• Managing pain in people with dementia
• Guidance on content of delirium policy
• Commissioning checklist for dementia
• Carer’s checklist [coming soon]
Dementia Training for Health & Social Care Staff
Guidance on recognition schemes
Managing Pain for People with Dementia
Guidance on Delirium Policies
Commissioners’ Checklist for Dementia
What to Consider when Seeking Support from Dementia Services
Click on Links
• Dementia training for health and social care staff in London
• Guidance on recognition schemes
• Managing pain for people with dementia
• Guidance on content of delirium policies
• Commissioning checklist for dementia
• Carer’s checklist [coming soon]
Dementia 2015: Aiming higher to transform lives (July 2015) • Survey of over 500 people with dementia and 1013 GPs
• 49% of people with dementia said they were not getting enough support from Government.
• 49% of respondents also said their carer did not receive help.
• 67% of GPs said their patients were not receiving enough support from health and adult social services ,leaving families to fill the gap in support and care.
Recommendations for Next Steps
1. Producing a national action plan for dementia and securing funding
2. Taking action on risk management
3. Improving diagnosis and transforming support after diagnosis
4. Supporting carers
5. Delivering dementia-friendly health and care settings
6. Tackling issues in dementia education, training and workforce
7. Driving forward dementia-friendly communities
8. Making the UK a leader in transformational research
Conclusion
• Supporting people with dementia and their carers throughout the disease course remains a significant challenge
• Initiatives by providers, commissioners, AHSNs, charities etc can have a big impact but often localised
• The SCN provides a mechanism for “levelling up” across London through sharing best practice and networking
• Thank you in advance for your contributions to today’s meeting
36
Dementia:
Mending
the cracks
in the
pathway
Sally Warren Deputy Chief Inspector of Adult Social Care 15 July 2015
36
How do we inspire improvement?
It’s a collective effort
Commissioners and funders
Providers
Professionals
Regulators
Public voice
CQC purpose and role
Our purpose
We make sure health and social care
services provide people with safe, effective,
compassionate, high-quality care and we
encourage care services to improve
Our role
We monitor, inspect and regulate services to
make sure they meet fundamental standards
of quality and safety and we publish what we
find, including performance ratings to help
people choose care
38
The Mum (or anyone you love) Test
Is it good enough for my Mum?
Is it
safe?
Is it
caring?
Is it
effective?
Is it responsive to
people’s needs?
Is it
well-led?
39
Help people living with dementia maintain independence for as long as possible
Enable people living with dementia to live life to the full
Make sure families and carers feel cared for and supported
Ensure end of life care is the best it can be
See the person not the diagnosis
Be inspired to…
41
Latest ratings at 7 July 2015
Hospitals
3 (2%) Outstanding
70 (38%) Good
103 (55%) Requires
Improvement
13 (7%) Inadequate
Adult Social Care
services
24 (<0.5%) Outstanding
3160 (58%) Good
1852 (34%) Requires
Improvement
413 (8%) Inadequate
Primary medical services
40 (3%) Outstanding
976 (81%) Good
139 (11%) Requires
Improvement
45 (4%) Inadequate
Ratings by key question
42 Source: Ratings data extracted 14/05/2015
Behind the statistics
The food is
lovely and I
really enjoy it
There’s not much I
like to do here
43
44
Our expectations
Care for people living with
dementia should:
Be person centred
Take account of physical and
mental well-being
Improve the experience for
people moving between
services
Keep up-to-date with good
practice
45
46
It’s a big issue
The number of people living
with dementia is growing
Most of the 400,000 older
people living in care homes
have dementia and around
40% of people over 65 in
hospital beds will be living
with dementia
This large and increasing
number of people cannot and
should not be ignored
47
Key finding: variation
The quality of dementia care is
variable – not everyone is meeting the
standards we expect
Across more than 90% of care homes
and hospitals visited, we found some
variable or poor care
Transitions between services should
be improved
People are likely to experience poor
care at some point
48
Findings: Cracks in the Pathway (1)
49
Findings: Cracks in the Pathway (2)
50
Findings: Cracks in the Pathway (3)
51
Good care is out there
52
But integrated care is a problem
Continue to provide information about individual services
Set expectations for services to work with others
Undertake more thematic reviews
Look at experience of people in localities
How can regulation help?
