Living well with dementia bulletin Issue 5 Summer 2011

Living well with dementia across the South West

South West Dementia Partnership

www.southwestdementiapartnership.org.uk

The South West Dementia Partnership brings

together organisations from health and social care,

the voluntary sector and people using dementia

services to drive forward improvements in the care

of people with a dementia, and their families /

carers.

Our summer issue focuses on the Dementia

Commissioning Pack and the call to action on the

use of antipsychotic drugs for people with

dementia. We include information about the

launch of the Dementia Awareness Resource Pack,

our forthcoming Autumn home care workshops

and the Transparency Project’s consultation on the

new “Our Health“ website at

www.southwest.nhs.uk/ourhealth.

We also offer an in-depth review of the

conference, ‘Dementia Care in Hospital - Rising to

the Challenge’, held in July. Alison Moon, Regional

Champion for Dementia Care in Hospital, says,

“Our annual regional conference was awonderful success again this year. Theprogramme variety was excellent and peoplesaid they had really enjoyed the day. It wasa great pleasure to meet with suchcommitted, compassionate and caringpeople, who together are working totransform the quality of care that peoplewith dementia receive while in hospital.

”Read more about the conference on pages 7-10.

A new resource to support clinical commissioning

groups in designing and purchasing high quality

dementia services was launched 21 July by Care

Services Minister Paul Burstow.

The Dementia Commissioning Pack provides a set

of tools and templates for health and local

authority commissioners, helping them to design

services that are suited to local needs and are cost

effective.

It supports planning across the whole spectrum of

dementia, from early diagnosis to end of life care,

together with guidance on how to reduce the

inappropriate use of antipsychotic medication.

The pack has been developed in consultation with

a range of health and social care experts, including

people with dementia and their carers. It aims to:

➔ Improve quality of services for people with

dementia by placing patient outcomes and

patient choice at the heart of the

commissioning process;

➔ Drive efficiency by reducing unwarranted

variation in services;

➔ Reduce bureaucracy for commissioners by

providing tailored documents and templates,

bringing together the different aspects of

commissioning (clinical, financial, commercial,

contractual and procurement).

Dementia Commissioning Pack

www.southwestdementiapartnership.org.uk 2

Living well with dementia bulletin Issue 5 Summer 2011

Paul Burstow said:

“With early diagnosis and good care,people with dementia can continue to livewell for many years. But for this to happen,it is vital that services are designed anddelivered to meet the needs of individualsand their local communities.

This is why we want to devolve power toclinicians and patients but we also recognisethat local commissioners need to besupported with expert tools and advice.

The Dementia Commissioning Pack will savevaluable time. It will help clinicalcommissioning groups avoid reinventing thewheel each time they provide a new service,will give patients the best outcomes and usemoney effectively.

”The Pack provides detailed specifications and

other material for local commissioners to use,

thereby reducing bureaucracy and enabling

commissioners to spend more time focusing on

matters that will make the most difference to

patients, rather than process or bureaucracy.

National Clinical Director for Dementia, Professor

Alistair Burns said:

“This is a key resource which will enhancethe commissioning of dementia services,and ultimately lead to improved outcomesfor people living with dementia and theircarers and families.

Most importantly, it has been co-producedwith clinicians and reflects theperspectives and expertise of a wide groupof stakeholders, including people withdementia.

”

Sir Ian Carruthers, OBE, Chief Executive NHS South

West, and dementia champion for the NHS said:

“Dementia is one of the greatestchallenges society faces today, and it isessential that we get commissioning rightso that people can live well in theircommunity, and access more support whenthey need it.

“Strategic Health Authorities acrossEngland have signed up to this work,ensuring that this important resource ismade available to clinical commissioninggroups so that we achieve realimprovements in quality and productivity.

”Alongside the Dementia Commissioning Pack, the

Alzheimer’s Society has produced a series of

patient information leaflets to make patients

aware of what they should expect from good

dementia services.

Andrew Chidgey, Head of Policy and Public Affairs,

Alzheimer’s Society said:

“Dementia is one of the greatestchallenges society faces today, and it isessential that we get commissioning rightso that people can live well in theircommunity, and access more support whenthey need it.

