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Transcript of Dementia challenge conference presentations
NHS South of England
Dementia Challenge Conference
Tuesday 29 May 2012
Welcome and introduction
Dr Geoffrey Harris, Chair,
NHS South of England
Key note address
followed by Q&A session
Paul Burstow,
Minister for Care Services
The perspective of a person with
dementia
Dr Jennifer Bute
A glorious opportunity
Privilege of 3 Perspectives: GP-Carer-Patient My family and how I got my diagnosis
Memory & what I believe can be done
What I did not know as a GP & hints
I will cover
5 years
to get a diagnosis
Peter Garrard did work on
picking up clues on early signs
of Dementia in literature and
speeches
Iris Murdoch & Harold Wilson
reading aloud - mental arithmetic - writing
Prof Ryuta Kawashima
Unused muscles atrophy unused neurons die
Hallucinations Time Travel
As a GP I never asked
about hallucinations
I did not understand Time
Travel, visual spatial issues
There is always a reason
Feelings remain
Patterns continue
Clues
Coming on the wrong day
Misunderstanding Rx
Using items inappropriately
Loss of weight
Getting lost when driving
A Choice
How we view Dementia
What we do about it
How we support others
www.gloriousopportunity.org
The Dementia Challenge
Peter Watson
Uniting Carers Dementia UK
The Carer’s Perspective
The Dementia Challenge
What’s important to help a carer cope
What it’s like being a carer of a person with dementia
What you can do to help
The Dementia Challenge
The Dementia Challenge
Navigation
Work &
Interests Conversation
Social
Interaction
Forgetfulness
Appearance
Becoming
a Danger
Stopped
Caring
About Me Personal
Hygiene Continence
The Dementia Challenge
Frustration
Annoyance
Anger
Dislike
Worry
Uncertainty
Denial
Guilt
Pain
Grief
Despair
Sadness
Change in Personality
I lost my beautiful, happy, jolly, friendly, loving, caring, wife
The Dementia Challenge
Struggle to have a life of your own
Struggle to earn a living
Lack of sleep
Funding to pay for help is a lottery
Loss of friends
Loss of social contact
The Dementia Challenge
Important things to help a carer cope
Timely Information Education / Advice
Financial Support Quality services
Respite Support
The Dementia Challenge
Ring-fence money to help carers
Do the straightforward practical things well
3 Things you can do to help
Be INNOVATIVE & provide emotional & psychological support for carers
The Dementia Challenge
Key note addresses
Question and answer session
Better research
Dr David Cox, Deputy Director –
Research Finance & Programmes
Research & Development Directorate,
Department of Health
www.dendron.org.uk www.dendron.org.uk
Delivering better research (or delivering more research!)
Professor Roy Jones
Dementia Research Director, SW DeNDRoN
RICE Bath and NHS Bath & NE Somerset
www.dendron.org.uk www.dendron.org.uk
The PMs Challenge on Dementia
• Driving improvements in health and care
• Dementia friendly communities that understand how to help
• Better research
All change and actions should be underpinned by research,
eg change in acute hospitals, changes in social care, raising
awareness, new tools for diagnosis, assessment and
treatment.
