I was considered unable to care for myself properly in the early 2000s.  I had about £440 per month credited to a dedicated bank account, paid as Direct Payments which I could use as needed as my condition is so variable.

This continued for about 17 years, with regular visits from Social Services to check on my condition and to see if I still needed help.

In December 2017 a very young woman came to my house and sat down to ask me questions.  She didn’t say she was an assessor.  She then allowed me to show her how I coped.  Having had this disability since 1992 I have developed numerous strategies and acquired various pieces of equipment, apart from paying a carer for around £400 per month. I filled in the forms required every so often.

She then got me to do a sort of ‘demo’. I went to the kitchen and got out a slice of bread, and crossed to the dining room to open the window and throw some pieces out to the chickens my daughter keeps in my garden.

Painting the wrong picture

She said in her report I got some food down from a high shelf and fed my chickens.  It wasn’t a high shelf, it was at eye level and she spoke as if I went outside and fed the chickens in their house. I haven’t been down to the hen house for a year or more, and then with someone with me. 

Everything on her report was slanted towards my capabilities being OK.  I am unable to bath, despite having had a new hip in 2018.  I so often don’t eat properly.  My breakfast is in boxes under my bed so I can eat when I need to.  My lunch is a banana, and my evening meal is literally what falls out of the fridge.

Struggling with the lack of help

Since this person decided that I don’t need help, I have been struggling.  I am weaker than ever.  If I fall I cannot get up again, and I have to do things that scare me just to live. I cannot clean up my clumsy droppings, make my bed or any of the other things we take for granted.

The little bit of life I used to have I don’t have the strength for any more.

I complained immediately this happened but was ignored for about six months.  Then I had some visits from a physiotherapist, but this was mainly about my hip, and another woman who wanted me to do activities.  They can’t seem to grasp the fact that long term ME/Chronic fatigue syndrome destroys your strength. I get visits from a social worker who is lovely but can’t seem to help. None have the clout to tackle the assessor’s word.  Brick wall comes to mind.

I haven’t been outside the house for months except for GP or hospital visits.

 

Have you been affected by any of these issues?

 

This blog represents one individual’s experience; personal circumstances differ – if you have been affected by any the issues in this blog and want some advice about your own situation please contact Independent Age’s Helpline on 0800 319 6789.

 

The views and opinions expressed in this article are those of the author and do not necessarily reflect the policy or position of Independent Age

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