Strategic Health Authorities acrossEngland have signed up to this work,ensuring that this important resource ismade available to clinical commissioninggroups so that we achieve realimprovements in quality and productivity.

”

www.southwestdementiapartnership.org.uk 3

Living well with dementia bulletin Issue 5 Summer 2011

Guidance

Handbook: using the Dementia

Commissioning Pack

Commissioning framework for dementia

Briefing paper - Dementia Commissioning

Pack

Technical Annex - agreeing and monitoring

services using the service specifications

Additional resources via the Dementia

information portal

http://dementia.dh.gov.uk/dementia-

commissioning-pack/

Early diagnosis and interventions

Case for change - memory service for people

with dementia

At home, and in care homes

Case for change - community-based services

for people living with dementia

Hospital

Case for change - mental health liaison

service for dementia care in hospitals

Reducing inappropriate prescribing of

antipsychotics

Reducing the inappropriate use of

antipsychotic medication for people with

dementia

The Right Prescription: a call to action on the

use of antipsychotic drugs for people with

dementia (Dementia Action Alliance and NHS

Institute for Innovation and Improvement,

2011)

The Right Prescription: a call to action on the

use of antipsychotic drugs for people with

dementia. Commitment for commissioners in

heath, social care and GP commissioning

(Dementia Action Alliance and NHS Institute

for Innovation and Improvement, 2011)

Optimising treatment and care for

behavioural and psychological symptoms of

dementia. A best practice guide for health

and social care professionals (Alzheimer's

Society, 2011)

Templates

Early diagnosis and interventions

Service specification for dementia: memory

service for early diagnosis and intervention

At home, and in care homes

Service specification for dementia: better care

at home, and in care homes

Template action plan to improve care for

people with dementia in the community

Better care at home and in care homes -

contract inserts

www.southwestdementiapartnership.org.uk 4

Living well with dementia bulletin Issue 5 Summer 2011

Hospital

Service specification for dementia: mental

health liaison service for general and

community hospitals

Request for proposal: action plan to improve

care for people with dementia in hospital

Reducing inappropriate prescribing of

antipsychotics

Reducing the inappropriate use of

antipsychotic medication for people with

dementia

Tools

If you would like to receive a copy of the following

tools, please email

dementiacommissioningpack@dh.gsi.gov.uk

Assessment tool

Memory service cost / benefit tool

Primary care cost / benefit tool

Hospital cost / benefit tool

Patient information

Early diagnosis and interventions

Worried about your memory? (Alzheimer's

Society, 2011)

What your diagnosis means for you

(Alzheimer's Society, 2010)

Memory service - easy read

At home, and in care homes

Keeping safe in your home (Alzheimer's

Society, 2010)

Living alone (Alzheimer's Society, 2010)

Dementia service for people living at home or

in a care home - easy read

Hospital

Dementia service in hospital - easy read

Reducing inappropriate prescribing of

antipsychotics

Reducing the use of antipsychotic drugs. A

guide to the treatment and care of

behavioural and psychological symptoms of

dementia (Alzheimer's Society, 2011)

The NHS Institute for Innovation and Improvement

and the Dementia Action Alliance have launched a

call to action for people to work together to

improve the quality of life of people with

dementia and their carers by reducing the

inappropriate prescribing of antipsychotics.

A specific commitment has been developed for

eights groups to enable everyone to play their part

to achieve the overall goal.

The Right Prescription: a call to action

on the use of antipsychotic drugs for

people with dementia

The groups include:

➔ People with dementia and their carers&

voluntary sector and advocacy groups (local

and national)

➔ Leaders of care homes

➔ General Practitioners and primary care teams

➔ Psychiatrists and mental health teams

➔ Pharmacists

➔ Hospital doctors and multidisciplinary teams

➔ Commissioners of health and social care

services

➔ Medical and nursing directors of acute and

foundation trusts

Download

The Right Prescription: a call to action on the

use of antipsychotic drugs for people with

dementia

Commitment for commissioners in heath,

social care and GP commissioning

According to Alzheimer's Society symposium at

the International Conference on Alzheimer's

Disease, studies into depression and agitation and

aggression will play a key role in helping to reduce

inappropriate prescriptions of antipsychotics for

people with dementia. These symptoms can cause

significant distress for people with dementia and

carers and are often the reason for antipsychotics

being prescribed.