Individual initiatives are important but often based largely on
the person(s) carrying it out and their enthusiasm – research
demonstrates its generalisability, cost-effectiveness etc
It is crucial therefore to integrate research with practice
www.dendron.org.uk www.dendron.org.uk
Dementia Research in the South
• Pre-DeNDRoN
– 2 of the oldest memory clinics in the UK: Bristol, Bath
– 3 universities with a strong track record in dementia research:
Bristol, Oxford, Southampton
– 3 of the best established and most well-known UK centres for
dementia commercial clinical trials: Bath, Southampton, Swindon
• Post-DeNDRoN (since 2006)
– Three Local Research Networks (LRNs): South West, South
Coast and Thames Valley
– Extended opportunities with other memory clinics
– New universities developing dementia research portfolios
– More centres for commercial and non-commercial research
www.dendron.org.uk www.dendron.org.uk
6
(0.1%)
74
(0.6%)
2
(0.0%)
54
(0.7%)
81
(0.7%)
53
(0.5%)
215
(2.4%) 53
(1.1%)
816
(5.8%)
143
(0.6%)
67
(0.4%)
58
(0.3%)
NIHR Portfolio dementia research activity
across NHS South of England 2009-2012
Number of people in studies Total 1900
(Percentage of dementia prevalence) Average 1.1%
www.dendron.org.uk www.dendron.org.uk
Top 10 recruiting trusts in region: 2009-2012
Oxford Health NHS Foundation Trust 506
Oxford University Hospital NHS Trust 310
NHS Bath and North East Somerset 174
Berkshire Healthcare NHS Foundation Trust 165
Southern Health NHS Foundation Trust 148
Sussex Partnership NHS Foundation Trust 114
Kent & Medway NHS & Social Care Partnership Trust 85 Avon and Wiltshire Mental Health Partnership NHS Trust 73
Devon Partnership NHS Trust 71
NHS Dorset 54
www.dendron.org.uk www.dendron.org.uk
��
Delivering research to improve care: GERAS
“The study team are delighted with the UK
performance. I'm in no doubt, DeNDRoN played a critical
role in driving delivery and the UK success story.”
Dr Pearson
Dr Korenteng Dr Loughlin
Dr McCleery
Prof Jones
Dr Dukes
Dr Simpson
www.dendron.org.uk www.dendron.org.uk
��
Delivering research to improve care: DOMINO (Donepezil and memantine for Alzheimer’s disease,
New Engl J Med 2012; 366: 893-903 )
“For the first time we have robust and compelling evidence
that treatment with these drugs can continue to help patients
at the more severe stages”
Dr Pearson
Dr McShane
Prof Katona
Prof Jones
Prof Holmes
Prof Howard, King’s
www.dendron.org.uk www.dendron.org.uk
The portfolio is growing
• The NIHR has just completed a first-ever themed call for
dementia research proposals with up to 18 projects being
funded ranging from work on better diagnosis to
improving care in a wide range of settings (individual's
own homes, residential care & specialist hospitals)
• DeNDRoN gave advice on the feasibility and deliverability
of the proposals including site-level input and patient &
public involvement. We are well equipped to support
these projects and to work with both old and new centres
• DeNDRoN research studies in dementia in England have
grown from 25 in 2006/07 to 81 in 2011/12 with 64
studies open to recruitment in May 2012
www.dendron.org.uk www.dendron.org.uk
Embedding dementia research in the NHS
Strategic Collaboration
• Clinical Commissioning Groups (CCGs)
• Clinical Senates
• Academic Health Science Networks (AHSNs)
Developing Registers in dementia/ memory clinic services
• 10% participation is the goal
• Memory service accreditation
• Nationally consistent system (RAFT: Recruitment and
Feasibility Tool)
Medical academics
• must “drive research into the DNA of the NHS”*
*Prof Michael Rees – BMA Medical Academic Staff Committee, May 2012
www.dendron.org.uk www.dendron.org.uk
DeNDRoN RAFT: a nationally consistent
system for supporting participation in research
• Patients and carers offered - as part of core clinical
pathway – opportunity to register interest in being
contacted about appropriate research
• Routinely collected data used to conduct feasibility
assessments and to identify people for research
• Patients contacted according to the ethics approval and
research governance arrangements for specific studies
DeNDRoN is leading a partnership of Trusts, Universities,
Charities and commercial suppliers to deliver the tools
necessary for NHS dementia services in the region to
participate
www.dendron.org.uk www.dendron.org.uk
Why get involved with research?
