CARE FUNDING

In June I had a care assessment . The result was, that it was thought that I needed £163 care per week. Of this, (because of my pension income) I would pay £150.
At this point I was still walking, with a stick, around the furniture, and I was happy with  my outlay of just £25 per week for a cleaner. I therefore didn't get involved with direct payments.

Now, December, my needs are great, and I decided that as I am already spending £100 per week on care myself, that it would be an appropriate time to have another assessment. @Overgate hospice social worker did the referral.
Lydia , a +Calderdale MBC   social worker ,came to do this assessment 2 weeks ago.
The system is that you answer questions about your need. This info is fed into a computer as a set of numbers, and  produces an amount , which is the cost of your care needs under direct payments.

OK, I realise , that I would be paying the major part of this , but as my needs are now so great, I feel I need considerably more help.

I am having great difficulty getting in and out of bed, turning over in bed, cooking, eating, if I have got a meal (  too tired to eat), showering, dressing..............   
I am doing these things,but at great great cost. I have no energy to do any of the fun things that make life worth living. Eg painting , going out, or even reading.... I'm simply too worn out to concentrate on doing anything more than survive. ( That's why my Blog has been less frequent).

So , last Thursday, I received a call from Lydia. The results... £112 per week. A reduction of £51 per week !

Apparently Calderdale Council, have changed the weightings !!

I realise that there are cuts, but this is simply outrageous!

I contacted my care team, OT/ Physio, and they were stunned. It has been arranged that a person from the "Support Planning" team will visit, and do another assessment.....

Watch this space!

This disregard of my considerable need has really upset me. I do have a long term diagnosis of clinical depression... I am feeling very very low, that the quality of my life is to be at the behest of some computer setting. It's not a good feeling. And , damn it, I'm terminally ill!

I want to be me, Nikki ,who happens to have MND... not an MND person called Nikki.

It seems a very sad reflection on our society , that a terminally ill person can't hang on to the essence of their being. Without me being me, what else is there.

(Remember that I know I will be paying most of these costs myself, but a little help would be great, and the acknowledgement that I have great need , is even more important to me).

I hope this all makes sense.

HUG ME, I'VE GOT MND