Wed 10 Jun 2009 13:43
Mr Hope
My name is Karen Ferguson from Spalding in Lincolnshire. Earlier this year I wrote to our MP John Hayes with several questions about the set up and reasoning behind the question of Carers Allowance. I was very disappointed by your response which showed no care and little understanding of the issues.
I was a member of the chatroom yesterday on the PRTC Carers site and it was again very disappointing. We waited ages for responses and when they came they didnt feel as though they were in direct response to the question but rather a prewritten government report.
This morning you were interviewed on GMTV by Andrew Castle and I am pleased that he put my question to you regarding your expenses overclaim and its relation to the paltry amount we receive in Carers Allowance.Whilst I realise that the expenses overclaims are part of a culture in Parliament which has wrongly been allowed to continue without check it is really infuriating to know that the man who is paid to look after our interests as carers has so little moral or even basic human concern for the poor level of financial support and regard in which we are held.
Even with your MPs standard issue blinkers and ear plugs [humour not intended] you must be aware of the growing unrest in the country on this issue and you owe it to the British public to listen properly and take action to remedy the situation. After all, what have you got to lose? Either you slide out of your constituency at the next election with your tail between your legs and become no more than another failed minister on the statistics of government OR you can MAKE A DIFFERENCE! I assume that is what you went into politics to do but have somehow lost your way maybe? Am I wrong?
I wrote the following on the PRTC site this morning. It is fairly raw and from the heart and some of the other carer members thought I should send it to you.
"I dont have a choice. My sons are my sons, Autistic or not, and my hubby is my hubby, Paraplegia or not. However it has meant me giving up my own job/career and having freedom to have an independent life within the family. It has stopped me being able to sleep through the night and I dont get any days off or proper holidays.
It has isolated us all because family have excluded us or kept us at arms length since the boys were found to be Autistic, other parents didnt want their children mixing with Autistic kids [ they moved to other end of playground, barred them from playing with our boys in our neighbourhood and encouraged their kids to bully them at school] and either didnt talk to us or talked to us in an odd way and we have found people stopped inviting us to socialise because the disability gets in the way for them.
Then the schools stopped wanting to know or help our boys so the full-time care was supplemented with full-time education at home. The professionals all acknowledge that this has been best for our boys but they have left us to it and refused to offer any support "for fear of setting an unsustainable precedence"!!
Social Services have put up every obstruction in the book rather than offer any respite or support for the boys - delays, staff changes, lost records, mysteriously disappearing letters, extended staff sick leave, denying the boys are Autistic in direct denial of professional diagnoses, then seeking to deny that Autism is a disability, threatening me with being accused of Munchaussens syndrome if I fight , then saying that in any case they "dont do Autism" and eventually that if the boys are to have any support to socialise I will have to manage it myself and create the opportunities on my own. As for respite, even after hubby attempted suicide and became Paraplegic I was told it was my duty as a wife and mother to care full time without a break - no more no less. The mental strain has been /is enormous and this resulted in hubby attempting suicide and becoming Paraplegic as a result. I struggle with my own mind but have to battle through as best I can - which is frustrating because I know I am not performing and achieving to my optimum because of this.
I am sure disabled people have a negative connotation for society because of the cost to society but I calculated that by caring for and educating our sons we were saving the country about £60000 a year in their school years because they required educational statements, special support in school and transport to and from school. We opted not to bother with the stressful and non-productive regular visits to see the Paediatrician as that was a waste of NHS resources.
Is any of this my fault? Why do I feel I am being treated prejudicially as if it is and I should deal with the consequences? If I could afford it I would like to be able to tell them to stuff their £53.10 a week where the sun don't shine as it is a paltry insult to offer me that in recognition of what???
Yours in good faith
Karen Ferguson