• Good for patients and their families
– Like to know that their medical team are aware of latest research;
chance to get the latest treatment
– Get more contact than usual with medical and other staff
– Altruism: like to feel even if not helping them that it may help others
(including their own family)
• Good for the NHS
– Only way to properly evaluate any new initiative or treatment
– Only way to develop new medicines, treatments, investigations etc
– Good to be embedded in the philosophy of every NHS organisation
– Research can provide funds and extra staff of a high calibre
• Good for society and the wider economy
www.dendron.org.uk www.dendron.org.uk
Working together to deliver on the challenge
• The region has solid research foundation to build on
• The number of studies is increasing
• Research needs to be embedded in core NHS structures
• Each trust needs to run a register
Next steps:
• All NHS trusts to contact LRNs re RAFT
• Leaders developing CCGs, Clinical Senates and AHSNs
to include LRN Directors/ Research Directors in process
• If not a centre for a study, consider working with nearby
centres (to maximise patient involvement but minimise
travel)
www.dendron.org.uk www.dendron.org.uk
Contact
Helen Collins
Research Network Manager
Thames Valley DeNDRoN
T: 01685 01865 234607
Email: [email protected]
David Higenbottam
Research Network Manager
South Coast DeNDRoN
T: 023 8047 5123
Email: [email protected]
Mary Griffin
Research Network Manager
South West DeNDRoN
T: 0117 3784239
Email: [email protected]
Better Research
Question and answer session
Lunch and exhibition
Improving health and care
Sir Ian Carruthers OBE
Chief Executive NHS South of England
and Chair, Dementia Champion Group
Dr Kate Jefferies – Psychiatrist and EQ
Dementia Lead
Dr Terry Lynch - GP and EQ Primary Care
Dementia Lead
How Clinical Measurement Drives
Improvement in Assessment and
Diagnosis of Dementia
Diagnosis of Dementia
43% of people with Dementia in
the UK have been formally
identified
SEC Dementia Prevalence 2011 (Source: Mapping the Dementia Gap 2011 Alzheimer’s Society)
0%
5%
10%
15%
20%
25%
30%
35%
40%
45%
50%
SE
C S
HA
Brighto
n &
Hove
PC
T
E S
ussex D
ow
ns
& W
eald
PC
T
Hastings &
Roth
er
PC
T
E &
Coasta
l K
ent
PC
T
Medw
ay P
CT
W K
ent
PC
T
Surr
ey P
CT
W S
ussex P
CT
Diagnosis Rates – length of time
taken to receive a diagnosis
Up to 12 months 22%
1 – 2 years 37%
3 – 4 years 23%
5 – 6 years 5%
Over 6 years 3%
Don’t know 5%
Source: Dementia 2012: A National Challenge, Alzheimer’s Society
Usefulness of Diagnosis • People will have control over their lives
and support to do things that matter to
them
• People will have access to adequate
resources that enable choice of where and
how they live
• People can make decisions about the care
they want in later life
Clinical
Indicator
Patient Reported Outcome
Patient
Experience
Triangulating measures
FILM CLIP
Improving Outcomes Pneumonia 2010 Data 2011 Data
Reduction in Re-admissions 15.69% 15.00%
Reduction in Mortality 28.70% 25.36%
Reduction in length of Stay 10.24 9.75
Heart Failure
Reduction in Re-admissions 21.10% 21.07%
Reduction in Hospital Admissions (per 1000 admits) 5.74 5.47
Reduction in Mortality 17.07% 17.20%
Reduction in length of Stay 10.47 10.27
Hip & Knees
Reduction in Re-admissions 8.00% 7.28%
Reduction in Mortality 2.30% 2.07%
Reduction in length of Stay 9.07 8.44
AMI
Reduction in Re-admissions 17.33% 16.11%
Reduction in Mortality 11.62% 10.87%
Reduction in length of Stay 7.14 7.16
P<0.05
P<0.05
Challenges
• Data sharing across all communities
• Different processes
• Different information systems
• ICD10 coding not used in all organisations
• Engagement with Primary Care & CCGs
Not a sprint
A marathon
Dementia Care in the acute hospital
Dr Chris Dyer, Consultant Geriatrician
Aims
1. To highlight improvements we can all make
in dementia care in hospital
2. To describe the RUH ward charter mark as a
driver for change
Common clinical situation Mrs Jones: 83 year old lady found on the floor
On admission, she seems to be talking to herself, but it is hard to understand what she is saying.
