‘I just want to be happy – is that too much to ask for?’
An Anonymous Story
I have Bipolar, Borderline Personality Disorder and many other anxiety issues. My thirteen-year-old son has severe ADHD, ODD, Dyslexia, Learning Difficulties, severe behavioural problems and thought processing problems. We are both medicated for our illnesses.
We have both been diagnosed and we are both on prescribed medication. So I would like to know why I have had to fight for ten years for my son to access services he has desperately needed. All these have been denied. He’s not allowed to join after school clubs, because it’s too risky. He’s not allowed an education in my county. I have had to seek out the best solicitor, who has helped my son join an out-of-county residential school, who cater for his every need. This school has helped my son so much, yet I had to find this school through a solicitor.
I have had major depression since I can remember. As I got older, I started to self-harm, and now I have a long history of suicide attempts. I have been medicated since the age of eighteen, and over the years I have seen many psychiatrists, CPNs, psychologists and therapists. I have also been prescribed many different types of medications. At the age of seventeen, I was admitted to a hospital for children with behavioural problems. So why was I, in 2008, discharged from my entire network of support, having been told I ‘look’ like I’m ‘coping’? Why have I had to fight ever since to receive support, but have been either fobbed off, ignored or been totally denied access to services needed and lied to?
I am forty-nine years old and I am living in hell. I don’t sleep because of the nightmares and I don’t want to be awake because of the real-life nightmares I have to face daily. If it weren’t for my son, I would have been gone a long time ago, but I stay to try and help him. Like me, he has no one else.
In 2013, how can this be happening to us? We don’t have money or expensive things; we aren’t spoiled. All we want is help to hopefully enjoy our time on Earth. Is that so much to ask for?
Thank you for allowing me to share our experiences.
A Note from the Editor:
I get the impression you live in the UK. Is that correct? I live there too, and I have family who work in social care / social services, as well as friends who are psychologists. I know all too well how common your story sadly is. The government has ‘cracked down’ on benefits over the last few years to a painful degree. Somehow in trying to stop people from taking liberties and living off benefits when they don’t need to, the government has managed to take these away from people who genuinely require that support. Furthermore, this comes on the back of quite a number of people having no tolerance and forming prejudices against people who need that extra help. It has been an incredibly frustrating, upsetting time for many people and I want to thank you for sharing your story, because people like you need to speak out. Otherwise, how will anything ever change?
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B J Mowlem says:
Unfortunately, as mentioned already, this all too common.
We as a family are in the place. Four males with Aspergers and ADHD, plus a wife who has attempted suicide twice. Why? Quite frankly – a lack of support.
Although there are cuts there is also other underlying issues. We too are still fighting, now into the thirteenth year.
In the UK, schools yield a significant amount of power. We have found that without their support you achieve little medically. This is because they are regulated by performance reviews which leads them to not highlight children that will affect this statutory performance.
All schools push to be perceived as coping. Look at performance. Focus on those that can. Push up the results and the few who can’t only lowers the performance level proportionately.
Money and budgets have an pact too. Schools are reluctant to spend where potential results will not deliver a descent score. Try and get a ‘statement’ if the school dies have the funds. Funds issued at the beginning of the year, tend to be allocated and or spent prior to need.
Teachers who teach, in our experience, do not get it. Pastoral staff – brilliant. But they have a very hard fight against their colleagues.
Medical. Budgets and lack of care. Colleague inter-rivalry does not exist. Get a bad doctor who fails to support you and ask for a referal. Just yesterday I was fighting on the phone with CAHMS.
Why? Because the doctor who had failed my eldest (support in school needed due to him failing sixth form. After begging have managed to get him a position in the new term. But he only gets one chance again to fail) the new doctor has told us, ‘wait until he fails again and then we will review him. I do want to go over Dr xxxxxx head’. Justice? I don’t think so.
Is it hard? Too right.
We have had to keep fighting. This is not what you want to hear but unfortunately the case. We pushed for a CAF panel. With that support eight letters were sent by the bodies that attended. Only when that happened did things start to move.
A GP who cares is a major necessity. Someone who is willing to fight your cause.
We are still fighting. One thing I have learnt is; once you have given the ‘do people’ a go and received no help, stop speaking to the canon ball and talk directly to the canon. And yes even the head (top bod) of the National Health Service.
Last suggestion. Book an appointment with your local Member if Parliament. Ours is Steve Webb and he has helped.
Keep going and keep pushing.
Regards,
BJ