Findings from the studies include:

➔ two common antidepressants are not

clinically effective for treating significant

depression in Alzheimer’s

➔ agitation levels of people with moderate or

severe dementia in care homes who were

treated with pain medication were reduced

by 17 per cent over eight weeks

➔ the Alzheimer’s drug Ebixa was not beneficial

for treating clinically significant agitation in

people with later stage Alzheimer’s although

there was a potential benefit for aggression

and it did improve cognition

Read more on the Alzheimer's Society

website

We have developed an online library of useful

resources to support improved resources via the

Partnership website.

The resources are organised into key topic areas:

➔ Assuring quality and safety

➔ Decision support tools

➔ Needs assessment and datasets

➔ Prescribing guidelines

➔ Undertaking high quality audits

www.southwestdementiapartnership.org.uk 5

Living well with dementia bulletin Issue 5 Summer 2011

Improving prescribing resource library

Research helping to reduce

inappropriate prescribing of

antipsychotics

www.southwestdementiapartnership.org.uk 6

Living well with dementia bulletin Issue 5 Summer 2011

In line with the publication of the Dementia

Commissioning Pack we have developed the

commissioning section of the Partnership website

at

www.southwestdementiapartnership.org.uk/com

missioning/.

The commissioning section of the website

provides information about:

➔ Dementia Commissioning Pack - this page

introduces the Pack and provides quick access

to all of the documents.

➔ Commissioning framework for dementia -

this page summarises the framework which

underpins the Dementia Commissioning Pack.

➔ South West Commissioners Network - this

page provides information about the

Network, including access to agendas, notes

and presentations from meetings

➔ Commissioning resources library - this library

includes resources to support commissioners

to promote living well with dementia. The

resources are organised into the four key

themes of the Dementia Commissioning Pack.

The new web pages were launched at the South

West Commissioners Network meeting on 27th

July in Taunton. Feedback from Network members

was very positive. We will continue to enhance

this section of the website so that it benefits

Network members and others interested in the

commissioning agenda.

Commissioning section on the

Partnership website

www.southwestdementiapartnership.org.uk 7

Living well with dementia bulletin Issue 5 Summer 2011

Professor Alistair Burns, National Clinical Director

for Dementia, was joined by one of the nation’s

favourite poets as well as doctors, nurses,

voluntary group members and people living with

dementia at the Hospital care conference 2011.

The conference, held in Taunton on Tuesday 5 July,

opened with poetry by Matt Harvey, well known

humorist and poet who has a special interest in

mental health.

The conference provided delegates with

opportunities to:

➔ look at the interim findings from the National

Audit of Dementia, exploring lessons for

improvement in the South West

➔ find out more about the implementation of

the South West Standards for dementia care

in hospital, and next steps for the peer review

2011/12

➔ share and spread learning and positive

practice

➔ focus on action planning and improvement

The conference showcased areas of excellence

including:

➔ A Dementia Charter at Royal United Hospitals,

Bath

➔ Partnership working between care homes and

hospitals in Cornwall to ensure better end of

life care

➔ Dementia education for staff in Torbay

Hospital

➔ Personalised information for dementia

patients at University Hospitals NHS

Foundation Trust, Bristol, and a specialist

ward for patients with dementia at

Southmead Hospital, Bristol;

➔ Working with compassion and care, drawing

on the experiences of people living with

dementia

Discussing the workshops over a cup of tea

Discussing the morning plenary during a coffee break

Dementia Care in Hospital - Rising to the

Challenge

www.southwestdementiapartnership.org.uk 8

Living well with dementia bulletin Issue 5 Summer 2011

Alison Moon, Chief Nurse at University Hospitals

NHS Foundation Trust, is NHS South West

Champion for Dementia Care and leads a regional

Expert Reference Group which brings together

clinical leads in dementia from hospitals across the

South West.

Alison said:

“In the South West we are working hardin partnership with the Alzheimer’s Societyto improve hospital care for patients withdementia. A national audit of dementia carein hospitals has been conducted and the fullreport will be published later this year.

