Blog posts in Carer for daughter

I have been a little down over the death of the NHS.

23rd March 2012

Posted by Simone

Thousands of people fought against the bill and to hear such bad news yesterday really hit me, It is not just about me. It is about the many disabled and the many carers it will affect. Who will now have time for Carers? It certainly won't be your GP. He will be too busy being an accountant instead of a doctor. Already we have so little help, so little advice yet everyone thinks there is help out there. If there is in 24 years of caring I have not seen it.

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My daughter is on low mobility yet I have driven her round for her whole life.

21st March 2012

Posted by Simone

My daughter was once on middle rate but it was removed after she was taught to travel to one town and she was put on low mobility. She was also taught once to go to the cinema. There was no reason to keep going to that one town as she hates it. She had no friends to meet and doesn't understand money fully. She needs me to buy her clothes and I never shop for clothes or shoes in that town. She has no interest in clothes and will probably spent the rest of her life if no one goes with her if anything happens to me. She can walk and she can talk.

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CBT assessment

15th March 2012

Posted by jakerleen

Cass had the assessment today and it went so well. He diagnosed her with agorophobia and a panic disorder. He thinks 15 sessions and he can have her to the point where she is able to manage going out alone again and cope with life more. Just feel so happy for her. The only thing I really need to discuss with him is that autonomic dysfunction (POTS etc which comes hand in hand with EDS) can cause panic disorder, so will take some info with us when we go next Tuesday for the second part of the assessment.

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How will carers ever be able to afford private health care? Stop the NHS Bill.

02nd March 2012

Posted by Simone

I don't know if you have been keeping up with the news but it is important that you realise that the NHS is heading for privatisation. I don't know about you but I haven't worked for many years as I have had to look after my daughter who has a mild disability.

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I think Government is wrong to remove mild disabilites: Welfare Reform

08th February 2012

Posted by Simone

The intention of government is to make payments only to Moderate and Severe disability. My daughter has a mild disability. I don't know what MP's think mild disability is but it surely makes a difference as I can not work and I am with her every day as I have been throughout her 24 years of life......

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My girl

31st January 2012

Posted by jakerleen

I know this is short, but I had to write today to say how proud I am of Cass. I know how much of a struggle it's been for her and this time last year I would never have imagined that she would be where she is today. On Thursday night she managed to go out for an hour to a local, quiet, pub with some friends and today she has gone shopping with Amy & Kyle (her best friends) to Merry Hill. She still can't cope with being alone, or going on the bus etc, but to me this is amazing progress. Just wanted to be a proud mommy xx

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No life of my own

25th January 2012

Posted by Simone

I have been a carer all my daughter's life. She is now 24 years old and still at home with me. I have had to do what she wants in life not what I want to do. Three years ago I started taking my daughter out in th evening so that she can socialise. However three years have passed and she still has not made any friends. This has a great impact on my life as I gave up my friends. I don't have anyone to leave her with and she won't stay with her father as their relationship has broken down.

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She still believes in Santa but...

19th December 2011

Posted by silvergirl

After a great week in the snow in Sweden with three generations of the family enjoying Santa, sliegh rides, snow angels and Glug wine we flew back into heathrow late yesterday afternoon and landed with a bump literaly. Our daughter is only 4ft tall and complete with her body cast wieghs only 34 kilos. If she were under 12yrs of age she would have to use a car seat or booster cushion in the car to make travel legal.

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Another letter from Lord Kirkwood. Re Welfare Reform Bill

20th October 2011

Posted by Simone

I sent off over a hundred emails to Lords. Not all went as some came back post failure. I was pleased Lord Kirkwood took the trouble to answer and thanked my for my point of view. It is important that if you have time try and at least write to your MP and tell him how the cuts will affect your life and Carer's life. The Welfare Reform Bill is still at Commitee stage and we still have some hope.There are more addresses on here. They work for you site will only let you send a few daily.

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Welfare reform Bill answer from Lord Kennedy:

13th October 2011

Posted by Simone

I was pleased Lord Kennedy wrote back but it seems we still have a lot of work to do. He gave me a list who to write to but no email addresses so today I must start searching as we only need to send one letter to each of the people below. If we don't speak up we have no hope. This is what he wrote in answer to my email; Thank you for your email.

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