I sat around a meeting with four professionals sitting in a semi-circle around me. “I will not let you fail my daughter.” I repeated “I will NOT let you fail my daughter”.
And we went around in circles. “We are not asking you anything that is beyond reasonable expectation of parental care”. “We will want everyone to be properly trained in long term , we would just like you to accommodate the training process”. “How is it different from you having to be alone responsible for Freya’s safety when carers are not there?”. “We would not want you to communicate your concerns directly to agency”.
The above are direct quotes from employees of Haringey CCG trying to guilt trip me into accepting carers who would not been fully trained to perform CPR on my medically complex tracheostomy child. Staff, who would be under express instructions not to change Freya’s tracheostomy tube, even if they were the only person able and even if she was suffocating in front of them.
The reasonable expectation of parental care they refer to basically means I’d have to be 24/7 readiness to jump into action and take full sole responsibility for dealing with significant portion of Freya’s care in a life/death situations. I can be reasonable and I can accommodate, but that is not my unreasonableness why we find ourselves here; We are in this situation because Haringey CCG has failed to commission any training since the issue first arose five months ago – a period in which the training would have largely been safely and properly completed. (And yes, for those who wonder about the last quote, that was a direct attempt by a government official telling me who I should, or shouldn’t speak to.)
I felt a sharp sting of fear and anxiety inside me. The scenarios we were talking about were not merely hypothetical. Just days ago both Freya and I had been struck down by a nasty vomiting bug. We were lucky. Freya did not require emergency intervention and I could vomit in peace knowing that the nurse looking after her could deal with one if it arose. Where the interventions a child like Freya requires are not on the curriculum of study for emergency ambulance crews or nurses and doctors at A&E I cannot but wonder – do you we really want to put the almighty buck before the safety of those who are the most vulnerable in our society – little disabled kids like Freya?
On the drive back from the meeting a poem came into my mind, “I am a nasty woman” by Nina Donovan. Donovan wrote the poem after watching a presidential debate on television where Trump called Hilary Clinton just that – “a nasty woman”. The poem essentially describes living an environment where outspoken women pointing out injustices routinely get referred to as “nasty women” (or worse) and these women, in turn, standing up and saying fine, if doing what I do is nasty then be it. Even though written in a different context, the spirit of the poem struck a chord with me.
I am a nasty woman. I am a nasty woman who refused to discharge her dying baby without provision of help at home. I am a nasty woman, who following a conversation with a consultant who said her daughter should not be allowed a home ventilator in light of her poor prognosis and high cost in treatment, wrote a memorandum to all her treating doctors asking what was the alternative, telling they would be failing their duty of care if they would discharge her with no proper plan of care. I am a nasty woman who demanded safe home for my daughter and geared up for a legal battle when Homes for Haringey refused to follow their own OT’s advice to rehouse us urgently. I am a nasty woman, who demands that care staff looking after her daughter do not sleep on shift. I am a nasty woman who asks for the staff looking after her daughter to be properly trained in accordance with the clinical advice of those treating her. I am a nasty woman who refuses to bullied into accepting lesser standards, however many times she is told she is a bad mother for doing so.
What’s made me so nasty? Maybe I always was nasty, maybe it is in my blood. The injustices I witness make me nasty. It may be the company I keep – I know a lot of nasty women (and a lot of nasty men too!) the kind Donovan describes in her poem. In fact, most of us, members of the club of parents of special kids, are a nasty lot. But we are not as nasty as ever increasing cuts to services leaving families like ours unsupported and alone. We are not as nasty as bureaucrats keeping children in hospital because they refuse to meet their legal obligations. We are not as nasty as money saving antics risking our children’s lives. And we definitely are not as nasty as unnecessary and avoidable deaths of children like ours.
So I accept it, I am proud of it, I AM a nasty woman. And I salute those out there, who like me, face another day being called nasty, whether it is said to our faces or behind our backs, whether it is disguised in politer words or said outright in harsher terms. Keep up the good fight – and maybe one day we can effect real change.
P.s. if you want to check out Nina Donovan’s poem you can do so here: https://www.youtube.com/watch?v=Sakqas5J4I4