Well LB was a bit older than you. He was very funny, loving and loved buses and Eddie Stobart lorries. He got upset and a bit low when he was 18 and ended up in hospital. It was a special sort of hospital. It cost more money each week for LB to stay in that hospital than most people earn in a month. It was run by a bit of the NHS called Sloven. The NHS is supposed to look after everyone in this country when they are unwell.
It turned out that Sloven didn’t really care about patients like LB. Or care about some of their staff. Staff became fed up and some became pretty rubbish at their jobs because of this. They stopped looking after patients properly. LB had a thing called epilepsy which meant he could suddenly pass out. Staff knew this but the doctor in charge told them it wasn’t a problem.
One day LB was in the bath alone (which he shouldn’t have been) and passed out. He went under the water and died. We felt our world had ended. Sloven pretended LB would have died anyway. They said he died of natural causes. But people don’t usually die in the bath (or when they are 18). Instead of being able to feel sad and think about our beautiful boy we had to fight to get Sloven to admit LB died because they didn’t look after him properly.
Sloven refused to do this and the people, like NHS England or Monitor, who were supposed to make sure Sloven did the right thing didn’t. Nobody who should have sorted this out, did anything. Usually when you work you have a boss who makes sure you do your job properly. And your boss has a boss. It turns out, in the NHS, the bosses of bits of it can do whatever they want. The Sloven boss, called Katrina Percy, and her senior team just carried on behaving badly.
We were worried some other people might have died because they weren’t cared for properly like LB. The boss of NHS England agreed to pay for a review into other deaths that happened in Sloven’s care.
Meanwhile, a lot of other people, all sorts of people, joined in the fight to try and get Sloven to take responsibility for LB’s death. They did all sorts of brilliant stuff. Sports stuff, music stuff, they made films, animations, held cake sales, did embroidery, gardening, drew pictures of buses, flew flags, put LB’s name on buses and trucks and all sorts. Lots of people began to know who LB is. There was lots of fun, love and happiness about LB and people like him.
The trouble is, all this fab stuff didn’t stop Sloven behaving badly. They lied to us (and others) and tried to stop us finding out what happened to LB. They spent more money than some people earn in a lifetime on lawyers to do this. Money paid for from people’s taxes. Luckily, some brilliant human rights lawyers and barristers helped us. The inquiry into LB’s death, run by someone called a coroner, found that LB died because he wasn’t looked after properly. He should still be alive.
The report into the other deaths also found that Sloven didn’t care about lots of people like LB. When they died suddenly Sloven said they died of natural causes and didn’t try to find out why they’d died. Sloven were furious about this report. They said it was rubbish and tried to stop people reading it. Then they argued that other bits of the NHS were just the same. Allowing certain people to die early and then say it was natural causes.
We think Sloven don’t really think that LB and people like him are proper people. That’s why they didn’t do anything when they died early. Like a lot of things, they’ve got this completely wrong. We just need to work out what to do about it. Because LB’s death has shown us just how badly some people are treated in this country. And how those people whose job it is to actually do something about this, don’t really care either.
To learn from the Mazars Report and to find answers to prevent future deaths the Independent Inspector ( promised by Jeremy Hunt ) must look at the way Southern Health NHSTrust look after the LIVING service users in the LD & Mental Health population, two possible causes of early death amongst the LD / MH population comes to mind:
1. Over- medication, ignoring NPF’s( Pharmacy reference manual ) red flag warnings NOT to use certain drugs together, NOT without baseline Health Checks & blood picture and NOT for long periods, i.e. drugs like Tegretol / Propanolol/ Aripripazole/ Respridone cocktail commonly prescribed by Psychiatrist / GPs without families’ involvement to “sedate and contain” which helps low skilled managers,staff and Advocates to echo the words ” they are in a happy place”.
These drugs can bring on sudden death from Deep Vein Thrombosis, Pulmonary embolism, sudden drop in blood sodium level ( Hyponatraemia ).
Other slower causes of death when these drugs are used for years ( for my 2 sons : for decades ) are high Cholesterol & blood lipids ( bad fats ); constipation; obesity; Psychosis, loss of balance; hand tremors; etc. THESE DRUGS AND THEIR SIDE EFFECTS ARE ONE OF THE MAIN CAUSES OF CHALLENGING BEHAVIOURS ESPECIALLY IN THE NON COMMUNICATING / SPEAKING POPULATION. ( Mazars” Report p161 have one line on this very important clue as to why our sons & daughters die young under NHS care.
2. Pleads for proactive support planning and help for your relatives are ignored for months and years in our case. Absolute refusal and denial by West Hants CCG Commissioners and Southern Health NHS Trust TQ21 Provider to put in place the 3 cornerstones of good practice which are:
Intensive Support, Positive Behaviour Support and Communication are ignored with contempt, even though funded.
They insist that your child / adult must be in “continuous challenging behaviour for 6 weeks !” before you qualify for Intensive Support Clinical Psychology Team. By being Retrospective instead of being Proactive more drugs are poured daily over your relatives’ brains. Another accelerator to the grave. ( Mazars” Report p 141 briefly refers to this as ” long response time ” could be improve.”
I too have a problem with the way medical men ignore the warnings regarding the suitability of mixing certain drugs together which are often flagged up as being dangerous combinations.
The side effects can be life changing. Withdrawals are a nightmare and worst of all most of the patients being medicated this way have no way of relaying how these medications are affecting them. They literally suffer in silence. Unless of course in my son’s case, they become aggressive. Having a son who all his life has been kind and gentle start to turn into someone who wants to hit people is absolutely horrendous.
We need more research into these drugs. I sometimes wonder if people with LD are being used as someones learning curve and are just being experimented on. I hope I am wrong.
When Geeorge came to speak to our students at Newman University about the campaign last year I mentioned that I thought you should consider writing the story of LB for children. I gave her the example of The Stephen Lawrence story by Verna Wilkins which she wrote in consultation with his mother. It is the story of his life and of course includes his awful untimely death on the last page. There is also The Sad Book by Michael Rosen which is another wonderful tribute to the
Memoryof his eighteen year old son who died suddenly with meningitis. Both these books are wonderful important stories and are widely used in schools and other organisations to help explain the inexplicable.
I hope you don’t mind me suggesting it as something to think about in the future? The Justice for LB campaign is so important to keep going and to communicate to children and young people.
Sorry – I know you dont need to be told that …this feels a bit clumsy particularly as my computer is behaving rather erratically this evening …
important I am a huge believer in the cathartic function of literature and the way that stories can help children in particular develop empathy and also toTo introduce
Intoduce them to ideas about social justice.
Very best wishes
Karen Argent Letterpress Project Director http://www.letterpressproject.co.uk
Karen Argent Senior Lecturer in Early Childhood Education and Care Newman University Bartley Green Birmingham B32 3NT
0121 476 1181 ext. 2479 ________________________________
Thanks Karen, George reminded me of this earlier when we were discussing a possible children’s book on twitter. We’ll give it some thought and get back to you.
A lot of people, doing a lot of jobs, with a lot of titles, costing a lot of money to do nothing, but enforce, and protect a system, that has created, and allowed them to do so, for a lot of years. .