Person-centred co-ordinated care not organisational focus
Work with 6 vanguard sites, enhancing health in care homes
‘Walk the talk’ – work in partnership with others – through co-
production and addressing duplication
11
Outstanding dementia care at home
54
‘Staff were given the opportunity to build meaningful
relationships with people and ample time to meet people’s
needs and provide companionship’
‘People felt care workers
treated them with kindness
and respect’
‘The registered manager
delivered dementia training
to the public – including
bank and shop staff – to
help them understand how
to help people with
dementia’
Home Instead Senior Care,
West Lancashire and Chorley
55
Focus on the person not the diagnosis
www.cqc.org.uk
@CareQualityComm
Sally Warren
Deputy Chief Inspector of Adult Social Care
@SallyinDulwich
56
Thank you
56
Adelina Comas-Herrera
Personal Social Services Research Unit London School of Economics and Political
Dementia: what is the
(economic) evidence for post-
diagnostic support?
Acknowledgements
• Based on research carried out with Martin Knapp,
Raphael Wittenberg, A-La Park, David McDaid and
Alistair Burns
• Thanks for Martin Knapp for letting me borrow
some of his slides
• Research funding:
– NHSE: Dementia Treatment & Care: Economic
Analysis, end August
– NIHR/ESRC: MODEM project (ending 2018)
• This presentation does not represent the views of
my colleagues or research funders.
Acknowledgments
Why do we need economic
evidence?
Estimates by PSSRU for Dementia UK: 2nd edition (Prince et al, 2014)
Prevalence and costs (UK)
Total cost = £26.3 bn
(€33.4 bn)
Average cost per
person = £32,250
(€53,860)
816,000 people with dementia in the UK today
Future prevalence projections (UK)
Prince et al Dementia UK; 2nd Edition 2014; Matthews et al, Lancet 2013
UK prevalence 2012 to 2051
Men
Women
There are 816,000 people with dementia in the UK today
Although the age-specific prevalence rate might now
be slowing, the total number will increase.
Hence: big increases in reliance on unpaid carers; &
big increases in health & social care service costs
Making sure we spend well on
dementia care • Martin Knapp distinguishes between “good” and
“bad” costs of dementia:
• “bad costs: care and treatment due to – late or missing diagnosis
– unavailability of good quality care
– unplanned crisis admission into hospital, or
– breakdown in community support resulting in earlier admission into a care home than necessary”.
• “good costs: Appropriate and effective treatment and care responses to needs of individual and carers, following consultation around their preferences”.
http://www.pssru.ac.uk/blogs/blog/w
hat-does-dementia-cost/ by Martin
Knapp
If the clinical/care
question is:
‘Does this
intervention
work?’
Then the economic
question is:
‘Is it worth it?’
Cost-effectiveness: dimensions
Which costs?
- depends on the
decisions to be informed
Which outcomes?
- meeting needs
- quality of life
Over what period?
- longer is better, but …
- consider modelling
Crunch - Is it worth it?
- trade-offs aren’t easy
OUR CURRENT RESEARCH
1. Dementia Treatment & Care: Economic
Analysis, funded by NHSE
2. MODEM: Modelling Dementia Costs and
Outcomes, funded by NIHR/ESR
Dementia Treatment & Care:
Economic Analysis
1. Summary and update of existing evidence base
on cost-effectiveness of treatments and care
arrangements (“interventions”)
2. Generation of up-to-date economic evidence on
those interventions that is relevant to the
English context
3. Preparation of an accessible summary that is
useful to commissioners
4. Funded by NHS England
Team: Martin Knapp, Adelina Comas-Herrera, Raphael
Wittenberg, A-La Park and David McDaid
o How many people with dementia between now and 2040?
o What will be the costs and outcomes of their treatment, care
and support under present arrangements?
o How do these costs and outcomes vary with individual
characteristics and circumstances?
o How could costs and cost-effectiveness change if better
interventions were more widely available and accessed?
