www.yhahsn.org.uk/improvement-academy @Improve_Academy Ruth Hannan - - PowerPoint PPT Presentation

Improving access to information for carers: Getting the right information at the right time in the right way

www.yhahsn.org.uk/improvement-academy @Improve_Academy

Ruth Hannan

Policy & Development Manager ( Mental Health), Carers Trust

Val Rhodes – InRhodes (Consultancy) Ltd

Worked with the Yorkshire & Humber AHSN Improvement Academy to carry out a scoping exercise

• n the needs of dementia carers

Scoping report available to view at exhibition and available online here: http://www.yhahsn.org.uk/improvement-academy/current-improvement- projects/support-for-carers-of-people-with-dementia/

 The Y&H AHSN Improvement Academy focused on a

number of the high impact innovations which included the support needs of carers of people with dementia across the Yorkshire and Humber region.

 Identify existing levels of support available to

dementia carers, the shared challenges and gaps and recommendations for the focus of potential improvement.

 A limited review of relevant policy documents and

research literature and the views of key regional stakeholders and carers.

• 1. Communications with dementia carers in

hospital settings

• 2. Post diagnostic support and sign posting
• 3. Identifying carers
• 4. Evaluating outcomes and impacts of support

interventions for carers

• 5. Developing informal support systems
• 6. Working carers
• 7. Identifying the health needs of carers
• 8. Information for carers on support available

 Support for carers when the person with dementia was

admitted to a hospital was variable and at times poor.

 No consistent approach to the provision of information given

to carers when they are in contact with acute services.

 Good practice:

• Workers from national carers organisations or volunteers available to

support carers.

• Carers information packs or bags available.

 Gap in the provision of on-going support and sign posting for

carers post diagnosis.

 A need for improved connections between secondary care

services, third sector and community services to ensure effective post diagnostic support for carers.

 A lack of consistency in what information is given to carers

across organisations, localities and regionally.

 Good practice:

• Admiral Nurses in Kirklees provide carers support.
• Education programmes run by third sector.

 A concern that a large number of carers were not

accessing support services because they had not yet been identified as a carer, did not define themselves as a carer, or were less able to access information and support because of language, cultural or geographical barriers.

 A need to identify more effective ways of making

information easily accessible to all.

 There was a lack of robust mechanisms for the early

identification of carers.

 Lots of support services, networks and

initiatives for dementia carers - less in terms

• f evaluating the impact of these on the

carer’s physical or mental health or ability to care and therefore determine their effectiveness.

 Some regional work on the development of

• utcome measures.

 Need to develop more informal and less stigmatising

models of support that maintain community networks for those with dementia and their carers.

 Stakeholders described the challenge of keeping up to

date with new services and developments.

 Good practice:

• Dementia Friendly Communities
• Development of a website designed to provide support

and advice from a carers perspective

 Good practice:

• The University of Bradford provide a support

group for staff who are also dementia carers.

 No other examples given and little

information available regionally - identified as a potential development area

 A gap in support structures for carers that

take into account their physical and mental health needs.

 No agreed processes for carers to receive

health checks from health professionals as part of their support packages.

 Good Practice:

• Plans in Bradford for carer support workers in

Primary Care.



The challenge is not a lack of information but coordinating what there is to ensure carers get appropriate and timely information.



Lots of different formats – varying from training courses, leaflets, helplines, websites and information packs provided by a whole range of services.



A lack of coordination in terms of who gave out information sometimes resulting in too much or too little information.



A need for innovative ways to ensure information is available to those in rural area or from BME groups.



There was a lack of agreement on the needs of carers in relation to the information they require at points along the caring pathway.



Good practice:

• Information bags, web sites, booklets, single contact points.

 This was a recurring theme from all the stakeholders and was

raised as an area of challenge.

 Supported by the Y&H Regional Dementia Leads group as a

priority area.

 The Improvement Academy is positioned to undertake this

work in collaboration with partners both locally and regionally.

 An opportunity to develop improvements across the region

and support existing developments.

 An 'Effectiveness Matters’ paper – ‘Dementia

Carers – Effective information, support and services to meet their needs’.

 Further consideration given to the themes and

gaps for potential developments and / or improvements.

