Improving care for people with dementia while in hospital · Web viewThe one word that summarises how you feel about today is 20. ... Dementia Declaration – offering “more carrot

Report on scoping event

January 2010

The primary and community care response to dementia - leading for Improvement

South West Dementia Partnership

www.southwestdementiapartnership.org.uk


Contents

Context setting..............................................................................................................3

What is it like to have dementia/Alzheimer’s?.............................................................5

What would make a difference if you were involved?..................................................5

General comments about improving GP services.........................................................6

How would we know we had got this right?.................................................................6

What do we know works?...........................................................................................10

The “Offer”..................................................................................................................14

Have we got the aims right? What else would this programme need to achieve for

you locally?.................................................................................................................14

Participants.................................................................................................................15

Delivery of the programme.........................................................................................16

Our first scoping of contents.......................................................................................16

Evaluation................................................................................................................... 17

General commentary..................................................................................................17

Evaluation................................................................................................................... 19

What was great about this event?..........................................................................19

Unfulfilled potential................................................................................................19

The one word that summarises how you feel about today is.................................20

Accepting that change is constant, what do you now see as likely to be most useful

to you in future events............................................................................................20

…. And a bit of personal reflection..........................................................................21

We: What we locally need to do differently as a result of this event?....................21

Attendees at event......................................................................................................23

Report on scoping event 2


Context setting

This report describes the process and outcome of an event aimed at exploring the

aims and process for improving the leadership capacity to improve the primary and

community care response to dementia. In the process it also offered to provide “ a

clearer collective sense of direction, where we are now and the strengths and most

trusted parts of the past that will take us into the future” (as described on the flyer).

The material advertising the event also highlighted that the programme itself aimed

to:

Clarify the outcomes you are seeking locally

Explore what works within your local context

Reflect on a leading edge thinking, policy imperatives and positive practice

Connect and share with peers working on similar challenges

Design and deliver ways forward for sustainable improvement in dementia

services

Evaluate improvement to capture the learning and apply the best of what

works

Geoff Baines, Associate Director at NHS-SW provided a helpful review of progress in

the SW and underlined the key imperatives for delivery.

1. Good quality early diagnosis and intervention for all

2. Improved quality of care in general hospitals

3. Living well with dementia in care homes

4. Reduced use of antipsychotic medication

Steve Onyett then provided perspective on the leadership that is required in troubled

times. This echoed Geoff’s opening remarks on the importance of passion and

working from core values1.

1 Geoff’s and Steve’s full presentations are available at www.southwestdementiapartnership.org.uk


http://www.southwestdementiapartnership.org.uk/


The day was also helpfully informed by a commentary from the Torbay Dementia

Leadership Group, which was shared on the day. Members made, and agreed with,

the following observations (presented verbatim) 2

They would ask GP’s how they would improve things, “What changes would

they make?”.

Are GP’s aware of the time it takes people with dementia to ‘take things in’.

Members felt that at least an extra 10 minutes should be allocated for

appointments when dementia is involved.

Are GP’s aware of the impact a diagnosis has on the person in front of them?

Members said things like “The GP did not seem to even think about the

impact on me”. “Once diagnosed they think they have done their job”. “When

you receive such devastating news you need support”. “They don’t seem to

know what a life changing shock this is”.

Are GP’s comfortable with, or do they see the importance of communicating

with someone who has been diagnosed? All members said GP’s did not talk

to them about their situation

- One member was referred to Memory Clinic and diagnosed there. Their

GP never mentioned dementia again, even when the person returned

with unrelated ailments.

- Another said his GP did not discuss it at all. He prescribed medication but

made no arrangement for follow up to see how it was working. There was

no open discussion or feedback. All present agreed that they had not

experienced follow up from their GP.

- Another member said she had not been treated with courtesy.

- Another said “No one can understand what I am going through”, but at

least they might treat me as a person and communicate with me”.

2 Obtained with the assistance of Anne Rollings Involvement Project Manager, Alzheimer's Society and

Norman McNamara, Chairperson of the group. We are extremely grateful for this support.



Are GP’s aware of what information / lack of information is in their surgeries?.

Members said that they found a lot of information” in surgeries, but nothing

about dementia.

Are GP’s aware of how useful it is for someone with dementia to see the same

doctor every visit? All members felt this was very important.