Here in the South West we are listening tothe experiences and concerns of peoplewith dementia, their families, carers andstaff and developed eight commonstandards for hospital care. This meansthat patients should expect the samestandard of care in any general hospitalacross the South West. Over the next twoyears we will systematically implementthese standards, alongside the findings ofthe national audit to transform hospitalcare for people with a dementia.

Hospital staff, patients, volunteers,relatives, carers and commissioners all haveroles to play in achieving these standardsand we are working closely with them toensure that people with dementia receiveconsistently high quality care andsupport.

”Professor Alistair Burns, National Clinical Director

For Dementia at the Department of Health

addressed the conference on “What Does

Excellence Look Like?”.

Professor Burns said:

“Dementia Awareness Week is a greatopportunity to focus on what matters mostfor people living with dementia, not justpatients and carers but the wider healthand social care community.

I know there has been significantprogress in the South West and I am verymuch looking forward to sharing the latestideas at this regional conference, which Iknow will celebrate success but also callseveryone to rise to the challenge ofimproving dementia care.

”

Browsing the display stands and posters

www.southwestdementiapartnership.org.uk 9

Living well with dementia bulletin Issue 5 Summer 2011

Other expert speakers are listed below along with

their presentations for download

Findings from the National Audit of Dementia

Interim Report Chloe Hood, Programme

Manager, National Audit of Dementia, Royal

College of Psychiatrists

Creating Change in the South West Alison

Moon, NHS South West Champion, Dementia

Care in Hospitals; Chief Nurse, University

Hospitals Bristol NHS Foundation Trust; Kate

Schneider, Programme Lead, Mental Health

and Wellbeing; Dementia, Autism, South

West Strategic Health Authority

The Development and Use of the Person,

Interaction and Environment (PIE)

Observational Tool Jill Hoyle, Matron in

Elderly Care, Bradford Teaching Hospitals NHS

Foundation Trust

The Development and Use of the Person,

Interaction and Environment (PIE)

Observational Tool Jane Buswell, Nurse

Consultant, Older People and Clinical Lead

Dementia Care, University Hospitals Bristol

NHS Foundation Trust

Royal United Hospital Bath NHS Trust

Dementia Charter Dr Chris Dyer, Consultant

Geriatrician and Clinical Lead, Older People’s

Unit, Royal United Hospital Bath NHS Trust

The workshop facilitators are listed below along

with their presentations for download:

The Development and Use of the Person,

Interaction and Environment (PIE)

Observational Tool Jill Hoyle, Matron in

Elderly Care, Bradford Teaching Hospitals NHS

Foundation Trust

The Development & Use of the Person,

Interaction and Environment (PIE)

Observational Tool Jane Buswell, Nurse

Consultant, Older People and Clinical Lead

Dementia Care Bradford Teaching Hospitals

NHS Foundation Trust University Hospitals

Bristol NHS Foundation Trust

Implementing ‘This is Me’ Carly Hall, Infection

Prevention and Control Nurse, University

Hospitals Bristol NHS Foundation Trust

Partnership working between the acute

environment and care homes to enable

people to die in their place of choice Beverley

Chapman, Clinical Lead Nurse of Dementia,

Cornwall Partnership NHS Foundation Trust

Dementia Education in Torbay Hospital Maggi

Dunbar-Douglas, Dementia Specialist Nurse

South Devon Healthcare NHS Foundation

Trust

Experience with a specialised ward for people

with dementia in the acute hospital Dr Judy

Haworth, Speciality Doctor for Dementia Care

and David Fearon, Ward Manager, North

Bristol NHS Trust

Making commitments in the Creative Compassion workshop

www.southwestdementiapartnership.org.uk 10

Living well with dementia bulletin Issue 5 Summer 2011

Volunteering at Mealtimes Debra Parsons,

Matron Lead for Learning Disabilities, Susie

Milton, Outreach Liaison Nurse and Sue

Tarpey, Voluntary Services Manager, Weston

General Hospital, Weston Area Health NHS

Trust

Royal United Hospital Bath NHS Trust

Dementia Charter Dr Chris Dyer, Consultant

Geriatrician and Clinical Lead, Older People’s

Unit, Royal United Hospital Bath NHS Trust

A Dementia Awareness Raising Training

Model Fiona Higginson, Matron and Mandy

Carney, Yeovil District Hospital NHS

Foundation Trust

Addressing psychosocial issues as a way of

reducing length of stay Dr Nigel North, Head

of Clinical Psychology,Salisbury District

Hospital NHS Foundation Trust

Access documents from the Creative

Compassion – Your Stories workshop run by

Caroline David.