She has an anxious demeanour and repeatedly pulls at her nightclothes.
She argues with the staff, angrily refuses to have a blood sample taken, and won’t eat her breakfast.
Drivers for improved care
1. Size of problem:
670,000 people with dementia in England
A quarter of hospital beds
2. Evidence of inadequate care
CQC inspections
Recent hospital scandals
National dementia audit
3. National and NHS South priority
4. RUH Quality Accounts & CQUIN
Dementia Strategy Group
Kicked off by workshop 2008
Enthusiasts engaged
Alzheimer’s Society and Alzheimer’s Support
involved
Some early wins
RUH Dementia Strategy
Improved quality of care in general
hospitals
Awareness training for all
Review Paperwork
Develop MHLT Protocol for
referral
Identify cognitive
assessment tool
Develop ward based training
packages
Early assessment carers and
family
Develop Pathway
Some of our team
Emma Flannery, Rena Cottis Alzheimer’s Society
Stephany Bardzil Alzheimer’s Support, Wiltshire
Jane Davies Matron for Dementia Care
Sue Leathers Matron for Older People
Jacqui Young Quality Improvement lead
Sharon Manhi Head of Quality Improvement
Jon Willis Ward Manager
Alice Rigby Senior Sister
Theresa Hegarty Head of Patient Experience
What is needed?
1. Enthusiasm and
commitment
2. Clinical – executive
partnership
3. Trust board engagement
1. Respect, dignity and appropriate
care
5. Nutrition and hydration needs
are well met
7. Ensure quality of care at
the end of life
6. Promote the contribution of
volunteers
4. A dementia friendly hospital
environment; minimising
moves
2. Agreed assessment,
admission and discharge
processes with a needs specific
care plan
3. Access to a specialist older people’s mental
health liaison service
8. Appropriate training and workforce
development
What are we proud of?
Good engagement, dementia events
Strong links with carer groups
Volunteer befriending scheme
Environmental change and funds
Ward charter mark a key driver
The RUH dementia charter mark
Set of standards developed by RUH Dementia
Strategy Group
Awards for wards and departments who have
made progress in achieving the standards
Incorporated into NHS South West standards
Key points
Patient focused and “stretching”
Within the ward’s power
17 categories
Assessment by observations of care and
audit by expert team
Standard - Respecting and caring
for people with dementia
Method of Measure
1.
All staff talk to patients and visitors in a professional, caring and courteous manner
Observations of care
Feedback to the ward in terms of compliments and complaints
2. Patient care is person-centred as evidenced by observation of staff interaction with patients
Direct ward observation
3. Appropriate risk assessment will be done on all patients who are at risk of leaving ward
Medical records check
4. All patients newly prescribed anti-psychotic medication will be referred to Mental Health Liaison Service.
Check drug charts with ward pharmacist
Standard –Meeting nutritional needs
Method of Measure
1.
All patients have a weight assessment on admission and at discharge (95% standard)
Nursing records
2. All patients will be assessed using the MUST tool – 95% standard
Nursing records
3. There should be flexibility in provision/ presentation of food – e.g. Snacks/ finger
foods offered; recognising some patients may take a long time to eat a meal
Inspection
4. Mealtimes – recognition of need to protect; carers encouraged to visit if they wish to
Lunchtime review
5. Staff will ensure all patients are able to reach and to eat their food & drink with assistance given if necessary
Inspection
Standard – The Ward Environment
Method of Measure
1.