Are GP’s aware of the need to fully involve CPN’s and social care? One

member, who lives alone and has no carer, was given a “pile” of information

about Care Homes by the GP. He did not seem to realise she had trouble

understanding it, and no transport to go and examine the options. Members

all felt there needed to be more communication between GP’s and social

care.

A general commentary based on feedback from groups and individuals living with

dementia and their carers was also captured in advance of the day.

What is it like to have dementia/Alzheimer’s?

Most people seem to believe that a person with AD has completely changed,

and must be treated different or avoided. (Carer)

“I have a different sort of feeling in my mind, nothing to do with words, which

get lost”, “Like living in Alice and Wonderland in and out of reality”,

“Then treat them with an element of respect and time to make our own

decisions.”

“I suppose I have got used to living with AD that I take it for granted that

everyone knows how it is? (Carer)”

What would make a difference if you were involved?

“It is a great feeling of accomplishment when you can use your skills to the

benefit of all.”



“There is a wealth of experience wasted in people doing something wrong

when they are only doing what they want to do. Give these old codgers a

chance to contribute to society.”

(16 November 2010)

“Make people less self conscious”, “Right to be heard”, “Help people – be

useful”, (24 November 2010)

General comments about improving GP services

Not always first point of contact for information

Time is a big element

Opportunities to discuss situation with someone else in surgery would be

welcomed

People need to understand what it is like. How can they know if they have

never experienced it?

They are busy people – feel you don’t want to bother them

If the GP advises then this helps

How would we know we had got this right?

Participants on the day were invited to take part in a “Timequake” where they were

invited to imagine being projected forwards to December 2012. In that future, “The

work we have done on developing leadership to improve our primary and community

response to dementia has gone better that we could have imagined in our wildest

imaginings! We are just GREAT!”. Imagining operating from that ideal future

participants were asked to consider: “What is happening now that you are really

pleased about?” and “Looking back over the past two years (to 2010) what stands out

for you as the things that went really well?”



What emerged was a very concrete vision based around the needs of people

diagnosed with dementia. It was a future where that person would be living well

with dementia and saying:

“I know what to expect”

“I know my carer/family are supported”

“I have access to treatment”

“I received diagnosis in a timely and sensitive way”

“I’m part of a supportive community”

“I am respected and involved in decisions that involve me”

“I enjoy my life and family”

“I have a voice and am listened to”

“I am supported to live my life to the full”

“I’m accepted”

“I understand information and support is available and I know how to access it”

In December 2012

People with dementia are at the

centre of everything. They define

the outcomes to be pursed. Action

plans are talked about openly and

plans are made about the future,

including end of life, with people

with dementia and carers. The

focus in on people first

People have choice, and control

over their lives. Users and carers

are engaged and involved in

planning and commissioning- there

is personalized individual support.



There is the right support for carers founded on understanding and awareness.

Families are not compromised and carers report satisfaction and fewer

complaints

There are credible

clinical and practice

leaders at all levels

backed by a clear

direction of travel and

good communication.

We all know people to

turn to regarding

meeting needs and

where to go for that

clarity and support

We are all involved in co-creating (partnerships, valuing working with service

users/carers)

There is effective community based

support to help maintain independence

with full and effective use of the voluntary

sector

There are fully functioning “living and

breathing” partnerships at all levels

We focus on and learn from what went

well

We have the removal of barriers created

by organisation structures

We have values/principle led services



The value of the vision is cascaded

Primary care teams believe that there is something in it for them

We have gained momentum

We are outcome focussed rather than process focussed

We are involved in continuous learning (e.g. through quality assurance processes

There is teaching and learning by example, - including time for reflection

There are real champions making a

difference

The different strands of strategy are

met, e.g. Early intervention and

diagnosis

The Dementia Declaration is

supporting the skilling up the

population, and empowerment,

including community leaders.

The vision is embedded within the

culture of the population. Community

awareness is in place (neighbours

know and care). People are able to

bring themselves into the real world

Younger people with dementia are supported with appropriate information and

services

There is a more certain financial future. We have the vision to see where funding

opportunities could be used to benefit other issues.

Development supported by effective research



The following graphic represented other ideas that emerged regarding the

importance of change at different levels.

What do we know works?

