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-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 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-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 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. 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 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 2. Carers of People with dementia have recognition dementia are recognised as of their unique experience – essential partners in care - valuing their knowledge 'given the character of the and the support they illness, people with provide to enable the dementia deserve and need person with dementia to special consideration... that live well meet their and their caregivers needs' World Alzheimer Report 2013 Journey of Caring
The 5 Aims of our shared vision 4. Carers of people with 3. Carers of people with dementia have assessments dementia have access to and support to identify the expertise in dementia care on-going and changing for personalised needs to maintain their information, advice, support own health and well-being and co-ordination of care for 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
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