This post originally appeared on Firefly Community and you can find the original here
Christmas this year was a bit of a wash out.
In the seven-week run up, our house had become a breeding ground for all kind of viruses.
All of us (bar Pearl) had flu, colds, infections and stomach bugs, with hardly a day off in between.
I couldn’t exercise and found (who knew?) that if you eat more than usual, while doing precisely nothing your clothes inexplicably shrink.
It was with some relief that January and better health rolled round. The first hospital appointment of the year, on the second of January, seemed like a return to normality.
As Pearl grows older it seems likely that she has a degree of ASD in with the mix of physical, cognitive and sensory problems. She is very routine dependent and her understanding is very experienced based.
Reason 1: Years ago I came across an article by a priest working in South America. It was called “Taking Sides”. He challenged the widely held belief that any problem could be resolved by bringing together the two parties with different beliefs or ideologies to discuss the matter. He pointed out that this was far too simplistic. In some situations, it was simply impossible.
In unjust situations, where one side holds all the power over the other there can never be an equal dialogue.
Faced with such a situation you have to decide for yourself who is right and who is wrong, then be very, very brave.
Sometimes you have to take sides.
Reason 2: Another time, watching a World War 2 documentary, I was suddenly shocked into attention by the image on the screen. The scene showed an architect’s office and, on a drawing board, the meticulous plans for an intricate building. The plans were for Auschwitz and the designs were for the gas chambers.
Somehow it was more chilling than the dreadful images of the death camps themselves. This cultured man, an exemplary model of a conscientious architect, taking up his pencil and his slide rule and, with every attention to detail, calmly calculating the measurements necessary to achieve the greatest efficiency in destroying his fellow human beings.
Sometimes the worst monsters are sitting in impressive offices.
Reason3: I learnt another lesson from the example of Sister Elizabeth Kenny the pioneering Australian who transformed the treatment of polio victims in the 1930s and 40s.
Ridiculed, looked down upon and obstructed by the medical establishment at every turn, she steadfastly fought on, in defiance of the accepted wisdom, to demonstrate that her approach was the most effective method of aiding the recovery of her child patients. Starting with only the grass roots support from parents and patients, then gradually winning over a few other professionals who paid serious attention to her evidence, she eventually succeeded in revolutionising practice and transforming the lives of polio victims.
In the end, if you have the strength to keep going, a commitment to what is right, and a stalwart cohort of fellow fighters, you can win through
These are three reasons why I became Wisegrannie and joined the blogging universe – just one old person hanging on in there, still loving life and telling stories to feed the spirit. In my own small way joining the fight against the monsters living in the forests of an unequal world.
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.
Well now. Much has been written about Mazars report into Southern Health’s failings. The anguish and eloquent anger of LB’s family has touched me greatly. Their poise and determination in the face of brutal onslaughts is amazing.
In the last 20 years as a social worker I have seen brilliant practice. I have seen appalling practice. I have seen lives transformed. I have seen lives destroyed. Over the last few months I have had particular cause to reflect on what it is that determines how people are treated by organisations.
That’s it. Pure and simple. Culture dictates attitude. Attitude dictates quality of service. Culture is determined by leadership. Large health organisations and social services departments are top-down organisations. Hierarchical wilderbeasts, stampeding in discombobulating circles at the whim of their political drivers.
Such frenzied behaviour is destroying services. It is ruining lives. Its prime focus is on the survival…
It was Grenouille’s school Christmas Concert yesterday. Always an utterly fab event. The school has a very strong music department and runs an orchestra and two choirs. G, love and bless, can’t carry a tune in a bucket, or remember all the words of a song in the correct sequence, but has been an enthusiastic and assiduous member of the choir from the word go. The wonderful music teacher has given nothing but encouragement and praise for every effort, and has done wonders for G’s confidence and willingness to join in.
Attending the concert this year was tricky. G had a healthcare monitoring appointment after school, so the afternoon schedule went: leave school; be driven along 10 miles of Rural Road to meet me at Healthcare Facility; get through (longish) appointment; go home; have early dinner; be driven back along 10 miles of Rural Road to Concert Venue in Schooltown; and…