 Support to this regional event on

Improving access to information for carers – getting the right information at the right time in the right way

Effectiveness Matters is a summary of reliable research evidence about the effects of important interventions for practitioners and decision makers in the NHS

Hard copy in delegate pack, available electronically below: http://www.yhahsn.org.uk/improvement-academy/current-improvement- projects/support-for-carers-of-people-with-dementia/

 A stated preference for staged information

giving, avoids an overwhelming quantity of information.

 Signposting to reliable local and national

information sources is essential.

 Ensuring that information is given consistently

• ver time could be achieved by the use of an

information checklist by professionals.

 Online information appears beneficial and

combining tailored information with interaction between caregivers shows promise.

• 1. Agree principles for improvements – what are

the key stages of the caring journey at which information is needed, what information is needed and how can it be made accessible to all?

• 2. Share examples of good practice from across

the region.

• 3. How best to deliver improvements across the

region – what could be developed and how might outcomes be measured?

 What can we produce that would be useful both

locally and regionally?

 What can we learn from each other?  Can we use what has already been developed in

‘A Road Less Rocky’ and apply it to our services ?

 Can good practice be shared or rolled out – do

• ther areas have check lists, successful ways of

making information accessible or innovative approaches?

 In what ways can the Improvement Academy

support you further either locally or regionally?

Dementia Action Alliance The Carers’ Call to Action

Supporting the needs and rights for family carers of people who have dementia Louise Langham

The Core Steering Group of The Carers’ Call to Action

‘A diagnosis of dementia is given not just to one person – it is given to

a spouse, a partner, a child and the extended family’

Alistair Burns

The 5 Aims of

• ur shared vision
• 1. Carers of People with

dementia have recognition

• f their unique experience –

'given the character of the illness, people with dementia deserve and need special consideration... that meet their and their caregivers needs' World Alzheimer Report 2013

Journey of Caring

2. Carers of People with dementia are recognised as essential partners in care

• valuing their knowledge

and the support they provide to enable the person with dementia to live well

• 3. Carers of people with

dementia have access to expertise in dementia care for personalised information, advice, support and co-ordination of care for their own health and well-being

• 4. Carers of people with

dementia have assessments and support to identify the

• n-going and changing

needs to maintain their

• wn health and well-being

The 5 Aims of

• ur shared vision

5. Carers of people with dementia have confidence that they are able to access good quality care, support and respite services that are flexible, culturally appropriate, timely and provided by skilled staff for both the carer and the person for whom they care

The 5 Aims of

• ur shared vision

Example No. 3 on Checklist - A dementia adviser/support worker/Admiral Nurse to provide on-going & timely access to local, face to face, personalised, dementia expertise and practical advice as well as psychological & emotional support

Top 20 Checklist for Commissioners – Examples of Services Supporting Family Carers

We are starting to collate examples of good practice where services support family carers of people living with dementia. If you provide, or know of, a good service supporting family carers needs and rights. We really need your input in developing this really important resource.

A Road Less Rocky - Supporting People with Dementia' Carers Trust, Social Policy Research Unit, The University of York, Firefly A report from Carers Trust has found that carers of people with dementia are not getting the support and advice they often desperately need. www.carers.org 'The Triangle of Care Carers Included: A Guide to Best Practice for Dementia Care' - Carers Trust, Royal College of Nursing

Examples of Carers’ Resources on Carers’ Call to Action website

Please Sign Up & Tell Everybody

about our shared vision

www.dementiaaction.org.uk/carers Email: admin@dementiaaction.co.uk Twitter: @DAAcarers

Dementia Action Alliance The Carers’ Call to Action

Supporting the needs and rights for family carers of people who have dementia Ray Carver

The 5 Aims of

• ur shared vision

1. Carers of People with dementia have recognition of their unique experience – 'given the character of the illness, people with dementia deserve and need special consideration... that meet their and their caregivers needs'

World Alzheimer Report 2013 Journey of Caring

• 2. Carers of people with dementia

have access to expertise in dementia care for personalised information, advice, support and co-ordination of care for their own health and well-being

The 5 Aims of

• ur shared vision

The 5 Aims of

• ur shared vision
• 3. Carers of People with dementia

are recognised as essential partners in care - valuing their knowledge and the support they provide to enable the person with dementia to live well

• 4. Carers of people with

dementia have assessments and support to identify the on- going and changing needs to maintain their own health and well-being