MODEM: a projections study (2014-18)
Team: Martin Knapp, Mauricio Avendano, Sally-Marie Bamford, Sube
Banerjee, Ann Bowling, Adelina Comas, Margaret Dangoor, Josie Dixon,
Emily Grundy, Bo Hu, Carol Jagger, Maria Karagiannidou, Derek King, Daniel
Lombard, David McDaid, Jitka Pikhartova, Amritpal Rehill, Raphael
Wittenberg,
MODEM: Methods Engage with people with dementia, carers, other stakeholders
Make projections of:
• N of people with dementia over the period to 2040
• family or other unpaid support available to them
• costs of services & unpaid support.
Review evidence of effective and cost-effective interventions for
people with dementia and carers (including on-going studies that will
report soon)
Collect new data to cross-walk between measures in studies & surveys
Gather experiential evidence from people with dementia & carers
Simulate wider roll-out of evidence-based interventions on outcomes,
costs, patterns of expenditure
Legacy model so commissioners, providers, advocacy groups, individuals
and families can access our findings and methods, and make their own
projections of needs for care and support, outcomes & costs. 67
WHAT DO WE KNOW SO FAR:
examples
What economic evidence do we have? Intervention None Emerging Robust
Primary prevention & risk reduction X
Dementia-friendly communities X
Timely diagnosis X
Carer interventions X
Cognitive stimulation therapy X
Reminiscence therapy X
Music interventions X
Community social care X
Primary care memory clinics X
Anti-dementia medications X
Antipsychotic medications X
Antidepressant medications X
Information & communication
technology
X
Admiral nurses X
Case management X
Falls prevention X
Acute hospitals X
Care homes X
End-of-life care X
Animal therapy X
o ‘Research shows that carers of people with dementia
experience greater strain and distress than carers of
other older people. We want to see better support for
carers’ (Prime Minister’s Challenge on Dementia, 2012)
o Unpaid carers – the unsung heroes of dementia care
o High out-of-pocket and imputed costs …
o … and these costs will grow as prevalence increases,
and as health and social care budgets get stretched.
o Many carers experience a lot of stress
o So, what works?
Carer support
Individual programme (8 sessions over 8-14 weeks, delivered by
psychology graduates + manual); carers given techniques to:
o understand behaviours of person they care for
o manage behaviour
o change unhelpful thoughts
o promote acceptance
o improve communication
o plan for the future
o relax
o engage in meaningful, enjoyable activities.
START: a manual-based coping strategy
Livingston et al BMJ 2013; Knapp et al BMJ 2013; Livingston et al submitted
Pragmatic, multicentre RCT
– START vs usual support.
n=260 family carers of
people with dementia, North
London area.
Analyses 8 & 24 months after
end of intervention
Carers with usual support were 4 times more likely to have
clinically significant depression than carers with START;
HADS-total = 2.10 (95% CI 0.51 to 3.75).
Small incremental QALY gain for START group; mean 0.042
(95% CI 0.015 to 0.071). (QALY = quality-adjusted life year)
Livingston et al BMJ 2013
START improved
carer mental
health and
health-related
quality of life
over 8 months.
START: outcomes at 8 months
Carers getting START had slightly but not significantly higher
costs (£252; 95% CI -28 to +565), adjusting for baseline.
Cost-effectiveness: £118 (€201) per 1-point change on HADS-
total; and £6000 (€7620) per additional QALY (quality-
adjusted life year) … measuring carer service use only.
Cost of START
was offset by
reduced use of
other services by
carers over 8
months. START is
cost-effective.
Cost-effectiveness at 8 months
Knapp et al BMJ 2013
Effects on carers:
o Better mental health: carers with usual support were 7
times more likely to have clinically significant depression
o Significantly better quality of life
Outcomes & cost-effectiveness at 24 months
Livingston et al Lancet Psych 2014
Effects on people with dementia:
o No differences in health status or quality of life
o Some delay to care home admission (not (yet?) significant)
Service costs go up in both groups over time; but care home
costs go up more for people in the usual care group.
