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