by
simone » Thu Jun 24, 2010 5:21 pm
Hi. I have been a carer to my daughter for 22 years. She was diagnosed wrong at three years old. She was diagnosed with receptive language problems.I asked for a re diagnosis and had a second wrong diagnosis. At the time I had a carer's assessement that I did not agree with. I went through a first complaints procedure until finally stress took over and I could not continue. I finally got a right diagnosis after I refused the second one.
We finally received a correct diagnosis of turner's syndrome. I then started a complaint against the paedritician,and GP. As well as doctors who decided to join forces with the disability team and give their point of view of my words and my daughters. I disagreed with all reports. I have been fighting this for 2 whole years and I am exhausted but finally we have reached the point that it may go to court.
We will know very soon. Disabled adults have rights to have their point of view and to be listened to. I have rights to have my point of view on my daughter's and it should not just be a point of view of the doctor who met her three times to portray a person who has no confidence and self esteem. His point of view.
I have also been on the politics show and spoke about carers and working. I have also written to my MP for several years writing to him about lack of help educationally. I got nowhere but now ready to start again with a new MP. I also try and comment on a site called they work for you.