Policy shift to community- based care will produce many “informal”carers. “Carers” is a term that may have limitations Words impute personal characteristics/motivatio ns that may not reflect reality Words impute personal characteristics/motivatio ns that may not reflect reality

Key Areas No formal recognition of carers rights Policy documents rarely turn into meaningful action on changes

The assumption of clear agreements and supportive relationships between carer and service user The “noble” carer acting disinterestedly in a caring community Stigma attaching to relatives and friends

Often the exploding of the myth of symbiosis occurs during disputes between parties under mental health legislation Increasing emphasis on human rights (Storck vs. Germany ECHR 2005; JT vs UK ECHR 2000)

Want to do what’s “best” for the person Caught between rock and a hard place Would welcome an alternative decision- maker in difficult and emotionally upsetting circumstances

“gatekeepers” to specialist services Advocates Decision makers Supports –physical, emotional etc. Managing risk at home and in the community Multiple roles= inevitable conflicts

Carers are essential in cost-effective community care In-patient bed costs? Guesstimates? Savings on medication Carers saving UK economy 57 billion (carers UK 2006)

Hobson’s Choice? Willingness is assumed Biologically programmed? Legal guardian? Moral, financial, practical supports? Caring for individuals that the community rejects

Self-sacrifice –Why? Saccarine rhetoric abounds (expert carer) Ambivalent feelings rarely acknowledged Home is where the carer is Competing philosophies Exploitation – absense of choice

No training exists for this role Internal and external resources Partner capacity and conflict Life outside of the designated role Familial ideology

Only 24% felt that staff treated them with respect Isolation 93% felt emotional health suffered Information, housing, advocacy, meaningful activities, alternative therapies, support for themselves, inclusion in decisions.

RespiteInformationDignityRespect Active participation Rights

Clear routes Contact numbers Challenging the myths- e.g. Identity of interest Independent living for all Reality of modern life