One day, idling around Facebook, I came across the story of LB, the Laughing Boy who grew up into a handsome teenager and drowned in a bath at a National Health Unit, where he was temporarily staying for assessment of his needs.
Even somebody like me, with no specialist knowledge, could see this was wrong. My heart went out to the family. I wanted to support them in finding out the truth of exactly how and why their beloved healthy son could possibly have died in this way at 18 years old.
I was able to help because LB’s family and friends organised a do-it-yourself, hands-on, make-it-up-as-you -go-along, online campaign. This highlighted the struggle of an ordinary family to get help for a son who needed a different kind of care from his brothers and sister, especially as he became an adult.
He wasn’t ill. He simply had two conditions that could perfectly well be lived with. He was autistic and he had a form of epilepsy. Neither should have killed him.
Yet the Health Trust responsible for his care said he died of “Natural Causes”
This was a lie. The online campaign (Justice for LB) raised £26,000 to pay for legal representation for the family and after two long years an inquest jury agreed that it was a lie. They said Laughing Boy died because of neglect in National Health Service care.
Not only that. His campaign uncovered that there had been many, many other deaths, which had never been investigated. National Health Service (NHS) procedures made it almost impossible for families ever to find out the truth about how their sons and daughters had come to die in National Health care, years before their time.
Health professionals who tried to tell the truth about NH services were called “Whistleblowers” and were gagged and/or driven out of their jobs. Family members who persisted in protesting about poor care were victimised, harassed and even forced to leave their homes. They lost their life savings in legal costs, attempting to uncover the truth.
Many families had just wanted to be able to care for their children, even when they became adults, at home. Why couldn’t they?
Because the organisation of the care system in the UK made it well-nigh impossible for them. The support they needed wasn’t there. It was a long, complicated battle to get their children’s needs acknowledged and to find funding. Procedures were confusing, over-complicated, constantly changing and poorly understood, even by those administering them.
Any provision of care was patchy and inflexible. Your son or daughter had to fit in with whatever was available wherever you happened to live. Parents and siblings became ill and grew old. They became poor, because they couldn’t work at the same time as caring full-time for a family member.
The whole UK care system became a clunky mess.
This is the situation today.
This is what we campaign to change.
The challenge is to get lots of people actively involved in making good changes happen.