By Rosie and Jo’s mum.
I’ve been watching the distressing case of Charlie Gard unfold for the last few months and, apart from the obvious, something has stood out for me that I imagine only other parents who have been in battles for SEND provision for their children will have noticed.
The staff at GOSH have behaved exactly how we should expect professionals in positions of responsibility for the well-being of children to behave:
Reading the court reports and transcripts and the statements released by the hospital has painted for me a picture of respect for the the child, the parents and the legal processes on the hospital’s behalf that should be an example to all.
The hospital staff worked tirelessly for many months to find some common ground with these parents and make sure that they felt listened to. Of their own volition, they called in multiple experts from around the country to offer advice to ensure that they had made the right decisions based on the best information available.
When there was an opportunity to hand the child’s care over to other medical professionals and save themselves a huge amount of money, the hospital placed their responsibility to the child over their budgets.
At every stage, the hospital staff maintained the highest standards of ethics and behaviour. The information they shared with the courts and the media was always truthful, measured and as kind as possible in order to minimise the distress of the parents.
Right until the very end, they tried to work with the parents and resisted only when their wishes were clearly in conflict with the best interests of their child.
Not once did they falsify evidence, deliberately cause additional distress to the parents who were already in turmoil, withhold information that may have been useful to the parents, put pressure on professionals not to give evidence that would support the parents or try to subvert the court processes to prejudice the parents’ case. They remained polite, courteous and supportive to the parents throughout the process and did not allow the fact that there was a legal battle in process to undermine the quality of the care they offered to the baby and his family.
As the case went on, my admiration for GOSH staff grew but for a rather depressing reason. I found it refreshing to watch how they conducted themselves with such integrity but I also began to feel gradually more and more angry that parents cannot expect similarly high standards of behaviour from school and local authority staff when fighting for their children’s right to equality of access to an education.
I entered the SEND world fully expecting the education professionals involved with my children to act in their best interests and with honesty and integrity, just as I would of the staff were my child admitted to GOSH. I was wrong. I, eventually, reluctantly concluded that this is not a reasonable expectation to hold; that lying, both by omission and directly are common practice amongst professionals in the SEND world is commonplace. Indeed, it seems to be fully expected, even by tribunal judges.
I have personal experience of and hear regularly of other parents being abused throughout the tribunal appeal process by LAs ignoring evidence deadlines, falsifying evidence, lying to the tribunal, threatening professionals from other agencies to prevent them from providing evidence, playing mind games to destabilise parents, refusing to support children while the appeal is under way and deliberately withholding evidence to prevent parents from having the opportunity to respond. I also, sadly hear very little about LAs being sanctioned by the courts for this behaviour or even asked to explain their unacceptable behaviour by the tribunal judges. It all seems to be considered water under the bridge once the hearing begins and LAs take full advantage of this.
The NHS is no less strapped for cash than local authorities and there seems to be little excuse for this behaviour, other than it just being the culture that schools and SEN departments have been immersed in for so long that they no longer know how to behave any differently.
I would like to call on local authority SEND leads, council officials and tribunal judges to look again at how GOSH conducted themselves throughout this case and measure the behaviour of LAs in SEND tribunals and other interactions with parents against it. I am quite certain they will be found wanting.
Perhaps part of this little boy’s legacy could be that parents of children with SEND could begin to expect education and LA professionals to behave with the same honesty and integrity as they can already expect from NHS staff and that those new to the system never need find out the hard way that the rules change in a most unpleasant way once your child is identified as having special educational needs.