The Expert Reference Group brings together

experts with personal experience of dementia,

carers, and representatives from the Alzheimers

Society, clinicians and managers from acute

hospitals and mental health trusts, and a number

of locality commissioners. Alison Moon, NHS SW

and South West Dementia Partnership champion

for dementia care in hospital chairs the Group.

The Expert Reference Group:

➔ Identifies priorities for action to improve the

experience of people, carers and families

➔ Showcases examples of positive practice and

innovation and provides opportunities to

share, discuss and suggest solutions to

barriers to improving services

➔ Provides an opportunity to hear about and

contribute perspectives and expertise to

system wide Partnership initiatives such as

workforce improvement, involvement and

volunteering

➔ Enables lively discussion and networking with

others; an on line discussion group is available

to enable ongoing sharing and debate

The Expert Reference Group meets quarterly,

future meetings;

➔ 10 October 2011

➔ 9 January 2012

➔ 12 March 2012

New members will be welcomed. The group would

benefit from input from hospital based therapists

and social workers. For an invitation to the next

meeting contact jane.rawlinson@swdc.org.uk.

Further details about the ERG work, members and

meetings are available via the Partnership website

at www.southwestdementiapartnership.org.uk/

hospitals-erg

South West Expert Reference Group for

Dementia Care in Hospital

Transforming the experience of care in

hospitals

The Expert Reference Group contributes to the

design and development of important pieces

of work aimed at transforming the experience

of care in hospitals:

✓ The South West Hospital Standards in

Dementia Care

✓ Peer Review of the Standards

✓ Route Map to improve Assessment and

Care

✓ Resource Pack of Awareness Resources

✓ Volunteering in hospital.

www.southwestdementiapartnership.org.uk 11

Living well with dementia bulletin Issue 5 Summer 2011

The Dementia Awareness Resource Pack was

launched at the Hospital Care conference. The

Pack contains a selection of quality assured

awareness raising resources designed to promote

living well with dementia. The resources include

leaflets, factsheets, contact lists and a DVD.

The Pack is intended for hospital care staff for use

with people coming into hospital who may have

dementia or experience symptoms associated with

dementia. The pack contains specific examples

and also signposts people to the organisations

themselves. Although the pack is designed for use

in a hospital setting there is clearly scope for it to

be further developed for use in other settings.

The Pack has been produced to support the

implementation of the South West Hospital

Standards in Dementia Care, intended to

transform hospital care for people with a

dementia.

www.southwestdementiapartnership.org.uk/hospi

tal-standards/

The implementation of the South West Hospital

Standards intends to make a significant

contribution to improving care and services in

general and community hospitals. The provision

of a Resource Pack will provide accessible

information in the format that is suitable,

appropriate and can be tailored for people living

with dementia.

A recent survey illustrated the need for a core

information pack, which could be provided to

people in all South West hospital settings. We

found that many hospitals were promoting the use

of nationally recognised resources, such as the

‘This is me leaflet’ (Alzheimer’s Society, 2010).

However some hospitals do not signpost people

consistently to the most valued resources and

remain unaware of the wealth of awareness

resources which exist. We also identified excellent

Dementia Awareness Resource PackResponding to lived experience

Important messages from the research into the

lived experience of people living with

dementia, their carers, families and friends,

includes:

✓ every person’s journey with dementia is

unique

✓ people would like information tailored to

their requirements at that time

✓ people want to be signposted and

supported to information and resources

✓ sometimes people need support to

understand and access what is on offer,

and

✓ a key point of contact can make a real

difference

www.southwestdementiapartnership.org.uk 12

Living well with dementia bulletin Issue 5 Summer 2011

examples of local handbooks and signposting

guides. A few of these are well known and have

been adapted for use in other localities. However

there remain a number of hidden gems, which

many could benefit from knowing more about.

