Ashya King - Protection or Prejudice?

Gill from "Sometimes it's Peaceful" wrote an excellent post about Parental Rights and Education here and I urge you to read it, particularly if you are still under the illusion that there is no Big Brother, he is not watching you and your family home is your castle.... 

As parents we came alarmingly close to losing key parental rights under the last government - and no one batted an eyelid. The last Government brought in "Every Child Matters", Children's Centres and the biggest amount of Red Tape ever seen. The drive to see Education, and even Childcare as a Science is still to be dropped by the current government, despite many critics pointing out the obvious for several years. 

We are losing the ability to trust our human instinct and intuition at an alarming rate in this country, as mothers, carers and professionals have to justify and quantify their every action.

So before another government seeks to further erode parental rights parents it's worth pointing out that English parents actually have fewer Statutory Rights in Family Courts than criminals in the Crown Courts. But of course, we needn't worry about that as we are not child abusers, right? WRONG. The impact of losing parental rights will be felt rippling throughout society, at every level and every turn.

The media thrives on appalling events such as the death of Victoria Climbie, Baby P and now the story of Ashya King and seeks to (bizarrely) work with the public bodies they usually challenge to hand them a Fait Accompli - a "Perfect Storm", a public whipped up in a frenzy of misunderstanding layered on ignorance which then willingly hands over individual and family rights for their "protection", and the protection of their own children.

But what on earth makes parents, voters and the public suddenly regain this exalted view of politicians, public officials and institutions? Where does the usual healthy dose of scepticism vanish to? Are we so naive that when it comes to our children we believe everything we are told?

Whatever the truth about Aysha King, don't let the media convince you that this is anything other than  an attempt to once again erode parental rights. His parents are currently in a Spanish prison - charged with nothing, whilst their eldest son is forbidden to visit his brother. Just whom is concerned about the child's welfare now?

Like many of my friends we have travelled with a child on a similar enteral feed. It's not rocket science, and it's worth pointing out that should there be a problem with the feed, pump or supplies no hospital is likely to be remotely interested. Those issues are offloaded onto the supply company you deal with direct.

Whilst the NHS is indeed a marvellous thing, it is also a dinosaur wading through treacle, without the funding to build it a bridge with a meteor hurtling towards it through the atmosphere. Clinic letters are frequently typed abroad, in our case in India and when the Indian typist Googled our town he addressed all our letters to a similarly named hospital in Australia. Errors abound, dangerous medication errors, gender errors, clear cut and paste errors from other letters - even letters about someone else's child turn up on your doorstep. Communication between hospitals is at best precarious, at worst non-existent and one local Consultant has told me himself the quickest way to shorten a waiting list is to bin a handful of appointment cards. It happens.

So why the indignation when parents, who do actually know their child BEST stand up to doctors whose primary concern is (being brutally honest) their jobs, salaries, careers and their research? Doctors who with the best will in the world are overstretched, underresourced and often get patients confused, forget patients' names and histories - it happens ALL the time.

An interesting study in the BMJ 14th November 2013 posed the question "What Happens if Parents Know more then their Doctors?" The principal findings make for uncomfortable reading:-

People graduating from intensive patient education courses such as DAFNE emerge with disease-specific biomedical, experiential and practical knowledge that exceeds that of many healthcare professionals. From the stories told by participants in this study, it was clear that serious obstacles to self-management arose when generalist and even specialist doctors and nurses were not comfortable with patients who had a high level of expertise.

Because it happens. Sometimes patients, and their families do indeed gain a considerable amount of specialist knowledge in the area their family is affected by. And until this is acknowledged and accepted by the medical profession, and the majority - instead of the minority - work WITH families, there will be more Ashya Kings.

Knowledge, and difference are a dangerous combination in a world which seeks homogeneity, and our attempts to deal with difference seem to require persistent analysis and quantification.

Four years ago I wrote about the Children and Families Bill, dreamt up by the previous Labour  government in the wake of the Victoria Climbie investigation. The CSF Bill was dropped due in part to pressure from Home Educators who not only objected to State interference in their right to educate their children as they saw fit but also pointed out the obvious - that a HE child is no more or less "at risk" than any other school educated child, all of whom have long periods of time at home.

The unfortunate Khyra Ishak was indeed deregistered from mainstream schooling but was not, by any stretch of the imagination Home Educated. But suspicion is the child of ignorance and choosing a path for your family which is in any way different from the vast majority should not leave you open to prejudice. Back then Ed Balls stated he fully intended to "provide proper protection to home educated children" if Labour were re-elected. No doubt he would be playing on issues of difference, focussing on Prejudice rather than "Protection" now.

There is a veritable industry that exists to "safeguard children" now which must therefore justify its existence on a daily basis. So deep is the desire to prove themselves at every level this "protection" system is trapped looking for cases and fitting individuals into their preconceived moulds. There is no room for uniqueness, for unorthodoxy, God forbid you do not choose to or are unable to tend towards the mean. This offers up a perfect opportunity to convert misunderstanding into accusation.

This is a constant battle fought by parents of disabled and chronically ill children, particularly those with invisible disabilities. So vast and complicated is the framework in which support is or is not available that if there is not an immediately visible, convenient niche in which to slot your family (either inside or outside that framework) then you invite suspicion and intervention.

Instead of training health professionals, social workers and other front line workers to respond to individuals on a case-by-case basis we are trapped in a system where government frameworks and policies constrain free, rational thinking and financial accountability has been stretched to require self justification at every level.

It seems we have learned little and increasingly offer ourselves up to be judged by supporting continued and increasing State intervention in our lives. Without individuals and individual ways of living we might just as well enter a Brave New World and admit defeat of the very essence of being human.