Signage must be appropriate for people with dementia
Ward audit using tools of National audit
2. Patients are able to see a clock from their bed area
Direct ward observation
3. Boredom is prevented by regular ward activities
Ward review and discussion with staff and patients
Standard – Suitability of staffing
Method of Measure
1. >50% of staff to have attended formal dementia
training in last 2 years
Review of training roll
Traffic Light Status of Spreading: Dementia Charter Mark: MIDFORD WARD
Measure Measure description Status Measurement method Detail / Comments
Respecting and Caring for People with Dementia
RCPD 1 There is a system to detect cognitive impairment in relevant patients on the ward
Ward inspection of notes Use of cognition screening
Good use of forget- me -not flower. Patients with FMN all had MMSE. Also evidence of documented capacity assessments for patents with dementia.
RCPD 2 There is literature on the ward that can be understood by patients with early dementia and that can be used by their carers, and is accessible e.g. on ward displays
Review of literature
Limited literature available for patients and carers. Display about dementia on ward notice board.
RCPD 3 All staff talk to patients and visitors in a professional, caring and courteous manner
Observations of care Feedback to the ward in terms of compliments and complaints
Staff professional, courteous, polite and appropriate in all interactions
RCPD 4 Patient care is person-centered as evidenced by observation of staff interaction with patients
Direct ward observation Excellent interactions between all staff, nursing, allied and support with patients noted. Supervision of a group of patients with dementia by HCA witnessed as part of assessment.
RCPD 5 Patients and carers feedback demonstrates high levels of satisfaction Standard = 90%
“Patient Experience Tracker” and / or compliments/ complaints
Patient satisfaction cards have been in use for the past 2-3 months. No feedback as yet. Not part of PET scheme. Only 1 new complaint in past 3 months.
RCPD 6 Appropriate risk assessment will be done on all patients who are at risk of wandering Standard = 90%
Medical records check
All dementia patient records checked and appropriate risk assessments in place with updates where necessary.
RCPD 7 All patients newly prescribed anti-psychotic medication will be referred to Mental Health Liaison Service. Standard =90%
Check drug charts with ward pharmacist
Evidence of mental health liaison referral for patients newly prescribed anti psychotic medication.
The Ward Environment
WE 1 Signage must be appropriate for people with dementia
Ward audit using tools from National Dementia Audit
WE 2 Patients are able to see a clock from their bed area
Ward check New clocks have been ordered for all bays and side rooms.
WE3 Boredom is prevented by regular therapeutic sessions or activities
Ward review – wards may include many activities such as art therapy, music, gentle hand massage etc
Therapeutic activities include a Wednesday morning coffee club run by the OT’s, PAT dog, music therapy. Cards, drafts & jigsaw puzzles on ward. At the time of assessment, a group of patients with dementia were sat in a bay all around a table conversing & looking at magazines.
Meeting Nutritional Needs
MNN 1 All patients will have a weight assessment on admission and at discharge -95% standard (exceptions: terminal illness, day cases, short elective or impossible to weigh clinically)
Nursing records
Levels of award and prizes
Gold: £1000 to ward for training & team of the month
Majority green, occasional yellow, no more than one amber, no red
Silver Majority yellow with some green and amber
Bronze Majority amber
Certificates signed by Director of Nursing and External
Assessor
Progress
Gold – One ward ( Midford)
Silver - Six wards ( 3 older people, Medical Assessment Unit,
Endocrine, Orthopaedics)
Gold Award -
‘We’re so proud that our striving
to do the very best for our patients is being recognised’
Terry Bolton, Ward manager
Known dementia
All emergency admissions aged over 75
Dementia
pathway
Care as
usual
Has the person
been more
forgetful in the
last 12 months
to the extent
that it has
significantly
affected their
daily life?
