Over the past couple of days there has been a huge furore in the media about the King family who "went on the run" with their five year old son Ashya King, who has a brain tumour. When the news first came out, the bias fell heavily on the side of Southampton General Hospital, painting a sketchy picture of neglectful parents, who had possibly lost the plot versus the "concerned" authorities who only had "the best interests of the child" at heart. Despite the best efforts of the press to vilify the parents, I didn't buy it for a minute, and my heart immediately went out to the family.
Why? Because, as the mother of a severely disabled child, I know first hand how parents of sick and disabled children can be bullied and pressurized by health professionals, and are often vilified and criminalised, just by virtue of having what is known to the system as a "vulnerable child". If you dare to criticise those in authority or have an opinion that is different from them , then you are considered a risk to your own child. That's because these is a huge flaw in the health and social care system. You see, as far as the authorities are concerned, a vulnerable child is a vulnerable child. They don't actually care why a child is vulnerable, they are all treated the same. One child could be vulnerable because his parents are drug addicts, while another could be considered vulnerable because she has a mother with serious mental health issues and a history of abuse and neglect. The problem is that if you are unlucky enough to have a child who has complex medical needs, your child is seen by the system as a vulnerable child, just the same as the other two children. The system doesn't seem to ask why each child is vulnerable, and take that into account. It treats them all the same. As far as the system is concerned, a vulnerable child is one who needs protecting from his or her own parents!
I have experienced this first hand with my own situation. When my child was born severely disabled, it was through no fault of my own, and was actually because of mistakes made by medical and emergency staff. I asked for a social worker to help me to organise the things I would need for my child. Eventually I was given a social worker from a local maternity unit, who specialised in working with drug addicts whose babies had been born addicted to drugs. She knew nothing about how to help me organise the things I needed to face life at home with a severely disabled child, and did very little to help me. It took two years for her to pass my case over to a different department, which then placed me on a six month waiting list before I could be seen. More recently I remember my child's school sending out an application form that had been given to them by a local charity which was connected to social services. It owned a couple of caravans in a holiday park and was offering free holidays to qualifying families who had a "vulnerable child". As I looked through the form it seemed quite straightforward to fill in, but when I got to the end of it there was a part which had to be signed at school by a teacher who knew the family. The teacher had to sign the form to confirm that the parents were not likely to be abusing alcohol or drugs while in their caravan. I found it incredibly insulting to think that this charity had handed out these forms to a special needs school, where all the children are loved and well cared for. and needless to say, I didn't bother applying! But it all goes back to that tag - the charity's remit was to provide caravan holidays for "vulnerable children", so this was a form which had also been designed to be filled out by families with substance abuse problems or mental health issues - families who had children who were seen to be at risk from their parents.
So how did this happen? How did sick and disabled children, whose families and parents are often ten times more devoted, loving and committed to their children, ( They have to be, its their job to be there for their child under incredibly difficult circumstances, often without proper amounts of food and sleep. It is often left to the parents to keep their child alive, and many of these children would not live if it weren't for the tremendous devotion of their parents.) end up being lumped in with children whose parents are often at the opposite end of the scale, who are in genuine danger of not being cared for properly? Unfortunately, I don't know the answer to this question, and I would like to make it clear that I am not judging those parents or families whose children are considered vulnerable due to other issues such as drug abuse. The point is, parents of sick and disabled children should not be treated as though they are a potential threat to their children.
The case of the King family clearly shows how flawed this system is and the devastating effects it can have on an innocent family. Brett King has spoken about how he felt threatened, that if he questioned the doctors or argued with them about his son's treatment they were going to place an emergency protection order on his child! This pushed the King family to feel like they had no option but to leave the country in order to stay with their child and get him the best treatment. Although I have never been unlucky enough to have been in the impossible situation the King s were faced with, I know only too well the underlying threat that hangs over the heads of parents of children with complex medical needs. I have often "toed the line, bitten my tongue and played the game", in order to avoid being seen as a potential threat to my child. When it comes to serious issues which affect my child, I always fight the good fight, and this has made me an object of suspicion in the eyes of the authorities, but when it comes to the day to day small stuff I often find myself agreeing to things I don't really want to, because I don't want to be seen as a threat to my child. As the parent of a special needs child, its always there, hanging over your head. I go along with the home visits, even though I find them unbearably intrusive. I feel I have to because if I don't, I worry that the health care professionals will think that I am trying to hide something. I'm not, I just happen to be a normal busy parent who wants a peaceful family life, and has better things to do with her time than clean up the living room so that a bunch of strangers can traipse in and ask a lot of personal, repetitive and often mundane questions, so they can tick their boxes, and say that they've done their jobs. I also happen to be an extremely private person, so home visits are for me, particularly unpleasant and intrusive, but I am aware that I have to choose my battles wisely, so I go along with it.
The way that the hospital handled the Kings' situation is the stuff of nightmares. They deliberately overplayed the possible danger that Ashya was in and turned the family into criminals on the run. The original news article which I read mentioned concerns the hospital staff had (they were probably "grave") over the parents' ability to use the feeding pump. The hospital staff would have been fully aware of how easy the feeding pump was to use and maintain, I know because my son uses the same one as Ashya King! And guess what? If you know how to plug in a mobile phone, you would be able to work this feeding pump! This makes me seriously question the integrity of the hospital. Most members of the general public and even the police will not know much about feeding pumps unless they have been involved in caring for someone who uses one. So, for the majority of the public, all this "technical talk" of feeding pumps which are going to run out of charge and break down, could sound like a convincing reason for the authorities to press the panic button. It probably helped to convince the police to become involved, and had the added benefit of painting a picture of the family in the media as reckless and irresponsible.
Fortunately for the Kings. common decency and sense has prevailed and they have been released. They will now be free to go to their son Ashya's bedside, where they should have been all along. Although this is marvellous news, lasting damage has been done to this family. The fact remains that a very sick little five year old boy was left alone without his parents for days. What must he have been going through? What must his parent's have been going through? And apparently this was all in the name of what was "in the best interests of the child". The story is not over yet, but it has raised a lot of crucial questions about the treatment of parents who have a sick child. I truly hope some good will come out of the horrendous suffering that the King family had to endure, and their story has a happy ending. I also hope that those involved will be held accountable for what they have done, and that health and social care services will learn from their mistakes and change the way they treat innocent parents of sick children so that this never happens again.
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