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 on the needs of dementia carers
Scoping report available to view at exhibition and available online here: http://www.yhahsn.org.uk/improvement-academy/current-improvementprojects/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.
2. 3. 4. 5. 6. 7. 8.
Communications with dementia carers in hospital settings Post diagnostic support and sign posting Identifying carers Evaluating outcomes and impacts of support interventions for carers Developing informal support systems Working carers Identifying the health needs of carers 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 of 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 outcome 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-improvementprojects/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 over 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.
2. 3.
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? Share examples of good practice from across the region. 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 other 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 our 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 are recognised as essential partners in care - valuing their knowledge and the support they provide to enable the person with dementia to live well
The 5 Aims of our shared vision 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 on-going and changing needs to maintain their own health and well-being
The 5 Aims of our 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
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.
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
Examples of Carers’ Resources on Carers’ Call to Action website 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
Please Sign Up & Tell Everybody about our shared vision
www.dementiaaction.org.uk/carers Email:
[email protected] 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 our 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
The 5 Aims of our shared vision 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 our 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
The 5 Aims of our shared vision 4. Carers of people with dementia have assessments and support to identify the ongoing and changing needs to maintain their own health and well-being
The 5 Aims of our 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
Please Sign Up & Tell Everybody about our shared vision
www.dementiaaction.org.uk/carers Email:
[email protected] 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
1. 2.
3.
No such thing as a ‘typical journey’ – need personalised approach That said, 10 key ‘trigger points’ identified:
When dementia is diagnosed When the carer takes on an ‘active’ caring role When the capacity of the person with dementia declines
4.
5. 6. 7.
When the carer needs emotional support, and / or a break from caring When the person with dementia loses their mobility When the person with dementia has other health problems When the carer has to cope with behaviour problems
When the carer’s own circumstances change When the person with dementia becomes incontinent 10. When decisions about residential care / end of life care are made 8. 9.
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
2
Introduce yourself and share something that works well regarding information for dementia carers in your locality and also a challenge that you face. 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 order? ▪ 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 options: 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, occupational 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 of 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.....
Colourful and informative Includes a Personal Budgets Pathway Case studies and quotes – all local people Clear language Includes signposting information
“the group have enjoyed taking part in the project”
“The different use of colour was liked and so was the pathway”
“Every one liked the stories - it made the situations clear”
“The information sheets at the end will be useful”
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
[email protected] 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 of services
Thank you for listening Akhlak Rauf Project Manager Meri Yaadain Dementia Team 01274 431308
[email protected]
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:
[email protected] 01274 383925
Ruth Hannan
Policy & Development Manager ( Mental Health), Carers Trust
Thank you for coming
Please could you complete evaluation forms and return your badges before leaving
