The Care Services Improvement Partnership summarised the findings of the ‘Carers and Families of People with a Diagnosis of Personality Disorder Conference’ held in October 2005 (CSIP, 2006). The aim of the conference was to engage with carers to find out what the impact of caring for people with personality disorder meant for them, to identify areas for improvement and to identify good practice. The report of that conference is summarised below.
4.5.2 Diagnosis and stigma
Carers stated that obtaining information about the diagnosis from healthcare profes- sionals was difficult. They felt that psychiatrists did not want to use the term ‘person- ality disorder’ and that they often lacked the skills and knowledge to help service users with a personality disorder. Carers thought that people were diagnosed with personality disorder once they had not responded to traditional treatment, rather than receiving a diagnosis based on symptoms. Some carers felt that being given the diagnosis had been helpful; however, they felt that because of the stigma associated with the disorder, professionals were reluctant to give a diagnosis of personality disorder for fear that their clients would be treated differently. Carers also reported that the diagnosis ‘attracted less sympathy’ than a diagnosis of severe mental illness. With regard to stigma, carers felt that overall they could talk to their friends and neighbours about the difficulties associated with personality disorder, but that the stigma came from the professionals not wanting to work with service users with the diagnosis. There was a strong suggestion that training for staff (and carers) should be developed to address this issue. Carers were confident that they had much to offer to professionals and that education of staff should include specific content on the needs of carers, with carers being involved in the training. There was a recognition that personality disorder did not ‘sit comfortably’ within the healthcare system, and that such training could help to address this problem.
4.5.3 Carers’ experience of staff, confidentiality and access to information
Carers felt that professionals often did not see beyond the service user and that staff were not always sympathetic to their needs. Carers reported considerable anger at having to care for family members to the point of hospitalisation, and then not to be given any information about the person’s condition in hospital. GPs were felt by carers to be an important entry point to gain information. People felt that even having a poster in their GP’s surgery would be useful as this would either make them think about talking to the GP regarding their responsibility of caring for someone with personality disorder, or would encourage them to ask the GP about support services. Where agencies were involved, carers felt that poor inter-agency communications were the norm. Their experience was that professionals had limited knowledge of other services. The carer often felt that they knew more about the bigger picture than any single agency or professional but that their expertise and knowledge were disregarded.
4.5.4 Support
Carers felt that time and direct support for them was important to help them cope. They typically reported feeling very isolated, and though they acknowledged various carer support groups, many felt that they had not been given any support to understand
the diagnosis of personality disorder. Carers expressed that they wanted access to carers’ networks or self-help and support groups so that they could learn from other people with similar experiences and also share good practice. Parents of people with personality disorder were often left feeling to blame for their child’s problems. One carer expressed that: ‘I need reassurance. I feel that somehow I have let my child
down, what could I have done differently, what can I do with these feelings?’ Carers
also felt that more work needed to be done around early intervention and that the issue of parents with a personality disorder required further attention
4.5.5 Summary of carer experience
Carers of people with antisocial personality disorder often bear the major burden of care. The nature of the antisocial and offending behaviour often associated with the disorder may mean that carers are treated unsympathetically, although they them- selves may have considerable needs as a result of the behaviour of their family member. Carers are keen to be involved to gain more information and to build collab- orative relationships with health and social care professionals. Families have the same rights to support and containment as other families caring for a person with a signif- icant mental health problem.
4.5.6 Recommendations Involving families and carers
4.5.6.1 Ask directly whether the person with antisocial personality disorder wants their family or carers to be involved in their care, and, subject to the person’s consent and rights to confidentiality:
l encourage families or carers to be involved
l ensure that the involvement of families or carers does not lead to a withdrawal of, or lack of access to, services
l inform families or carers about local support groups for families or carers.
4.5.6.2 Consider the needs of families and carers of people with antisocial person- ality disorder and pay particular attention to the:
l impact of antisocial and offending behaviours on the family l consequences of significant drug or alcohol misuse
l needs of and risks to any children in the family and the safeguarding of their interests.