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 I will cover Memory & what I believe can be done What I did not know as a GP & hints

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

The Carers Perspective

Peter Watson Uniting Carers Dementia UK

The Dementia Challenge

What its like being a carer of a person with dementia

Whats important to help a carer cope

What you can do to help

The Dementia Challenge

The Dementia Challenge

Navigation
Work & Interests

Conversation

Forgetfulness Social Interaction Appearance Becoming a Danger

Personal Hygiene

Stopped Caring About Me

Continence

The Dementia Challenge

Frustration Denial

Annoyance

Guilt

Anger

Pain

Change in Personality
Dislike Grief I lost my beautiful, happy, jolly, friendly, loving, caring, wife Worry Despair

Uncertainty

Sadness

The Dementia Challenge

Struggle to have a life of your own

Lack of sleep

Struggle to earn a living

Loss of friends

Funding to pay for help is a lottery

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 3 Things you can do to help

Ring-fence money to help carers

Do the straightforward practical things well

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

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

NIHR Portfolio dementia research activity across NHS South of England 2009-2012
Number of people in studies (Percentage of dementia prevalence) Total 1900 Average 1.1%

53 (0.5%) 81 (0.7%) 2 (0.0%) 215 (2.4%)

816 (5.8%) 67 (0.4%) 58 (0.3%)

74 (0.6%) 6 (0.1%)

53 (1.1%)

54 (0.7%)

143 (0.6%)

www.dendron.org.uk www.dendron.org.uk

Top 10 recruiting trusts in region: 2009-2012

Oxford Health NHS Foundation Trust Oxford University Hospital NHS Trust NHS Bath and North East Somerset Berkshire Healthcare NHS Foundation Trust Southern Health NHS Foundation Trust Sussex Partnership NHS Foundation Trust Kent & Medway NHS & Social Care Partnership Trust Avon and Wiltshire Mental Health Partnership NHS Trust Devon Partnership NHS Trust NHS Dorset

506 310 174 165 148 114 85 73 71 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 Korenteng Dr Dukes Prof Jones

Dr Loughlin Dr McCleery

Dr Pearson

Dr Simpson
www.dendron.org.uk www.dendron.org.uk

Delivering research to improve care: DOMINO

(Donepezil and memantine for Alzheimers 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 Prof Howard, Kings at the more severe stages
Dr McShane

Prof Katona Prof Jones

Dr Pearson

Prof Holmes
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: helencollins1@nhs.net Mary Griffin Research Network Manager South West DeNDRoN T: 0117 3784239 Email: mary.griffin@awp.nhs.uk

David Higenbottam Research Network Manager South Coast DeNDRoN T: 023 8047 5123 Email: david.higenbottam@southernhealth.nhs.uk

www.dendron.org.uk

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

How Clinical Measurement Drives Improvement in Assessment and Diagnosis of Dementia

Dr Kate Jefferies Psychiatrist and EQ Dementia Lead Dr Terry Lynch - GP and EQ Primary Care Dementia Lead

Diagnosis of Dementia
43% of people with Dementia in the UK have been formally identified

10%

15%

20%

25%

30%

35%

40%

45%

50%

0%

5%

SEC SHA

Brighton & Hove PCT E Sussex Downs & Weald PCT Hastings & Rother PCT E & Coastal Kent PCT

Medway PCT

W Kent PCT

(Source: Mapping the Dementia Gap 2011 Alzheimers Society)

Surrey PCT

SEC Dementia Prevalence 2011

W Sussex PCT

Diagnosis Rates length of time taken to receive a diagnosis

Up to 12 months 1 2 years 3 4 years 5 6 years 22% 37% 23% 5%

Over 6 years Dont know

3% 5%

Source: Dementia 2012: A National Challenge, Alzheimers 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

Triangulating measures
Patient Reported Outcome

Clinical Indicator

Patient Experience

FILM CLIP

Improving Outcomes
Pneumonia Reduction in Re-admissions Reduction in Mortality Reduction in length of Stay Heart Failure Reduction in Re-admissions Reduction in Hospital Admissions (per 1000 admits) Reduction in Mortality Reduction in length of Stay Hip & Knees Reduction in Re-admissions Reduction in Mortality Reduction in length of Stay AMI Reduction in Re-admissions Reduction in Mortality 17.33% 11.62% 16.11% 10.87% 21.10% 5.74 17.07% 10.47 21.07% 5.47 17.20% 10.27 2010 Data 15.69% 2011 Data 15.00% 25.36% 9.75

P<0.05

28.70% 10.24

P<0.05

8.00% 2.30% 9.07

7.28% 2.07% 8.44

Reduction in length of Stay

7.14

7.16

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 wont eat her breakfast.

Drivers for improved care

1.

Size of problem:

670,000 people with dementia in England A quarter of hospital beds CQC inspections Recent hospital scandals National dementia audit

2.

Evidence of inadequate care

3.

4.

