I’m wearing my trustees hat today and will be spending some time at Headway Cambridgeshire with its excellent CEO Andrew Gardner.
Next week is Action for Brain Injury Week and it will focus on highlighting research which describes the discrimination and prejudice experienced by brain injury survivors, as well as the lack of proper care they are given by agencies which should be supporting them.
I am particularly concerned about brain injuries suffered by our serving soldiers and whether it is correctly diagnosed and treated once they return home.
Richard Hammond has described how 18-months later, he is still has difficulties following his brain injury sustained after a 300mph crash. This is sadly not surprising, and it is true for many others in the same situation.
We should all count our blessings because any one of us could one day have an accident that leaves us brain injured and will change our lives for ever.
This is how Ben Edwards, one of our Cambridgeshire service users, describes his experiences of being brain injured:
“My brain injury is largely invisible. I wear a beanie hat to cover the scar from surgery but everyone thinks it’s just a trendy thing to wear. After my injury I found it difficult to remember things and string sentences together. Down my local pub they thought I was drunk before I’d even had a drink!
“Knowing you can’t do all the things you once could knocks your confidence without being self-conscious, or humiliated in public, as well. People are too quick to judge.�
Andrew highlighted how brain injury survivors were being let down by the agencies which should be supporting them:
“The results of this survey are shocking. We are appalled that so many people with brain injuries across the UK are being mistreated by statutory agencies and facing prejudice by wider society.
“Three years ago, the government launched the National Service Framework for Long-term (Neurological) Conditions. This framework was designed to transform the way health and social care services support people living with long-term neurological conditions. The results of our survey clearly show that in three years, very little has been achieved and the NSF has to date been a failure.
“Brain injury can have devastating effects, which can often last a lifetime. It can affect every aspect of you: walking, thinking and feeling, and can mean losing the life you once led and the person you once were. People trying to deal with these life-changing conditions need our help and yet they face discrimination and prejudice in their everyday lives. We hear numerous stories of how our service users are often bullied, harassed and ridiculed for their disabilities, which is highly disturbing in a sophisticated society like ours.�
As you say this could happen to any of us at any time.
Discrimination, prejudice and lack of support and care, i hear all too often. Its heart breaking.
Elle, I must congratulate you for highlighting this subject. In fact I really admire your energy.
“After my injury I found it difficult to remember things and string sentences together. Down my local pub they thought I was drunk before I’d even had a drink! “Knowing you can’t do all the things you once could knocks your confidence without being self-conscious, or humiliated in public, as well. People are too quick to judge.â€?”
That was my experience too, there was no practical help from the NHS, one locum diagnosed depression (when I was suffering PTSD and aphasia) and just tried to put me on Seroxat which, thankfully, made me sick, so sick I couldn’t take it. But yes I had suicidal thoughts after – who the hell wouldn’t when the pain from my headaches and other injuries was so severe and I would wake up every morning covered in blood, screaming? I lived alone so I wasn’t a bother to anyone but I was obviously a bit of a bother to the NHS and my legal team was less than useless. The so called ‘experts’ had no background in head injuries and the unspoken conclusion seemed to be that my physical problems didn’t exist, because they couldn’t be ascribed to a broken bone, which means, I guess, that they were calling me a liar, and making the ending of my life as it was, was some kind of sick joke. I had great difficulty with conversation and people just reacted to me as if I was stupid – I’ve become very sensitive to being called stupid.
Headway is a fantastic organisation whose literature explained what was happening to me and I found that I wasn’t insane just injured. Treatment and healing was possible and concentrating on that had a psychological benefit too, of course. If you can support any charity today I urge you to consider giving to Headway. It offers real pracical help to people in need.
Casdok, I know exactly what you mean. The tragic thing is that these vulnerable people have to rely on the expertise and knowledge of their family to fight their corner for them to provide the best medical care. That’s why Headway is such a wonderful organisation.
Marymary, I often talk about Headway on my blog to highlight its excellent work. I must admit that I do flake out from time to time too!
Crash test dummy, I am really sorry to hear how you suffered so much after your head injury, as if that wasn’t bad enough. And thank you for your great endorsement of Headway, I know it will be much appreciated. I certainly feel very privileged to be one of their trustees.
good for you ellee – I don;t know anyone who’s had a head injury but it msut be life changing and terrifying.
Any one of us could also have a stroke, Ellee, and that is a terrible brain injury. Its effects other than speech and coordination injury aren’t widely understood, yet stroke-related dementia is as distressing as Alzheimer’s.
I do admire what you are doing here.
[…] Chris had suffered a brain injury after a bad fall when visiting Sue in hospital and I’m wondering now if his unsteadiness could have been something to do with that, he still complained of memory loss. I naturally badgered him over the last year to get medical attention and he was hoping to have an updated brain scan. […]