In 2015, BPD Community consulted with its then carers (families and friends of someone with lived experience of BPD). There has been much written about the carers of people with mental illness but it seemed that this seemed to miss the mark when the experience of carers of someone with BPD was taken into account. After considering the reading, a draft paper was circulated amongst carers which lead to a redraft, and this process was repeated four times until it was felt that the document sufficiently represented the concerns of carers of someone with BPD.
At an Info Night in Oct 2015, the paper was presented and accepted by the carers present. At that meeting a motion from the floor was accepted and voted upon. It was unanimously agreed that the priority concern for a family member of someone with BPD was to get a diagnosis. It was recognised that a diagnosis meant not only being able to assess the best treatment for their loved one, but it also was then possible for the family to begin to learn how they could best support their loved one and could seek support for themselves also.
Below is the BPD Community Position Paper on Carers and it informs our work with carers.
National Carer Recognition Act (2010)
The National Carer Recognition Bill passed through both houses of Parliament to be enacted as legislation on 28 October 2010.
The Act aims to formally acknowledge the valuable contribution that carers make to Australian society. It defines what is a carer and sets up reporting and consultation arrangements for certain public service agencies. The 'Statement of Australia’s Carers' sets out ten principles to guide how public service agencies and their funding providers should treat and consider carers.
It is part of a broader National Carer Recognition Framework that commits the Government to the establishment of national goals relating to carers, a National Carer Strategy, and three year action plans to improve policy and service delivery so that they better support caring families. (http://www.carersvictoria.org.au/facts/national-carer-initiatives)
All carers should have the same rights, choices and opportunities as other Australians, regardless of age, race, gender, disability, sexuality, religious or political beliefs, Aboriginal or Torres Strait Islander heritage, cultural or linguistic differences, socioeconomic status or locality.
Children and young people who are carers should have the same rights as all children and young people and should be supported to reach their full potential.
The valuable social and economic contribution that carers make to society should be recognised and supported.
Carers should be supported to enjoy optimum health and social wellbeing and to participate in family, social and community life.
Carers should be acknowledged as individuals with their own needs within and beyond the caring role.
The relationship between carers and the persons for whom they care should be recognised and respected.
Carers should be considered as partners with other care providers in the provision of care, acknowledging the unique knowledge and experience of carers.
Carers should be treated with dignity and respect.
Carers should be supported to achieve greater economic wellbeing and sustainability and, where appropriate, should have opportunities to participate in employment and education.
Support for carers should be timely, responsive, appropriate and accessible
Victorian Carer Recognition Act (2012)
The Carers Recognition Act came into effect on 1 July 2012 and officially recognises care relationships and the role of carers in our community.
The organisation that represents families and carers of people experiencing mental illness and emotional distress in Victoria.
As carers of people with Borderline Personality Disorder we feel our needs are not recognised and not met. While our needs have much in common with the needs of all carers, we believe that because of the nature of BPD and because of the stigma and discrimination that exists within the helping professions, our needs are different.
BPD is a serious mental illness where the person has difficulty developing and maintaining positive personal relationships. The person with BPD will often rely heavily on the carer in a demanding and draining close relationship which can include refusing the support of and completely rejecting the carer (and other family members). Those closest to the person with BPD are often challenged in their relationship since the reliance for care can occur simultaneously with rejection, or the rejection can be so absolute as to shut family and loved ones out of the person’s life completely.
BPD can be damaging to all family members and as a consequence the mental health of carers is often vulnerable.
BPD is stigmatised and discriminated against in the general community, this is complicated by a general lack of knowledge of the illness. However, it is the stigmatisation and discrimination in the services that are supposed to be a support that hurts the most. From psychiatrists to nurses, to admin staff, help line personnel and social workers, discrimination is a unifying feature of the experience of all carers and people with BPD. This is compounded by the lack of access to services and treatment for our loved ones. Given the nature of BPD, when our loved ones are ready to accept treatment, it is often not available or not appropriate to their needs.
People with BPD often have complex difficulties with co morbidity, in particular drug and alcohol related difficulties that require a dual treatment program. Depression and anxiety are familiar problems for people with BPD, as are eating disorders. A flexible public mental health system with appropriate case management is essential. If the BPD is not treated, it is recognised that the co-morbidity disorders cannot be treated successfully.
People with BPD may be living in difficult circumstances. They may be homeless, long term unemployed, in debt or suffer other living difficulties. They need supports outside of therapy, to assist them with finding employment, helping them with their accommodation, household management and budgeting. People with BPD are overrepresented in prisons. People with BPD who live in rural areas have geographic isolation and compounded lack of access to services. People with BPD may be adolescents, they may be elderly – people with BPD have age related special needs. People with BPD need more than just therapy.
We the carers of people with BPD want our loved ones to be well.
WHAT DO WE WANT
For our loved ones we want:
An early and accurate diagnosis;
Emergency Department response based on knowledge about BPD and commitment to the addressing needs of people with BPD;
Treatment readily available in the adequately resourced public system;
A mental health system (private and public) that responds appropriately;
To be a part of the treatment process.
We want a mental health system that acknowledges that recovery is possible and that we are not the cause of our loved ones illness. We want a responsive non judgemental, non stigmatising, non discriminating mental health system with easy access to diagnosis and treatment that follows the National Clinical Practice Guidelines for the Management of BPD, and that includes us as part of the solution.
For ourselves we want:
Training in the techniques to help us support our loved ones;
Support for ourselves in our roles as carers;
Access to treatment in the public health system for our own mental health needs;
Access to the latest research and information on BPD.
We want a public mental health system that recognises the importance of the role of carers of people with BPD and is non judgemental, non stigmatising and non discriminatory. We want a system that supports the education, training, support and wellbeing of carers of people with BPD.
For our BPD community we want:
Research on all aspects of BPD, in particular the prevalence of BPD in Australia and in special communities such as prisons or communities which have experienced trauma;
A funded strategy to address the stigmatising and discrimination that affects the BPD community, and therefore the wider community, one that targets the clinical and helping professions;
A public and private mental health system that is responsive to the needs of the BPD community.
We want an up to date, responsive mental health system that is non judgemental, non stigmatising and non discriminatory.
Our priority is:
To advocate for early and accurate diagnosis of BPD.