Participants were then invited to engage in a process of “scaling” where taking the

vision described above as ten they were asked where they felt we were now on a

zero to ten scale. They were then asked to explore, “Why are we at [x] and not at

zero? How have we got to where we have got?” With respect o leadership

particularly they were asked? “As you look back what stands out for you as examples

of excellent leadership? What worked well? What made it good?”, and also “As you

look back what stands out for you as examples of where you were really effective as a

leader or someone making a positive contribution to change? What worked well for

you?”

The following was highlighted. They included specific initiatives and broader enabling

factors.


Pressure for improved

services/public

awareness/ reduced

stigma

Public Health & Social

Care. GP

Commissioning/awar

eness. Integration

Person with dementia

& carer – self

expression/lack of

persecution


As a leader I identified partnership “stuttering” and was able to bring

additional social care resource to the timetable to assist, and also saying “and

dementia” a lot in commissioning discussions. The theme of having dementia

on every agenda recurred.

Ownership of dementia by all

o care workforce first

o PHCT

o Acute care

Positioning of Dementia

o End of life condition

o LTC

o Ownership of dementia by all clinicians – all empowered

o Links to all agendas e.g. commissioning

Knowledge of the benefits of greater service integration (and not just for

dementia)

Partnership working

o high level sign up/permissions/less restrictions

o key champions working together

Mental health

Acute

Primary Care

o All partners at table. Getting the right people around the table,

including carers, was a recurring theme.



Health

Volunteers

Alzheimer’s Society

Academic

Service user link

Carers

Good clinical engagement was a recurring theme including secondary care,

acute and mental health

Combined training – acute/PCT/Provider/LA Group

Tenacity and focus.

The commitment of individuals

Carers – passionate carers taking forward pieces of work was seen as

powerful

Change of NICE Guidelines3

National Strategy impetus providing a “kick

up the bum”

Dementia Declaration – offering “more

carrot than kick!”

Identification of current problems

Existing service does something – and this

needs to be highlighted

Already (some) listening/involvement of

users to build on

3 http://www.nice.org.uk/CG42


http://www.nice.org.uk/CG42


Financial backing (so far)

Strategies that are common across agencies

Carers – recognised/partners/informing

Facilitation support and guidance (e.g. from SWDC)

Sir Ian Carruthers’s personal interest and commitment to the issue

Workforce Training Strategy – Leadership in training

Awareness raising/ten top tips/blue bus around Somerset/acute trusts

training (“an hour to remember”)/partnership working.

Creation in Somerset of “Country-wide dementia awareness worker” & “GP

dementia liaison worker” positions.

The UK Dementia Congress, Bournemouth

The role of Alzheimer’s Society in promoting dementia services, (including

Neil Hunt’s role and influence when he was Chief Exec).

Hawker Publications

Service user involvement project manager – south west. Alzheimer’s Society

post, 2 yr, SHA funded.

Carer-led memory/café network development

“This is Me” project and training in Taunton and Bridgwater

Person led – person held records – capturing memories, the essence of the

person



The “Offer”

Jo Gajtkowska then presented the “offer” that has been developed by through

discussion with the SHA and based on previous experience of successful programmes

(e.g. regarding leadership for Improving Access to Psychological Therapies (IAPT) and

Child and Adolescent mental health services)4.

The following subheadings reflect the questions that were put to participants

followed by their commentary.

Have we got the aims right? What else would this programme need to

achieve for you locally?

How can we make this real? How can we set it up to meet the needs and

expectations of services users in our communities?

Local groups are unique and so it may be difficult to meet individual

leadership needs.

How does this fit in with the Dementia Declaration?

How can we involve local stakeholders?

We must be challenged throughout the programme

We need to ensure that learning is transferrable to the other aims of the

organisations (i.e. PCT).

What are we developing people to do/become? A gap analysis was needed

but there was also a sense that perhaps this also needed to occur locally.

We want you to push awareness to beyond our comfort zone, using real

voices and real engagement

4 The supporting document and presentation can be found at . www.southwestdementiapartnership.org.uk


http://www.southwestdementiapartnership.org.uk/


Participants

Are these the people we need to involve to achieve the aims as you see them?

Are there others who should be involved and/or involved outside of the delivery of

the programme?

How can we include local influencers in the delivery – key to local community

approach? Allow localities to identify key players and other interested

parties. We do not want to exclude other interested parties e.g. Health

Watch. Also we don’t want just statutory organisations e.g. include local

businesses, professionals.

