The challenges faced by those caring for and living with adolescents with severe and complex mental health issues cannot be overlooked. They are significant and those affected are people of as much value and worth as the young people whose health they themselves are so focussed on. So parents/carers and family members must have the best support not only so that they are able to sustain and facilitate the treatment, education and rehabilitation of the young person, but because they too are individuals who deserve the best lives possible and whose suffering must be minimised wherever it can be.
The Barrett Adolescent Centre closure and all that followed will continue to bring to light what carers of young people with severe and complex mental health issues must endure. This goes far beyond the trauma of the 24 hr existence with a loved one who is dealing with a combination of issues that could include developmental trauma, major/multiple psychiatric disorders, high and fluctuating risk to self, major and pervasive functional disability, learning disabilities and drug/alcohol misuse – although that is a significant burden. Unfortunately, though, the difficulties also encompass the complications and struggles involved in finding treatment that will lead to significant progress, the impediments of the constraints of the system and, added to those, the sometimes unjust assessment and/or pre-judgement of their own role/character by those in professional roles.
Some parents/carers experience being disregarded, others feel judged and many contend with being misunderstood.
Sadly, there are too many stories from parents/carers where earnest desperation after years of living with a child whose existence has become increasingly more torturous is misread – for the most part, by those with good intentions. Those with theoretical knowledge are required by their position to attempt to assign roles and diagnoses and do so with the motivation to provide clarity to a complex situation in order to facilitate the right kind of treatment. But describing a parent/carer whose life has been shaped by years of trauma and futile searching for support as “demanding“, “unreasonable“, “overprotective“, “misguided“, “overly dramatic” or even categorising them as “dysfunctional” or exhibiting traits attributed to adverse character types or labels (e.g. having a “victim mentality“) all based on only cursory interaction/evidence makes the challenges that parent/carer faces even greater.
Although clearly there are situations where a parent/carer’s behaviour can impact negatively on the young person or their treatment, there are too many cases where emotion from extreme stress/disappointment displayed by a carer is misread and potentially valuable input is dismissed. Every participant in the search for effective support – the young person themselves, the parent/carer, the potential service provider, the clinician etc. – encounters difficulties within their role when the mental health issues are severe, complex and pervasive. So, wherever possible, each person must be as valued and understood well as possible for their own sakes as well as to achieve the best outcomes for the health of the adolescent.
Some parents/carers encounter legal issues or bureaucratic challenges that can hamper their ability to provide the best support to the young person in their care.
When young people become 18 years old, in the eyes of the law they are an adult. They have the right to privacy of an adult and therefore, their parent/carer cannot access any information about them or their healthcare unless the young person grants that access. However, if that young person has impaired thinking or has experienced developmental delays as a result of his/her mental health issues, he/she is unable to function as a self-sufficient adult. And if they are, as most teenagers are, trying to navigate the balance between childhood dependence and adult independence by asserting the latter, they can often refuse to provide their parent/carer with any information. So a carer is expected to care for someone without knowing what treatment sessions they should be attending, what skills they’re working to develop, what topics of discussion or behaviours may be problematic etc. This places the parent/carer in a minefield and there are too many negative outcomes that can come from such a potentially volatile situation. But still, the legal rights of an adult are just and must be maintained. So … the complexity of attempts to ensure lasting positive progress in the health of young people dealing with multiple issues of severity becomes even more problematic. This kind of challenge is not isolated so there needs to be recognition of this barrier and strategies in place to incorporate carers into the treatment plan and/or provide them with strategies to appropriately support the young person for whom they have undertaken primary responsibility, particularly when the right, consistent support for someone with severe and complex issues is so vital. Although this issue is addressed in the National Mental Health Standards, the practical implementation currently often falls well short of what should be in place to achieve objectives in the best interests of the young person AND the carer. So facilitating the informed collaboration of all involved in the care within the boundaries of the rights of each individual and of the law should be prioritised in every situation.
The challenges that parents/carers and families of young people with severe and complex mental health issues are too many, too debilitating, too frequent.* Support must be provided and understanding must be paramount.
It is hoped that the proliferation of information and the growth of support mechanisms for parents/carers will lead to greater understanding and more positive and productive relationships, guidelines and systems as progress in dealing with severe and complex adolescent mental health issues moves forward. This ‘Carers / Families’ section of severeyouthmentalhealth.org aims to indicate some of the ongoing challenges that people in this position face – each situation is different but all require greater understanding and support from the wider community as well as from those tasked with providing services. The hope is always that the best support will be provided to lighten the load of families and young people affected by severe and complex mental health issues.
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* An email sent to signatories of the CommunityRun petition to ‘Save the Barrett Adolescent Centre’ during the 2015/16 Commission of Inquiry into the Closure describes the Barrett families and their challenges – click left to read