Cost-effectiveness: START has better outcomes and doesn’t
cost any more … It is clearly cost-effective.
CST is a group intervention in
care homes & day centres for
people with mild-to-moderate
dementia: themed activities to
stimulate cognitive function.
Effective and cost-effective if
delivered bi-weekly over 7 weeks.
Maintenance CST (weekly for 24
weeks) improves QOL; in
combination with ACHEI meds it
improves cognition.
Also cost-effective over 24 weeks,
especially with ACHEIs.
Cognitive stimulation therapy (CST)
Woods et al Cochrane 2012; Orrell et al BJPsychiatry 2014; D’Amico et al, submitted
Home-based care
Worringly little evidence on
what works in home care.
Patterns of home support
provided to people with
dementia and their carers -
study led by David Challis
(reporting 2015)
Reablement home care – no
direct evidence for people
with dementia, but
Glendinning et al (2010) report
some success.
Glendinning et al SPRU/PSSRU report 2010; Hirani et al Age
& Ageing 2014; Henderson et al Age & Ageing 2014
What evidence there is
suggests quality of care
is highly variable, and
often very poor (e.g.
see recent report from
group chaired by Paul
Burstow).
Home-based care
Surprisingly little evidence on
what works in home care.
Patterns of home support
provided to people with
dementia and their carers -
study led by David Challis
(reporting 2015)
Reablement home care – no
direct evidence for people
with dementia, but
Glendinning et al (2010) report
some success.
Glendinning et al SPRU/PSSRU report 2010; Hirani et al Age
& Ageing 2014; Henderson et al Age & Ageing 2014
Telecare is widely seen as long-
term solution. However, today’s
evidence is not encouraging:
o WSD trial telecare for (all)
older people offers ‘small
relative benefits’ over usual
care, but is not cost-effective
(cost per QALY = £297,000).
So, are robots the future?
“Indirect economic evidence”: potential avoidable
hospital costs of people with dementia
• People w. dementia more likely to be admitted into hospital and, once admitted, stay longer (e.g. 78% more likely to be admitted for a UTI).
• “Additional” hospital costs have been estimated at 265GBP million per year for England.
• Main reasons for admissions of people w. dementia (compared with people without dementia) are falls and fractures, and respiratory and urinary tract infections (UTI).
• Improved care could potentially reduce these costs through improved hygiene, hydration, maintenance of mobility and picking up infections earlier.
CHKS (2013) Insight report. An economic analysis of the excess costs for acute care for patients with
dementia. London: CHKS.
Toot S et al (2013) Causes of hospital admission for people with dementia: a systematic review and
meta-analysis. JAMDA, 14(7), 463-470.
Case management
Evidence on case management is also mixed.
A recent Cochrane review by Reilly et al. (2015) concludes:
“There is evidence from good quality studies to suggest that
admissions to care homes and overall healthcare costs are
reduced in the medium term; however, the results at later
follow-up points were uncertain”
Reilly S, Miranda-Castillo C, Malouf R et al (2015) Case management
approaches to home support for people with dementia. Cochrane Database
of Systematic Reviews.
Policy aims in England:
o to build dementia-friendly communities
o to raise public awareness
Achievements:
o Rapid growth in numbers of individuals trained in dementia
awareness; plus schools, shops, banks, transport orgs, …
o Have attitudes changed? Yes but only modest improvement
o Similar evidence from other countries (e.g. Germany)
o World Alzheimer Report 2012 – still widespread stigma and
social exclusion of people with dementia
Attitudes and awareness
ADI World Alzheimer Report 2012: Overcoming the Stigma of
Dementia; von dem Knesebeck et al Int Psychogeriatrics 2014
Why do we have so little
economic evidence? (1)
• Research funding:
– Until recently only small amounts on dementia
research, and mostly on pharmaceuticals
– Bias towards “novelty” means no research on
“old interventions” (e.g. day care)
– Possible bias towards funding research on
interventions that are expected to be cost-
saving
Why do we have so little
economic evidence? (2) • Methodological difficulties:
- How “join” the impact of interventions on
people with dementia and their carers (costs
and outcomes)
- Measurement of Outcomes
- Understanding quality of life in advanced dementia
- Possible non-linear relationship between severity
of dementia and quality of life
- Getting to grips with the impact of proxy
respondents (and type of proxies)
How do we value joy?