Local involvement of the right people is a key issue. Who are they and what

are the risks and pros and cons of bringing lots of people to the table. We

need to think about how we get the right people with right objectives and

right commitment.

Passion and drive matter more than status/role/organisations.

Clinical leaders – hospitals or champions?

Is there overlap with IAPT programme (may be the same target group?).

Need right mix of commissioners/providers/PWD.

Will only work locally (team) with external facilitation. This would be a more

efficient way.

One member felt that this group today is high level and what is needed is

ground level leadership.



Delivery of the programme

Does this appeal?

What else has worked for you in the past?

Is a core programme that people have to come to the best use of time? There

are the practicalities to consider regarding organisations that have

increasingly restricted resources and have to ration which meetings are

attended. Having four full days might compromise consistency of attendance

and not offer the best way of involving users.

More local team based facilitation and support is needed to deliver outcome

based work according to a local need. Building strengths at a local level –

work with us as a partner to help build capacity – this would create more

sustainability.

Some way of sharing experience between meetings could be developed.

Involve people with dementia/carers in monitoring/evaluation.

Develop community leaders who will involve local people in decisions and

developing ideas.

Put dementia on other agendas where appropriate.

We value time to reflect – and then turning this into action

Consistency might be compromised if membership changes at each day.

The SoFAR groups described need to benefit the whole group/team rather

than just individual agendas.

Our first scoping of contents

About right, too much, too little, key themes we have missed?



We need speakers with something to offer and to provide challenge.

Find creative ways to involve carers and people with dementia. All day

meetings are not appropriate for that.

Job uncertainty in some organisations makes it difficult to allocate the right

person. Organisations’ ability to fund attendance could influence

commitment and the achievement of aims.

Evaluation

How are we (and we mean “we”!) going to demonstrate that this has made a

difference?

How accountable are we to people who have the voice of experience – carers

and people with dementia.

If we do have people attending South West –wide events we need stronger

accountability to people back at base. Suggestion was that we say that you

cannot attend unless you have a group of people behind you that you are

reporting to.

Develop a group of service users in our localities to report back and evaluate

on the outcomes delivered by the programme.

General commentary

The day was successful in drawing from participants and rich commentary on what

was needed and sought. Further insights are available in the evaluation attached.

Overall the key concrete themes to inform the offer to localities are as follows:

Every locality is unique, is at a particular point on their journey to achieve key

outcomes, and has a unique array of relationships that need to be considered

in considering improvement.



Facilitation and development skills are relevant and sought to help take this

work forward.

Participants in any core programme should have some accountability to a

local team charged with taking the work forward locally. This team should

include people diagnosed with dementia and their carers. For some

developing such a team should be an early focus of the work.

The scoping process was valuable and in some cases could usefully be

undertaken locally.

It may be helpful to build local capacity to deliver facilitation and

development work.

On the basis of this we are planning to refine our understanding of what is sought

locally in developing local leadership capacity to improve the primary and community

response. This will help co-design approaches with local teams to offering support

that builds on the best of local capacity.



Evaluation

What was great about this event?

Meeting new people and hearing their views and the commitment of those

that came.

Thought provoking in terms of my role as a clinical lead –

approach/behaviour/style. Sharing of ideas with folk from different PCTs.

Well presented!

The ideas and the chance to network.

An opportunity to reflect on where we are and what we might need to put in

place next. It was a bit of a “litmus test” for me.

Meeting other colleagues and finding out about good practice taking place

across the south west.

Enthusiastic speakers. Interactive stuff was good.

Food

Not too large a group.

Opportunity to share ideas and visions with others that I’d not met previously

Useful reflection time (I’ve been challenged to take some ideas back to our

locality), so thanks!

Unfulfilled potential.

Three participants spoke of “A clearer view of the purpose of the meeting and

advance notice of the “offer” would have helped”, “More pre-day

information”, “Most attendees were unaware of the expectations of the day.

Bit more background information on aims of scoping event before the day”,

“A bit more clarity about our aims”. This gave us food for thought as these

were described in two flyers and an accompanying discussion document. We

may need to review how we alert people to these and ensure that the



information transfers when invitations are passed around within

organisations. [agree??]

I wish I had an opportunity to have been involved in a problem such as this 18

months ago – but it still feels a very “real” programme – for now and the

future.

Will get to 10 when the programme has been further defined.

