Bill of Rights Submission

What are your issues/needs in relation to carers?
· Training in relation to care – carers want their voices heard
· Carers should be integral part of services e.g. respite, signposting, and training
· Health and Welfare of carers
· Specific issues around carers in rural areas
· Clarification around language – eg carers at home/home carers and entitlements
· Recognition of carers, both by themselves and professionals
· More funding needed for groups working with carers/ex-carers
· Medical profession to have more of an interest/time in older people
· Concern re working groups in BOR forum (no specific group for carers/older people)
· Rights of grandparents
· Lack of respite places/emergency respite
· Availability of social services
· Family involvement in meetings – needs of primary carer considered, legality of those family members who have not being caring
· Access to medical services particularly for older people (and who do you ring)

What is particular about the Northern Ireland context in relation to carers?
· The last 30 years of the Troubles has lead to a high number of carers in Northern Ireland looking after those injured or traumatised in the Troubles
· Silence around carers and their situation, communities keep to themselves
· Stigma and discrimination around dependants who were directly involved in the Troubles
· More disability in Northern Ireland compared to rest of UK
· Northern Ireland has a culture and stigma about speaking out and asking for services and support, especially around mental health issues
· Drug culture linked to paramilitaries
· Alcohol abuse culture
· People suffering from post traumatic stress which may only be manifesting now in times of peace

What are the barriers to protecting the rights of carers?
· Lack of training/understanding/support of professionals – professionals trained for the patient but not the carer
· Unacknowledged job of carer
· Need practical support. Lack of choice in certain areas.
· Isolation due to caring role
· Lack of transport, help, company
· No policies/procedures to protect carers
· Not enough information regarding the law – don’t know where to get help, services
· Lack of information/funding (general or for carers rights regarding individual situation)
· hardship (financial, social, emotional, educational)
· Lack of services in rural areas
· Carers restricted in the number of “allowed” payment for work, before losing Carers Allowance; contributing to poverty and low self esteem
· Carers have a lack of confidence in vocalising their needs

What rights do you think are needed in this area?
· The right to services/resources that would allow carers to access information, training, support and counselling (especially after going through the trauma of hearing a diagnosis)
· The right to advocacy for carers
· The right to be acknowledged as experienced in caring for the dependant
· The right for a carer to have a choice to share caring responsibilities, i.e. more family work – not just one carer
· The right to vote, for those being cared for
· The right to clear Information to be made available to carers for example about benefits, their rights, signposting services , resources,
· The right to have a dependant’s diagnosis explained
· The right to more information and choice regarding respite and its availability
· The right to adequate contact and support from social services, regular reviews and continuity of services
· The right for carers to have their needs placed on an equal footing to those being cared for
· The right for pensioners who are caring to be entitled to Carers Allowance, the same as younger carers
· The right to have guaranteed pension rights
· The right for children to be free from caring responsibilities
· The right to mental health services support
· The right to a joined up approach to ‘care’ services
· The right to good health and freedom from mental pressures associated with being a primary carer