NHS South of England Dementia Challenge Conference Tuesday 29 May - - PowerPoint PPT Presentation

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

• f 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

• wn homes, residential care & specialist hospitals)
• DeNDRoN gave advice on the feasibility and deliverability
• f 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 David Higenbottam Research Network Manager South Coast DeNDRoN T: 023 8047 5123 Email: david.higenbottam@southernhealth.nhs.uk Mary Griffin Research Network Manager South West DeNDRoN T: 0117 3784239 Email: mary.griffin@awp.nhs.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

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% SEC SHA Brighton & Hove PCT E Sussex Downs & Weald PCT Hastings & Rother PCT E & Coastal Kent PCT Medway PCT W Kent PCT Surrey PCT W Sussex PCT

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

• bservation 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

Contact Details: Ojalae Jenkins Tel: 01296 383 183 Email:

• jenkins@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, 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

• ver 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

T

• 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

• f England