Merton Dementia Hub
Presentation to conference on Life After Diagnosis
15 July 2015
Simon Williams
Director of Community and Housing, Merton
Where we were (2012)
• One specialist day centre with 40 on roll
• Services concentrated in one or two wards
• Low rates of diagnosis (36%) compared to the
best in the country ( LB Islington 72%)
• Little support on offer to anyone after a diagnosis
until they met “substantial” criteria
• Typical story:” why did we have to wait so long to
find out about what could help?”
This is what it looked like
What we did
• Listened to existing day centre users and carers
• Looked at good practice (Stirling University)
• Went back to market with new requirements based on
outcomes, quick and collaborative response to changing
needs, access without prior social care assessment
• Pilot for 3 years to see what would happen
• Awarded to Alzheimer's Society
• Won £350k from dementia friendly environment
programme
• Not all easy: resistance to change and concerns about
open access
16 Services (include)
• Dementia Support Work
• Dementia Adviser
• Singing for the Brain
• Carers Support Groups
• People with Dementia Support Groups
• Carers Information and Support Programme (CrISP)
• Life After Diagnosis Information Programme for people
with dementia
• Cafés around the borough
• Connecting Communities Programme (DoH volunteering
BAME initiative)
What’s happened? • Now 568 people being supported (as at April 2015)
• Range of support (next slide)
• Memory clinics now held in the Hub
• Diagnosis rates now at 60%, GPs can see the point
• Environment that people deserve, funders happy
• Anchors Dementia Action Alliance, raised awareness outside health
and social care (e.g. 25 councillors trained as dementia friends)
• Provider has database to identity gaps in provision
• Sits alongside other initiatives like new generation technology and
increase in community nursing support
• Some early evidence of reductions in crisis admissions to care
homes
This is what it looks like now
This is what it looks like now
This is what it looks like now
Not just opening a building, but access to
a road map and quick support
Some reflections on social care and life
after diagnosis
• Great example of the social model of disability in action: we can’t yet
cure the innate condition but can do so much to lessen the disability
• We all have to give more control to our customers and challenge our
own professional bottlenecks and pre-occupations
• “Social care” in its widest application: not just segregated services but
supporting people to live a full life in dementia friendly communities
• Prime candidate for integrated commissioning and pooled budgets
• Timely diagnosis essential for social care outcomes like choice,
control, access to advice and information, promoting independence
Joint Commissioning Collaborative
Person centered dementia care
in a day service setting
Woodville Centre at Ham
Jenny Bailey: Manager Woodville
Aileen Jackson: Joint Commissioning Manager
London Borough of Richmond & Richmond CCG
Joint Commissioning Collaborative
Overview of Presentation
Living well with dementia
Assessing needs
Meeting assessed needs/support plans
Woodville & person centered care
Tribute to living well
Joint Commissioning Collaborative
Key to good post diagnostic support
Think Carer and Person with dementia
Health and Social care solutions
Be informed
Take responsibility
Partnership working
Continually look for solutions ask for feedback
Joint Commissioning Collaborative
Living well with dementia Primary Care
Memory clinic & dementia advisor
Commissioned preventative services
Community Independent Living Service
Richmond Carers Hub
Gadgets and simple changes to the home
Specialist day service /Shared Lives/Home support
Dementia Action Alliance
Use Insert > Header & Footer to amend for all slides
Joint Commissioning Collaborative
Assessing needs
The Care Act requires the needs assessment to
address ‘Wellbeing’
What’s important to the service user and what’s
important for them
Includes a good and a bad day
Carers ‘Wellbeing’ needs to be met
Use Insert > Header & Footer to amend for all slides
Joint Commissioning Collaborative
Meeting assessed needs Need Support plan
To be safe at home Gadgets!
