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

HEADLINES

MARK ROTHKO...   On the news today a guy who had damaged a Rothko painting was given a prison sentence.
I saw these Rothko paintings. The are beautiful and gave me the feeling of peace and tranquillity that they were aimed to.
How could he do it. These images are sooooooo wonderful.

PIZZA I've always had a prob cooking pizza, the edges burn. BUT, tonight, for the first time ever , I did it. YEY!!! Perfectly cooked Pizza and wonderful salad.

WONDERFUL SALAD. Do try this . Chop an orange. Add salad vegetables, especially celery and essentially onions. The acid in the orange sort of pickles the onion.. finally sea salt and a small amount of Olive Oil... simple change from vinegar... but so much better... YEY!!

ASSESSMENT. Social services came along today. I asked at what point does health-care take over..  not if you have difficulty showering, not if you have difficulty cooking a meal, not if you are too tired to eat following making a meal, not if you have a problem dressing, not if you have pain in bed because you don't turn over, not even if you have a feeding tube... but only if your feeding tube is troublesome !!!
I await assessment results.
I know I need more help... but what will the assessment say.
The max you have to pay is £220 per week.. with my rent that's £1480 per month... !! EXTRA! Lets not go there.

OT. Contacted me re visit for toilet adaptation due tomorrow... it might not work.. be warned!!! After waiting  two weeks plus 1 day, because there were not two people available to transport possible toilet riser.. I'm totally angered by Calderdale stores team.... I await tomorrow !!

PROF SHAW (MND world expert/ wonderful, amazing woman): Went to Sheffield yesterday. Prof Shaw incensed by my toilet predicament. Will write letter if not fixed. BECAUSE : If a person with MND breaks a bone, the disease will undoubtedly advance....
I am sooooooooooooo at risk at falling off toilet.. and never mind the indignity !! So watch this space.

GETTING BETTER :Having been ill for a week with stomach problems, I'm now nearly better, still a little pain..
BUT I am so in FIGHTING form !

DO WATCH THIS SPACE.... THE MND CHARTER SAYS EQUIPMENT SHOULD BE PROVIDED APPROPRIATELY AND IN REASONABLE TIME............  Toilet... essential !!! Chair.....essential!!.........Care........ essential...... ! so please do watch this space.

Contact your MP. I have. Make them aware. MND is special because it is progressively degenerating, time is of the essence..... we cant wait for equipment, we need it NOW !!!!!!!!!!! Please help, not just me, but anyone with this horrid disease.


HUG ME, I'VE GOT MND.