The 5 Aims of

• ur shared vision

5. Carers of people with dementia have confidence that they are able to access good quality care, support and respite services that are flexible, culturally appropriate, timely and provided by skilled staff for both the carer and the person for whom they care

The 5 Aims of

• ur shared vision

Please Sign Up & Tell Everybody

about our shared vision

www.dementiaaction.org.uk/carers Email: admin@dementiaaction.co.uk Twitter: @DAAcarers

Ruth Chamberlain

Commissioning & Change Implementation Officer (Dementia) North Yorkshire County Council (p/t from October 2013) Senior Researcher, Firefly Research and Evaluation (p/t) Member of ‘Road Less Rocky’ research team

Undertaken by Firefly Research and Evaluation and

SPRU University of York Commissioned by Carers Trust Published 2013 www.carers.org/sites/default/files/dementia_report_ road_less_rocky_final_low.pdf (see display stand)

 Key stress points along the ‘caring journey’

when information and support required

 Key types of information and support / at

what times - in relation to caring for the person with dementia

 Key types of information and support / at

what times - in relation to the carer’s own life and well-being

 Limited literature review  ‘Timeline’ interviews (22 people)  Focus groups (24 people)  National survey of carers – online / paper

based (325 responses)

 Fieldwork covered 4 nations

Above line: Map changes for person with dementia – key life events / impact of dementia / other health episodes, etc.

• Between lines: Map service inputs – statutory and informal
• Below line: Map changes for carer

– nature & extent of caring role / key life events /carer health / impact of dementia

Ethical framework vital

 Inform and ‘prime’ carers – opt out at any stage  Choices regards level of active participation  Prompting framework – flexible/responsive  Supportive environment and protected space  Post involvement support  Information and signposting leaflet

 No such thing as a ‘typical journey’ – need

personalised approach

 That said, 10 key ‘trigger points’ identified:

• 1. When dementia is diagnosed
• 2. When the carer takes on an ‘active’ caring

role

• 3. When the capacity of the person with

dementia declines

• 4. When the carer needs emotional support,

and / or a break from caring

• 5. When the person with dementia loses their

mobility

• 6. When the person with dementia has other

health problems

• 7. When the carer has to cope with behaviour

problems

• 8. When the carer’s own circumstances change
• 9. When the person with dementia becomes

incontinent

• 10. When decisions about residential care / end
• f life care are made

When many of these occur and in what order will be different each carer. Early stages critical. Need to get ‘common core’ information right.

Val Rhodes

1

Introduce yourself and share something that works well regarding information for dementia carers in your locality and also a challenge that you face.

2

Looking at the ‘Road Less Rocky’ 10 stress points along the caring journey and the information needs suggested– ask yourselves

▪ Are these the right critical points and are they in the right

• rder?

▪ Are there any points missing that we want to add? ▪ Is the information suggested enough - are there any gaps?

Val Rhodes

 In the same groups  Each table focussing on one of the 10 critical

points on the caring journey

 Ask yourselves –

• In what format should the information be given?
• Who is the best person to give that information?
• What might be the barriers and the solutions for

dementia carers to get the:

Right information, by the Right person, at the Right time?

Helen Turner & Ian Mc Creath, Alzheimer’s Society

 Identify and overcome barriers experienced by

people with dementia and their carers in accessing personal budgets and direct payments

 Improve access to good quality information and

advice about personal budgets and direct payments

 Lack of information about personal budgets

and direct payments that is targeted at people with dementia

• Alzheimer's Society report “Getting Personal” 2011

 Carers under strain – health and well being

affected

 People with dementia more likely to present

at a crisis and more likely to be at risk of residential care

Step 1: What do carers and people with dementia know now about services and support? Dementia cafe consultation

“The main problem is you don’t know what is available and you don’t really know who to ask. It’s a steep learning curve”

“Customer Services centre - it is very hard to get

through and when you do get through you have to repeat information again and again” “Written information needed- people don’t use the internet always” “How can I get a break from caring?” “I need information now so I can plan ahead”

 Mapping exercise  Held two workshops  Invited key people  Everyone came with

examples of what information they provide, where and when  Mapped it out on a long piece of paper

Focussed on improving information at two key information points:

 County Council Customer Services Centre –

1st point of contact

 Carers groups & Dementia Support groups

Could be different key points for different areas

 Visited the CSC with a dementia support

worker

 Raised awareness of dementia support needs  Shared information about barriers carers face

in accessing CSC

 Provided additional information about carers

and dementia services

 Learnt how to navigate the phone system...