To be less isolated /enjoy life CILS/ DAA/friends family
To have regular meals CILS/ MOWs /DPs /friends /family
To have a break Shared Lives /Day Service /Sitting
Service Carers Hub /Care Home
To be active Leisure services Health walks /F&F
To be informed Richmond dementia guide /web
links
To stay physically well Carers Health checks /GP
Help with personal care DPs/PB/Home support /F&F
Joint Commissioning Collaborative
Woodville hours of operation
365 days a year
Escorted transport provided if required
Flexible opening and closing times
Carer inclusive
Joint Commissioning Collaborative
Enjoyment for the moment
Joint Commissioning Collaborative
Meeting needs in a day service
Introductory day
Personal history
Person Centred Care in practice
Daily planning meeting
Maximising potential and minimising stress
Joint Commissioning Collaborative
Daily Planning Meetings
Person with
dementia
Activities friendships relaxation keyworker
Medication dentists flu
jabs
Food
Hair chiropody hygiene
Moving & handling ,
arriving and leaving
Joint Commissioning Collaborative
Bowled over
Joint Commissioning Collaborative
Daily Sparkle
Joint Commissioning Collaborative
Say Yes
Carer support
Reducing stigma
Volunteers
Intergenerational Magic
Joint Commissioning Collaborative
Innovation
NHS Continuing Health Care
Flu vaccinations
Dentist
Chiropody services
Afternoon workshops
• Everyone has chance to attend two sessions
• Care planning – Great Russell Suite
• Peer support – Woburn Suite
• Scorecards – Bloomsbury Room
Afternoon workshops
• Everyone has chance to attend two sessions
• Care planning – Great Russell Suite
• Peer support – Woburn Suite
• Scorecards – Bloomsbury Room
London Dementia Strategic Clinical Network
Date
Person-centred care plans
Dr Hugo de Waal and Dr Sujoy Mukherjee
Co-chairs of the Dementia SCN
post diagnosis support workstream
Person-centred care plans
• WHO?
• Who does it now and ideally, who should it be?
• WHAT?
• Top 3 things that are different for a care plan for someone with dementia
• RISKS
• How can care plans help organisations manage risk?
• How can care plans help relationships between individuals and providers?
Person-centred care plans
• Write down 1 key thought:-
• What would you want if you had dementia?
• OR
• What have you seen that has been that has
been inspirational?
Reducing Isolation – peer support and circles of support 15 July 2015
@HINSouthLondon
Dementia Peer Support Project
Background to the project
Born out of engagement exercise at launch
Routinely advocated in policy and strategies across the UK
Supports the Government’s Detection Agenda: Post-diagnostic support
Need reinforced by mapping exercise: variation across South London
• provision, access, specific groups (BAME, younger people etc), exit plan
Not all want a structured approach to peer support – just opportunities to meet
others in a similar situation
Most want to continue taking part in social groups & activities - but dementia can
lead to social isolation
Lots of resources but spread across multiple organisations
Challenge: Funding and weak economic evidence
Dementia Peer Support Project
Our whole system approach to peer support
Specialist & structured peer support (usually time
limited)
Dementia cafes or informal clubs where people can
drop in to meet others in a similar situation
Community groups, clubs & societies which are able to
accommodate people with dementia
Up-to-date information for people & carers about local
services and supports – how to access them
Dementia advisors / navigators who are able to support
people through the ‘system’ – connecting them to their
communities.
Community organisations and specialist peer support groups both have
an important role to play in supporting people with dementia to live well.
Dementia Peer Support Project
Introducing our Resource Pack
Who is it for?
Statutory, voluntary, and
community sectors
Those involved in setting up,
running or involved in peer
support groups or social /activity
groups which include people with
dementia
Older people groups, clubs etc.
that want to support people with
dementia better
People who commission or fund
services for people with
dementia
Dementia Peer Support Project
What is in it?