National and NHS South priority RUH Quality Accounts & CQUIN

Dementia Strategy Group

RUH Dementia Strategy

Awareness training for all
Develop Pathway Review Paperwork

Kicked off by workshop 2008 Enthusiasts engaged Alzheimers Society and Alzheimers Support involved Some early wins

Improved quality of care in general hospitals

Early assessment carers and family Develop MHLT Protocol for referral

Develop ward based training packages

Identify cognitive assessment tool

Some of our team

Emma Flannery, Rena Cottis Stephany Bardzil Jane Davies Sue Leathers Jacqui Young Sharon Manhi Jon Willis Alice Rigby Theresa Hegarty

Alzheimers Society Alzheimers Support, Wiltshire Matron for Dementia Care Matron for Older People Quality Improvement lead Head of Quality Improvement Ward Manager Senior Sister Head of Patient Experience

What is needed?
1.

Enthusiasm and commitment Clinical executive partnership Trust board engagement

2.

3.

8. Appropriate training and workforce development 2. Agreed assessment, admission and discharge processes with a needs specific care plan

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

1. Respect, dignity and appropriate care

3. Access to a specialist older peoples mental health liaison service

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 wards power 17 categories Assessment by observations of care and audit by expert team

Standard - Respecting and caring

for people with dementia
1.

Method of Measure
Observations of care Feedback to the ward in terms of compliments and complaints

All staff talk to patients and visitors in a professional, caring and courteous manner

2.

Patient care is person-centred as evidenced Direct ward observation by observation of staff interaction with patients
Medical records check

3.

Appropriate risk assessment will be done on all patients who are at risk of leaving ward
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

1.

Method of Measure
Nursing records

All patients have a weight assessment on admission and at discharge (95% standard)
All patients will be assessed using the MUST tool 95% standard

2.

Nursing records

3.

There should be flexibility in provision/ presentation of food e.g. Snacks/ finger

Inspection

foods offered; recognising some patients may take a long time to eat a meal
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

1.

Method of Measure
Ward audit using tools of National audit

Signage must be appropriate for people with dementia

2.

Patients are able to see a clock from their bed Direct ward observation area
Boredom is prevented by regular ward activities
Ward review and discussion with staff and patients

3.

Standard Suitability of staffing

1. >50% of staff to have attended formal dementia training in last 2 years

Method of Measure
Review of training roll

Measure
RCPD 1

Traffic Light Status of Spreading: Dementia Charter Mark: MIDFORD WARD Measure description Status Measurement method Detail / Comments
Respecting and Caring for People with Dementia
There is a system to detect cognitive impairment in relevant patients on the ward 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 All staff talk to patients and visitors in a professional, caring and courteous manner Ward inspection of notes Use of cognition screening Review of literature Good use of forget- me -not flower. Patients with FMN all had MMSE. Also evidence of documented capacity assessments for patents with dementia. Limited literature available for patients and carers. Display about dementia on ward notice board.

RCPD 2

RCPD 3

RCPD 4

Patient care is person-centered as evidenced by observation of staff interaction with patients

Observations of care Feedback to the ward in terms of compliments and complaints Direct ward observation

Staff professional, courteous, polite and appropriate in all interactions

RCPD 5

RCPD 6

RCPD 7

Patients and carers feedback demonstrates high levels of satisfaction Standard = 90% Appropriate risk assessment will be done on all patients who are at risk of wandering Standard = 90% All patients newly prescribed anti-psychotic medication will be referred to Mental Health Liaison Service. Standard =90%

Patient Experience Tracker and / or compliments/ complaints Medical records check

Check drug charts with ward pharmacist

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. 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. All dementia patient records checked and appropriate risk assessments in place with updates where necessary. 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 Patients are able to see a clock from their bed area Boredom is prevented by regular therapeutic sessions or activities Ward audit using tools from National Dementia Audit Ward check Ward review wards may include many activities such as art therapy, music, gentle hand massage etc

WE 2 WE3

New clocks have been ordered for all bays and side rooms. Therapeutic activities include a Wednesday morning coffee club run by the OTs, 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 Silver

Majority green, occasional yellow, no more than one amber, no red

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 -

Were so proud that our striving to do the very best for our patients is being recognised
Terry Bolton, Ward manager

Dementia CQUIN: FAIR (Find, Assess and Investigate, Refer)

All emergency admissions aged over 75
No known dementia Known dementia Dementia pathway

Clinical Diagnosis of delirium

Diagnostic review, if indicated

3
Referral

no

yes
Positive

2 1
Has the person been more forgetful in the last 12 months to the extent that it has significantly affected their daily life?

Diagnostic assessment
yes

Inconclusive

Feedback to GP

Negative

no
Care as usual

1 Find

2 Assess and Investigate

3 Refer

What is needed?
1.

Enthusiasm

2.

Executive clinical partnership Clear timeline for action and focus

3.

Publicity

CARERS SAY

RUH BEST FOR DEMENTIA CARE Carers rate RUH best

Community Based Reablement

Ojalae Jenkins Joint Commissioning Manager Buckinghamshire County Council

Whole System Challenge Buckinghamshire Citizens Jury Community Based Reablement

Whole System Challenge

Crisis Success

Buckinghamshire Citizens Jury

Selection Process Witnesses Scrutiny

Buckinghamshire Citizens 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 Citizens 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... Its all about...

Opportunity Working Together AND

Empowerment

Contact Details: Ojalae Jenkins Tel: 01296 383 183 Email: ojenkins@buckscc.gov.uk

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, Alzheimers 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. Im 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

Contact Details

isherriff@plymouth.ac.uk University of Plymouth

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