Which would you choose ?

First choose one from the following 5

• ptions:
• 1. Adult services, blue badges,

HPAS, Care payments and Occupational Therapy

• 2. Children and family services
• 3. Waste, transport, bus passes,

highways, trees and grass verges

• 4. Libraries, births marriages and

deaths

• 5. All other services

Then choose one from the following 4 options:

• 1. Blue badges
• 2. Care payments
• 3. MASH: Adults being

abused or at risk

• 4. All other services,

including social care

Leaflets now include how to access information about adult social care services Press: Option 1, then option 4 Gets you through to specialist Adult Access team (carers workers, social care staff,

• ccupational therapy) ...

...rather than generic customer service advisors

 Helping carers to

prepare for a social care assessment

 Held 2 workshops with

a social worker

 Dementia support

workers ( Alzheimer’s Society) attended

 Went through the

paperwork

 “I found it very helpful

to see a Community Care Assessment form and to hear from someone who has lots

• f experience using

them, how it works in practice.” Dementia support worker

 Existing County Council

fact sheet about social care assessments – not user friendly, overly long, dense text, no images

 Worked with carers and

people with dementia to design a new County Council leaflet explaining Personal budgets

 From this to.....

“Every one liked the stories - it made the situations clear” “The different use of colour was liked and so was the pathway”

“The information sheets at the end will be useful” “the group have enjoyed taking part in the project”

Colourful and informative Includes a Personal Budgets Pathway Case studies and quotes – all local people Clear language Includes signposting information

 We have provided carers and people with

dementia with simpler information about getting support and why it is important

 We have raised awareness of the barriers

carers face in accessing information at the time they need it

 Commitment from both Adult Social Care

and Health and Clinical Commissioning groups to continue to improve dementia carers access information.

Tom Chrisp

Arc Research and Consultancy Ltd tom@breakfast.solis.co.uk Tel: 07527448551

www.dementiacarer.net

Celebrity Angela Rippon, presenter of the TV show Amazing Greys and an ambassador for Alzheimer’s Society : “This is a terrific resource which I hope carers will find really useful.”

Breaking cultural barriers in caring for Dementia

Akhlak Rauf Meri Yaadain Dementia Team

Department Adult & Community Services

Are the needs of BME carers any different to you?

• Dementia does not discriminate
• Barriers to information or access to services
• Equality or Equity
• Making a meaningful difference
• Learning from the good practice

Improving the quality of life

• Knowing Your Communities
• Culturally competent in your delivery
• A listening ear
• Raise awareness to target early diagnosis
• Support carers and families appropriately
• Challenge taboo and stigma

Community Development Approach

• Community leaders v gate keepers
• Putting the person at the heart
• Is language a barrier or is there more to it

than that?

• Reach out as opposed to provide access
• Hard to reach or tick your box

Specifics

• Do ‘They look after their own?’
• Religious or cultural reasons for caring
• Communities within communities
• Breaks/respite to appropriate places
• Role of decision maker(s) – carer or

next of kin

Making a difference

• Empathy
• Resources – website, DVD, leaflets,

newsletter, support group, roadshows

• Magazine articles, booklets, guide
• Partnership work with voluntary and

statutory organisations

• Dementia Friendly communities –

everyone’s business (eg GPS)

Where to from here?

• A voice that is loud enough given the

depth of inequalities

• Moving on from early onset to have

effective services

• Challenging planning, access and delivery
• f services

Thank you for listening

Akhlak Rauf Project Manager Meri Yaadain Dementia Team 01274 431308 akhlak.rauf@bradford.gov.uk

Val Rhodes

 Again in the same groups – thinking about

the pathway as a whole:

 What improvements would make a

difference to the quality of information sharing with dementia carers?

 Are there any developments / good practice

happening elsewhere that could be applied more widely?

 How do we measure improvements, how do

we know if we have made a difference?

Val Rhodes

 All of todays information will be brought

together into a single document and shared with todays attendees and networks across the region.

 The Y&H Improvement Academy is available

to support organisations, localities or the region in improving information to carers.

 Contact:

kirste.mellish@bthft.nhs.uk 01274 383925

Ruth Hannan

Policy & Development Manager ( Mental Health), Carers Trust

Thank you for coming

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