Evidenced based guidance
Statistics
Relevant Policy & Research
Case studies Films
Feedback and Spread
European’s Foundation Initiative on Dementia
South London
2330
Downloads
Dementia Peer Support Project
Summer 2015 updates to the resource pack
Watch our films on peer support
Views from people with dementia and their families
https://vimeo.com/123402358
Views from facilitators and volunteers
https://vimeo.com/123098508
Contact
Amy Semple
Project Manager – Dementia
020 7188 7188 x 55405
View the Resource Pack:
http://www.hin-southlondon.org/resources/peersupportpack
people lives communities
Circles of support for people with
Dementia
Madeline Cooper-Ueki
July 2015
people lives communities people lives communities
Circles of support for people with
Dementia
Madeline Cooper-Ueki
July 2015
people lives communities
Circles of support work
Worked across four locations – Mid Devon, West London, Dorset and Hampshire in partnership with Innovations in Dementia
Department of health funded to test approach
Working with local voluntary and statutory agencies inc memory clinics, MH Trusts etc. to share and test approach
Provided facilitation of circles as well as skills development
Based on person-centred approaches
Tracked stories, learning and outcomes for people and families
A group around
a person, led by
them/their
wishes, who
support them to
have the life they
want. Usually
natural and
service people.
people lives communities
A few key learning points
Circles work really well if person supported to create one soon after diagnosis- maintaining rather than building connections
They work best when there is a facilitator who is passionate about supporting people with dementia to live well and keep them at the centre of all discussions and decisions
Circles provide great support to families as well as the person
People who were supported to develop a circle had more activities of choice going on, were helped to maintain employment, and developed new connections
Peer support or connection was sometimes the preference
people lives communities
Interested in learning more?
Information
http://www.ndti.org.uk/major-projects/current/circles-of-
support-for-people-with-dementia/
Films on page above or:
https://www.youtube.com/watch?v=efMYwFg-WWg
Keeping connections leaflet
http://www.ndti.org.uk/uploads/files/Keeping_your_connecti
ons_leaflet.pdf
Contact: [email protected]
Discussion
1. Do you have any good examples of dementia peer support in your
area?
2. What conditions need to be in place to make it work?
133
Laura Stuart, Frailty Programme Manager, UCLPartners
Developing a Value Scorecard for Dementia
London Dementia SCN event – 15th July 2015
What is a value based scorecard?
• Value = “outcomes that matter most to patients and populations per pound spent”
• Two main aims of the scorecards:
o To understand and measure improvement over time
o To support learning from others
• Must have a whole systems approach
• Starting with routinely collected metrics and selecting “core” outcome/resource measures
• Can supplement with locally collected measures
The current context: a focus on outcomes, value and a
whole system approach
• ‘we need to manage systems – networks of care – not just organisations’
• ‘we should learn much faster from the best examples’
• ‘comprehensive transparency of performance data’
• ‘to reduce variations in where patients receive care, w will measure and publish meaningful and comparable measurements for all major pathways of care for every provider, including community, mental and primary care.’
NHS Five Year Forward View, 2014
‘Both quality and cost can be measured in a number of different ways, and the impact of their relationship is often spread widely across a health system and over time. One improvement in quality may take years to save money, while others may never save money at all. Another improvement may save money for one provider but shift costs elsewhere, while others may expose a new cost that was previously being met outside the health system.’ Kings Fund, Better Value in the NHS, 2015
‘Outcomes-based commissioning aims to achieve better outcomes through more integrated, person-centred services and ultimately provide better value for every pound spent on health and care.’ NHS Confederation, Beginning with the end in mind: how outcomes-based commissioning can help unlock the potential of community services, 2014
Excerpt from the current draft of the Frailty Scorecard
ASCOF.
Adult Social
Care Survey
Annual Percentage of total respondents who answered all qestion
3a of Adult Social Care Survey who answered ‘I have as much
control over my daily life as I want’ or “I have adequate
control over my daily life”.
