mapping care: a case study of dementia service provision in the north east of england - carey,...
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Mapping CareA Case Study of Dementia Service Provisionin the North East of England
Daniel Carey, Paul Rodgers, Andy Tennant, Katie DoddNorthumbria University
[email protected]@danielpcarey
Design Disruption in Health and Social Care
AHRC Funded PhD Research Project
Embedded within Newcastle Carers charity
Cheap, small but scalable, hunches and experimentsFavour radical change over incremental advances
Ever tried. Ever failed. No matter.Try again. Fail again. Fail better.Samuel Beckett
Unpaid Carers
A person of any age who provides unpaid support to familyor friends who could not manage without their help.
No formal training or assistance
£119bn annual value to the UK economy(the entire NHS is £109bn annually)
Social Isolation, Financial Dependence,Anxiety, Depression, Anger, Guilt,Uncertainty, Marginalization, Complex Relationships
Newcastle Carers
Newcastle Carers provide
Emotional supportPractical advice and assistanceCounsellingSupport groupsComplementary Therapy
Around 2500 people access the service10% of the estimated number of carers in the area
Their challenges include
Uncertain funding future
Resource poor
Unequal relationships with funders
Very specific remit - unable to help some people
Lack of clarity about the service
Project aims
“First I shoot the arrow, then I draw the target”
Investigate the experiences of dementia carers,their own aims and motivations
Consider the accuracy of the “pathway” model
Create a resource which can be shared and discussed –and to justify further intervention
Methodology
Methodology
How to make this consistent and understandable?
“Maps are errors to arrive at truth”
{Likert Scale}Colour schemeMaking dense information understandable
Reconstructing the Information
Carer feedback
“Cathartic” to talk about their experienceswithout an agenda
“There might have been a storm in her head for years”
“[Newcastle Carers] should be the first point of contact.”
“They offered her audiobooks to keep her busy – but theyknew she was deaf!”
“I felt tremendously lonely and as if I’d let mum down.”
Observations
Information SharingCarers have to repeat their stories each time they accessa new service – often during a crisis
The need for more consistent supportEarly GP engagementRandom nature of Newcastle Carers referralsLimited number of occasions to help people
The role of Social WorkersSuspicion/uncertainty about what they can offer
Observations
Not always firefightingBest times for further training / assistance?Help prepare people for the future?
The value of intangiblesEmotional support and “being heard”, sharing experiencesCan other organizations replicate this?
Carers cannot be an afterthoughtAll carers felt they would’ve benefitedfrom earlier support
Observations
The value of physical artefactsAdvocate for carers in a different way Difficult to ignoreProvokes different conversations
Is this “Disruptive Design”?
Designing that does not already -Future, Fiction, Speculate, Criticize, Provoke,Discourse, Interrogate, Probe, Play –is inadequate designing.Cameron Tonkinwise, “Just Design”
Disruptive in a context where the experiences of carersare routinely ignored
Promote carers as an asset and highlight the need to designsupport services which include them at all stages
