Many years ago I believed that doctors went into the profession because it was their vocation, that the cared passionately about people, but over the last 14 years this faith has been shaken to the very core. I knew that there was something wrong with my son more or less from when he was a baby. He cried constantly and when he got to his feet he turned into a tiny tornado. Also, unfortunately at age 4 he was struck down with a serious brain infection that made his behavioural problems worse and caused him to have ‘bad feelings’ after recovery to this day. He is now 14.. Although I alerted the health visitor when he was tiny and saw a succession of paediatricians, psychologists and psychiatrists over many years (all of who made me feel I was a fault) at last at age nine he was diagnosed with Attention Deficit Hyperactivity Disorder. Three years later he was further diagnosed with Asperger Syndrome (high functioning autism.) Only dogged determination and a refusal to accept that my parenting skills were at fault enabled me to get these diagnoses, which meant of course, extra educational help at school which he desperately needed. My son has also had 3 major hospitalised seizures over a 4 year period, (stemming from ‘bad feelings’ which turn into full blown seizures of which he sometimes has dozens a week) and each time was discharged with no help, no medication, nothing. After his last episode which was really horrifying and worse than the other two, I eventually got referral to a neurologist last Autumn, but although another 9 months have gone by nothing has been done about the possible Epilepsy issue. I am even having to prove he is having these ‘bad feelings’ by videoing him having them! Do doctors really think we parents have nothing better to do with our time than make things up just for the hell of it? Loving caring parents are made to feel criminals at worst and at best neurotic because
they live with their children 24 hours a day and know when something is not right. In our case, not only do we have corroborating evidence all through the years from the various schools my son has been to (and failed at) but the three fits on hospital records! On three separate occasions ambulance men came to our house and saw him either fitting or comatose after a fit. Because our present neurologist therefore hasn’t actually seen him fitting we are made to feel liars! This and the other experience we have had regarding his other conditions has left us with absolutely NO faith in the NHS. At the end of the day WE are the experts on OUR children and it’s about time so called professionals were stopped from making parents feel guilty or as if they are fussing too much. After all, if it weren’t for the patients, these people wouldn’t have a job would they. In addittion, because of all the stress we have endured over the years, not only with my son's behavioural problems, but through battling like hell with the health and education to get non existant help for him, both my husband and I have contacted our GP on occassion to try to get something to help us through the bad times. Once we were told "You need a holiday" PRANNY - Weare full time carers! On another occasion we were told we couldn't be prescribed anything because they are addictive. Therefore again, we got no help whatever. Why on earth do we pay National Insurance premiums I'd like to know. In our case, NONE of our family seem able to get any help at all. Are we blacklisted I would like to know?
As a parent of a "disabled" child I find it quite fustrating the lack of care the NHS has for her. Our family does its best but some of her most basic rights are left to flounder in the hope that "someone" will take care of it. I think this country has, at a higher level, decided to ignore problems that do not affect them. The government needs to take a stand and listen, thats what they are there for. Ther is a huge block of votes that could be swayed by a party willing to take on the issue of disability seriously.