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Kirsten's Story
There is always more to a story than we hear if we view it through a singular lens. That is the point of this Living Library series. It provides the opportunity to hear stories from an unfamiliar perspective. Often people's stories are told through case notes and professional narratives. This is Kirsten’s story. Her view of her life as Tom’s mum and her observations on the health and social care system that is meant to be there to support them both. Kirsten talks with candour about the difference receiving support from a small supports organisation has made and why ultimately, it did not prevail.
Small support organisations help individuals and families navigate the health and social care system by placing their will and preferences at the heart of all thinking, planning and activity.
Small supports organisations are not a panacea.
Being Seen and Being Heard
Kirsten talks about the difference it made to her, and to Tom, being listened to by someone who was interested to learn more about them, from them.
Not just from case files and notes, but from them as individual people and together in their relationship as a mother and son. It made such a difference that someone was interested in their thoughts and took time to understand how they got to where they were. Kirsten recognised the transformational effect of a person respectfully offering the space and time for her and Tom to recognise the trauma they had experienced. Through this they could develop a better understanding future might look like.
Mother's Love
Being seen and listened to helped Kirsten recognise that love was not enough to keep her and Tom safe; And that families need support that works for them, through all life’s complexities, and that adapts and changes as their lives change.
An Opportunity For A Positive Future
Kirsten spoke about feeling overwhelmed with mixed emotions. Knowing that Tom would not be coming home and trying to look at the potential positives for him beginning to lead his adult life. At the same time, worrying about what that the future might hold.
The Art Of The Possible
Kirsten felt that Tom’s ‘hefty reputation’ put many professionals and providers off working with him. Fortunately, a word-of-mouth recommendation led to a discussion with a small supports provider, Orbis, who saw past the reputation to the person. Orbis agreed to work with Tom and Kirsten.
Going To Bat For Me
Immediately Kirsten felt the difference having Orbis working alongside her and Tom. It gave her greater confidence to challenge when she did not feel that her views were being listened to. She felt that she had the backing of an organisation that would go the extra mile to do what needed to be done for Tom’s good life to begin to take shape.
Believing In People
Despite suggestions that Tom should have people supporting him all the time, those who knew him well knew he would not cope with that for long. The support was designed to adapt to what Tom needed. Initially he needed to know he would be listened to and that his support team would not be ‘in his face.’
What Made The Difference
Kirsten was clear that what made the difference was being treated as a human being, with dignity and respect. Not ‘othered,’ as a collection of issues and problems to be managed.
She spoke of the dehumanising way that she and Tom perceived professionals who engaged with them, as though they were ‘handling something.’
Kirsten stated that perceived need to appear professional seemed to override human and relational approach. This placed barriers between her and Tom, and those charged with helping them.
Not Only Other, But Less Than
Article 1 UN Convention on Human Rights states,
‘All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood.’
Kirsten did not feel equal in dignity and rights. She felt that she had to become other than herself, to comply and fit into the system. To make ‘the system’ work in any way for her and for her son she had to ‘subsume’ herself and ‘say things they (the professionals) want to hear.’
She experienced this as a form of ‘othering,’ which was both ‘humiliating and incredibly frustrating.’
Reputations Following You
Kirsten's view was that even though you are offered support that makes no sense and will not help, that somehow you should be grateful you're getting anything at all.
A Health And Social Care System That Is Failing People
Families are left with the trauma and the guilt compounded by a system that fails to recognise that it is more humane, and more cost effective, to design supports around a person, rather than require them to fit in, when they cannot.
Why Did The Support From Orbis Stop?
Why does our duty to care for each other as fellow citizens stop when we become adults?
Particularly for those who have been ‘cared for’ by the state.
Kirsten recognised the biggest difference between ‘child services, and adult services, is that adult services will just walk away.’ If he (Tom) disengages, ‘they will not follow up, they won’t check’ he is ok.
A Sense Of Free Fall With No Parachute
What is our duty to people who do not easily fit the system as it is structured?
Do we have a commitment to individuals to do what it takes, in the long term, to help them live their best life?
We can argue the economic case. Many people like Tom may not be a cost to the social care budget if they disengage. But they do show up elsewhere in the system, through costly interventions by the police, fire, ambulance service, in the prison system or housing. Or sometimes through emergency health admission and out of area placements.
Alongside the economic argument there is a compelling moral obligation to be, and do, better than this.
Kirsten’s story of her experience with her son Tom illustrates the limitations of Small Supports organisations in an inflexible health and social care system that does not take a lifelong view. Small Supports organisations operate within systems designed not to meet people's needs in the way they live their life but instead, are structured around arbitrary categories, children’s services, transitions, adult services, diagnostic criteria, eligibility criteria. And, if a person does not neatly fit these boxes, or is unwilling or unable to distort and contort themselves to fit, then they will find themselves either incarcerated or excluded from the support they need. And those who love them, families, unpaid carers are also victims of a dysfunctional system. As Kirsten so eloquently stated live ‘my life is just waiting for the phone call. And I feel as a mother that I have totally failed.’
Families take on a burden of responsibility that is too great to carry when it is our health and social care system that has failed both them and their loved ones.
It is possible to do better and small supports organisations can be part of the solution but only when we measure success through human flourishing as well as budgetary implications.
Audio transcript can be found here:
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