maximum responsibilities
TRANSCRIPT
Maximum Responsibilities. Maximum Responsibilities. Minimum Rights Minimum Rights
A very Heavy Load for:A very Heavy Load for:CarersCarers
Family membersFamily members
Nearest relativesNearest relatives
FriendsFriends
Buddies and befriendersBuddies and befrienders
SupportersSupporters
Next of KinNext of Kin
Nominated decision Nominated decision makersmakers
Uncle Tom Cobley and allUncle Tom Cobley and all
Policy shift to community-Policy shift to community-based care will produce based care will produce many “informal”carers.many “informal”carers.
““Carers” is a term that Carers” is a term that may have limitationsmay have limitations
Words impute personal Words impute personal characteristics/motivaticharacteristics/motivations that may not ons that may not reflect realityreflect reality
Key AreasKey Areas
No formal No formal recognition of recognition of carers rightscarers rights
Policy documents Policy documents rarely turn into rarely turn into meaningful action meaningful action on changeson changes
The assumption of clear The assumption of clear agreements and agreements and supportive supportive relationships between relationships between carer and service usercarer and service user
The “noble” carer acting The “noble” carer acting disinterestedly in a disinterestedly in a caring communitycaring community
Stigma attaching to Stigma attaching to relatives and friendsrelatives and friends
Often the exploding of Often the exploding of the myth of the myth of symbiosis occurs symbiosis occurs during disputes during disputes between parties between parties under mental health under mental health legislationlegislation
Increasing emphasis Increasing emphasis on human rights on human rights (Storck vs. Germany ECHR 2005; (Storck vs. Germany ECHR 2005; Shtukaturov vs. Russia ECHR Shtukaturov vs. Russia ECHR 2010)2010)
Want to do what’s Want to do what’s “best” for the person“best” for the person
Caught between rock Caught between rock and a hard placeand a hard place
Would welcome an Would welcome an alternative decision-alternative decision-maker in difficult maker in difficult and emotionally and emotionally upsetting upsetting circumstancescircumstances
““gatekeepers” to gatekeepers” to specialist servicesspecialist services
AdvocatesAdvocates
Decision makersDecision makers
Supports –physical, Supports –physical, emotional etc.emotional etc.
Managing risk at home Managing risk at home and in the communityand in the community
Multiple roles= Multiple roles= inevitable conflictsinevitable conflicts
Carers are essential in Carers are essential in cost-effective cost-effective community carecommunity care
In-patient bed costs?In-patient bed costs?
Guesstimates?Guesstimates?
Savings on medicationSavings on medication
Carers saving UK Carers saving UK economy 57 billion economy 57 billion (carers UK 2006)(carers UK 2006)
Hobson’s Choice?Hobson’s Choice?
Willingness is Willingness is assumedassumed
Biologically Biologically programmed?programmed?
Legal guardian?Legal guardian?Moral, financial, Moral, financial,
practical supports?practical supports?Caring for Caring for
individuals that the individuals that the community rejectscommunity rejects
Self-sacrifice –Why?Self-sacrifice –Why?
Saccarine rhetoric Saccarine rhetoric abounds (expert carer)abounds (expert carer)
Ambivalent feelings Ambivalent feelings rarely acknowledgedrarely acknowledged
Home is where the carer Home is where the carer isis
Competing philosophiesCompeting philosophies
Exploitation – absense of Exploitation – absense of choicechoice
No training exists for No training exists for this rolethis role
Internal and external Internal and external resourcesresources
Partner capacity and Partner capacity and conflictconflict
Life outside of the Life outside of the designated roledesignated role
Familial ideologyFamilial ideology
Only 24% felt that staff Only 24% felt that staff treated them with treated them with respectrespect
IsolationIsolation
93% felt emotional 93% felt emotional health sufferedhealth suffered
Information, housing, Information, housing, advocacy, meaningful advocacy, meaningful activities, alternative activities, alternative therapies, support for therapies, support for themselves, inclusion themselves, inclusion in decisions.in decisions.
RespiteRespite
InformationInformation
DignityDignity
RespectRespect
Active participationActive participation
RightsRights
Recovery for the Recovery for the individualindividual
Clear routesClear routes
Contact numbersContact numbers
Challenging the Challenging the myths- e.g. Identity myths- e.g. Identity of interestof interest
Independent living Independent living for allfor all
Reality of modern lifeReality of modern life