No known dementia
Diagnostic
assessment
Dementia CQUIN: FAIR (Find, Assess and Investigate, Refer)
Feedback
to GP
Positive
Inconclusive
Negative
Diagnostic
review, if
indicated
1
2
3
Referral
1 Find 2 Assess and Investigate 3 Refer
Clinical
Diagnosis of
delirium
no yes
no
yes
What is needed?
1. Enthusiasm
2. Executive – clinical partnership
3. Clear timeline for action and focus
Publicity
Carers rate RUH best
CARERS SAY RUH BEST FOR DEMENTIA CARE
Community Based Reablement
Ojalae Jenkins
Joint Commissioning Manager
Buckinghamshire County Council
Whole System Challenge
Buckinghamshire Citizen’s Jury
Community Based Reablement
Whole System Challenge
Crisis Success
Buckinghamshire Citizen’s
Jury
• Selection
Process
• Witnesses
• Scrutiny
Buckinghamshire Citizen’s
Jury
The Question?
We want dementia patients
and their families to receive
the best care possible.
Considering the services
we currently have in
Buckinghamshire, and what
we know is ‘good practice’,
which services does the
Jury believe should be
prioritised over the next 18
months for development?’
Buckinghamshire Citizen’s
Jury
The Verdict:
• Providing people with
dementia and their carers
(one pack) information at
the point of diagnosis.
• The need to ‘de-stigmatise’
dementia. This they felt
would go a long way in
terms of encouraging people
to seek help at an early
stage.
Community Based Reablement
Approach
Philosophy
Empowerment
Rebuild Confidence
Learning / Relearning
Community Access
Outcome Focus
Dynamic
Health and Well-Being
Social Model
Innovation in Buckinghamshire
Social Care Surgeries
in conjunction with
Thames Valley Police
Rapid Access and
Prevention Service
Movers and Shakers
To finish... It’s all
about...
Opportunity
Working Together
AND
Empowerment
Improving health and care
Question and answer session
Improving health and care
Roundtable discussion
Break
Raising awareness and dementia
friendly communities
Jeremy Hughes, Chief Executive,
Alzheimer’s Society and National
Taskforce leader
Ian Sherriff MA CQSW DMS Dip Cll
University of Plymouth
Dementia Friendly Communities
Prime Minister stated, ‘We are encouraging
more businesses to join this fight-back. I’m
delighted to see the progress being made
here. Already 20 big organisations like
Lloyds Group, Tesco and E.ON have signed
up to become more dementia friendly – and
over the coming months I want to see many
more follow suit.’
Without the sense of Caring there can be “No”
Sense of Community
►To develop Dementia Friendly Urban and
Rural Communities, that recognise the
great diversity among individuals with
dementia and their carers, promote their
inclusion in all areas of community life,
respect their decisions and lifestyle choice,
anticipate and respond flexibly to their
dementia related needs and preferences.
Devon Parish Councils around the Yealm
► Wembury
► Brixton
► Yealmpton
► Newton & Noss
► Holbeton
► The Yealm Project has: A Committee, Funding Stream for worker, Constitution Aims, Objectives, Work out puts for years 1 and 2 And a Bank Account
Plymouth Dementia Action Alliance
To develop the Plymouth Dementia Action Alliance
from the following groups within the city:-
Charity/Voluntary Agencies, Criminal Justice System,
Emergency Services, University of Plymouth
Digital/Communications/Networks, Health Care Sector,
Leisure/Tourism,
Local Authorities/Political Parties, Retail Sector, Transport,
Utility Companies,
Financial Sector, Church/Faith Communities, HM Forces,
the Press.
Examples of Organisations Support
►The Naval Base
►Naval Families Service
►Parish Councils
►City Council
►City Retail Sector
►WI
►Dartmoor Rescue
►Health and Social Care/GPs
Raising awareness and dementia
friendly communities
Question and answer session
Raising awareness and dementia
friendly communities
Roundtable discussion
Closing comments
Dr Geoffrey Harris, Chair, NHS South
of England