GP Patient
Survey
Bi-annual Number of people responding "very confident" and "fairly
confident" of total number 75 or over who answered question
33: "confidence in managing own condition.
HSCIC
(ASCOF)
GP patient
survey
Percentage of total people 75+ who answered "very good" or
"good" to question 21d "rating of GP involving you in decision
about your care"
ONS Monthly Number of deaths occurring at home or in care homes / total
number of death people 75+.
"I can maintain social contact as much as I want"
" I am supported to be independent "
Proportion of people dying in their usual
residence aged 75+.
"I want to make my own decisions, with advice and support from family, friends or professionals if I want it"
Proportion of people 75+ who feel
involved in decisions about their care.
Decision-making
Percent of older adults who have as
much social contact as they would like
Community interactions
Proportion of people over 65 who feel
they have control over their lives
% Proportion ofpeople 75+ confident to
manage their own health
Promoting Indendence
I’m Still Me: A Narrative for co-ordinated support for older people
Initial version drawn up by linking:
• work previously carried out within UCLP
• considering relevant National Measures
• with the frailty scorecard
• with SCN ‘pathway’ :
– effective diagnosis
– living well with dementia
– post diagnosis and coordinating care
– improving quality of care
– + prevention
– +end of life
• with the ‘I statements’ from the Dementia Declaration
Initial version of scorecard discussed at frailty scorecard meeting in December 2013.
Steering group established:
• met several until October 2014
• Further reiterations of scorecards
• Publicly available data plotted onto graphs
Review of UCLP scorecards
Discussions with several partner organisations
The Dementia Scorecard – progress to date
Excerpt from the current draft of the Dementia Scorecard
Stage of pathway
Relevant ‘I’ statements
(Dementia Declaration)
Metrics Comments
1. Prevention -Primary care health checks (40-74 years old)
www.healthcheck.nhs.uk/interactive_map/london_and_integrated
_region_and_centre/
1. Effective diagnosis
(early actions)
-I have received an early diagnosis,
which was sensitively
communicated.
-Time taken from referral received by the trust
to assessment
-% of patients receiving diagnosis within 12
weeks of start of assessment.
-Prevalence (actual vs expected)
-Patient experience of diagnostic process
-local measures
-local measures
-NHS England, dementia prevalence rates
-local measures – all have to collect but no standard measures
1. Living well with dementia
(Supporting patients
and carers/
optimising
therapeutic
interventions/
supporting people at
home)
-I have support that helps me live my
life.
-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 member of family,
community and civic life.
-I feel supported and understood by
my GP and get a physical check-up
regularly without asking for it.
-Antipsychotic prescription rates
-% of people with dementia, on an anti-
psychotic, having a three monthly medication
review.
-The percentage of patients diagnosed with
dementia whose care has been reviewed in a
face-to-face review in the preceding 12
months
-Patient experience of feeling supported
-% of people who felt better able to manage
their condition.
-?DoH, annually/ ?RCpsych audit
-?as above/ ?supplement with local measures
-GMS OF. However does not state what should be reviewed - -
?ADLs, meds. CHECK SOURCE
-local measures
-GP patient survey (but not dementia specific)/ local measures
Challenges
• Ensuring whole system approach:
o How to define a population
o Ownership
o Mental health and geriatrician pathways
• Data:
o Frequency of data
o Sensitivity to show change
o Cost metrics
o Difficulty in extracting dementia specific data
o Variation in terminology
• Ensuring patient centredness
o Subjectivity
o Patient experience measures
o Addressing complex issues of loneliness, social isolation, functional independence
• Fear:
o Permissions to use the data
o Fear of judgement
• Ensuring it is sustainable and useful
The challenge of data
% feeling supported
Next steps
Discussion:
• What do you see as the main advantage of the scorecards?
• How do we address some of the challenges?
Could your organisation pilot any of the metrics?
For more information please contact: www.uclpartners.com @uclpartners
Laura Stuart, Frailty Programme Manager
@laurajstuart
London Dementia Strategic Clinical Network
Date
Supporting people with dementia: Life after diagnosis