We are working with South West hospitals to

encourage staff to adopt and adapt the dementia

awareness resource pack making it relevant for

local use.

For more information about the pack contact

anne.rollings@swdc.org.uk

FREE Half-day workshops for Home Care

Providers and Commissioners.

Bristol 5 October Bournemouth 6 October

Exeter 7 October 2011

9:30am to 1pm with lunch

The South West Dementia Partnership is running a

series of half-day workshops to assist providers

and commissioners with the exciting but

challenging task of developing services to support

people with dementia at home.

Are you:

➔ Wanting to develop services and grow the

business for clients with dementia, but aren’t

sure where to start?

➔ Wanting to make sure your commissioning

activity tackles some of the obstacles in

getting better outcomes for people with

dementia at home?

➔ Interested in learning how your staff can

improve the quality of care they give to

clients that have or may have dementia with

free, easy to use resources?

➔ Keen to meet with other providers and

commissioners of home care services to

network and learn about improving dementia

care in the South West?

Then come along to one of these FREE half day

workshops to learn more about

➔ Recent research in the South West into the

needs of home care providers and people

with dementia

➔ Practical examples of organisations and places

that are making personalised dementia care

at home a reality

Please download the booking form, complete it

and return to jane.rawlinson@swdc.org.uk fax:

01278 432003.

For more information please contact

rebecca.hardwick@swdc.org.uk tel: 07768 612

736

Living well with dementia - developing

the home care response

www.southwestdementiapartnership.org.uk 13

Living well with dementia bulletin Issue 5 Summer 2011

The Transparency Project has produced a

prototype website called “Our Health”

www.southwest.nhs.uk/ourhealth which provides

information on how services in the South West are

performing. The website aims to help patients and

carers work with health and care staff to improve

their experiences and the experiences of others.

The website provides transparent information that

will empower people to improve both the services

and the care provided, as well as help patients and

their families to make informed decisions about

their care.

Increasing transparency is a central theme of

Government policy. One of the key features of the

NHS reforms is the “information revolution” to

ensure that patients have greater control and

choice – “no decision about me, without me”. The

announcement by the Prime Minister on 7 July

2011 commits the NHS to publishing clinical

outcome data in primary care as well as the results

of nationally funded clinical audits. Our Health

seeks to contribute to the national and local

discussions about what this means in practice.

The information on the Our Health website is

structured along the care pathway or patient

journey, providing performance data on the

services available at each stage. The website

currently provides information about dementia

Our Health website consultation

Living well with dementia bulletin Issue 5 Summer 2011

care and stroke care.

The project is seeking feedback about the Our

Health website from a wide range of stakeholders.

The website includes a survey and people are

encouraged to feedback what they like and dislike,

where they feel information is unhelpful or even

inaccurate, and what additional features could be

considered. The feedback will inform the next

iteration of the website. The deadline for

feedback is 21 August 2011.

An audio “talk through” of the key features of the

site will be available on the prototype from

Tuesday 26 July. This illustrates how a couple of

sample patients and carers might use the facility

and highlights some of the unique aspects of this

site.

We will provide more information about the

development of the Our Health website in future

bulletins.

A partnership to promote living well with dementia

More information

The South West Dementia Partnership

website www.southwestdementia

partnership. org.uk provides further information

about implementing the strategy along with

examples of innovative practice.

The National Dementia Strategy website

http://dementia.dh.gov.uk provides access to the

latest national policies and research findings.

The Dementia Gateway

www.scie.org.uk/publications/dementia/

produced by the Social Care Institute for

Excellence(SCIE) offers high quality information,

video and training programmes.

The Alzheimer’s Society website

www.alzheimers.org.uk offers a wide range of

fact sheets, studies, discussion forums, advice

and sources of support.

Regional lead

➔ Kate Schneider, Programme Lead, Mental

Health and Wellbeing; Dementia, South

West Strategic Health Authority,

kate.schneider@southwest.nhs.uk,

01823361227, 07973732766.

Bulletin and website

If you have information that you would like to

appear in a future bulletin or on the Partnership

website then please send it in to

info@southwestdementiapartnership.org.uk or

call Rowan Purdy to discuss it on 07852175374.