More on change encouragement. More on effective education techniques.

Less rhetoric/jargon/theorising (more practical stuff!).

The one word that summarises how you feel about today is

Optimistic

Encouraging (motivation for future work)

Inspired

Thought-provoking

Positive

Co-transformationalism

Interested

Accepting that change is constant, what do you now see as likely to be most useful

to you in future events

Consider both outcome- (what you need to achieve) and process (how you would like

thing done)?

Sharing of others’ successes/failures/learning. Support to team in tackling

problems/challenges. Mentoring – opportunity to consider my own

style/approach and development as a lead in dementia.

Local support.



Learning new techniques for implementing my ideas and finding how other

people have approached them.

To work with a group of people from our locality to move/leadership and take

forward our thinking. Support/encourage.

The proposals that we fed back on this afternoon.

Outcome: finding out what other PCTs are doing, how useful it is and how

they’re doing it. Process: are meetings the best medium? Newsletter? Named

email contact? SHA comes to us, not the other way round (Mohammad and

mountain!)

Sharing of emerging themes/ideas/buzz words that might have future impact.

…. And a bit of personal reflection

We: What we locally need to do differently as a result of this event?

Clarify how leadership is going to be addressed locally and ensure that it is

reflected in local action plan.

Communicate better with other PCTs but also with consortia locally.

Further engage primary care colleagues.

Identify the people we want to participate – those with potential and those

who can influence. Establish an accountability for the work of our PNB

[clarify?] in line with the suggestions we came up with in our group in the last

session.

Approaching each PCT individually and hopefully involving more influential

people at each area.

Look forward to receiving offer on a local basis.

Time for reflection as team – considering our development needs as a team in

service development.

Keep working together.



Me: what I have learnt about my role and contribution as a result of today.

(How would I like to be part of moving this on?)

Keep vocalising my passion – remain at least “half full” in my sense of

optimism. To move upwards from my score of 6/10.

Early am session re: leadership affirmed role.

It was encouraging to reflect on our progress and my part in this. My

leadership successes and the gaps – I have some ideas about what I need to

do about it and will action!

Coordinate the engagement of primary care. Enthuse and motivate further.

More practical problem-solving than global strategy-devising.

Refreshed my understanding on the leadership element of my role – and able

to recognise how I have/am leading.

The continuing need to ensure that the issues of users and carers/families are

always taken into account.



Attendees at event

Geoff Baines South West Strategic

Health Authority

Associate Director

Helen Bown NHS Gloucestershire Joint Commissioner for Older

People

Nick Cartmell NHS Devon General Practitioner and GP

Lead for Dementia

Tracey Compson NHS Swindon Dementia Strategy/QIPP MH

Project Lead

Bernie Crean NHS Devon Practice Manager

Derek Dodd Alzheimers Society Locality Manager

Derek Dominey Alzheimer's Society Carer - Volunteer

Debbie Donnison Alzheimer's Society Area Manager SW

Sian Evans

Martin Freeman NHS Gloucestershire GP Clinical Lead, Dementia

Jo Gajtkowska South West Development

Centre

Associate Development

Consultant

Sarah Howard NHS Dorset Dementia Project Manager

Claire Leandro North Somerset Council Assistant Director, Adult Care

Susan Nyandoro Devon NHS Community Matron

Sue Olson Somerset Community Head of Rehabilitation



Health

Steve Onyett South West Development

Centre

Senior Development

Consultant

Catheri

ne

Pascoe South West Development

Centre

Tamara Powderley NHS Devon Head of Urgent Care

Ann Redmayne Torbay Care Trust Mental Health

Commissioning Manager

Jenny Richards Devon County Council Joint Strategic Planning &

Commissioning Manager

(Older People's MH)

Alison Rowswell NHS Somerset NSF Development Manager

Shirley Ruane Four Seasons Health Care Home Manager

Helen Vaughan NHS Gloucestershire Commissioning Development

Manager for Dementia

Services

Jane Viner Royal Devon & Exeter NHS

Foundation Trust

Deputy Director of Nursing

Sally White Four Seasons Health Care Leader - Dementia Team

Julie Wilson NHS Plymouth Mental Health Commissioner


Documents

Improving care for people with dementia while in hospital · Web viewThe one word that summarises how you feel about today is 20. ... Dementia Declaration – offering “more carrot