CONTINUING CARE ASSESSMENT

For some time now the NHS has picked up the cost of my night carers.. ie 60% of the care package budget.
At the review,a few weeks ago, the NHS agreed to pay 80% 0f the total cost and also agreed that another assessment would take place very soon. Indeed it was soon, 10days later.

At a previous review I sat with my Social Worker, a member of Scope staff and a man do with funding. I was very annoyed with the man as he came in and sat behind me... I eventually moved. But how rude to sit behind someone in a wheel chair.. well to sit behind anyone actually, ..........well except perhaps at the pictures !
At that meeting 2 out of 3 people wanted me to sign a  care plan off, which basically meant that I would get 1/2 hr extra time !! No B....... Way !!!

It was difficult for me, three against one so I determined that at any future meeting I would have some support.

Thus it was that my lounge was rearranged to make space for at least 7 people ! I was expecting the NHS person, the social worker, physio ( at my my request) , my friend John and my carer !

It couldn't have been a different meeting. All the people were very supportive as we filled in the long document. It did get to one point about communication... I communicate well... but felt the need to explain to the NHS woman that though I appear bright and articulate inside, I'm actually very frightened. Being a good communicator doesn't mean that you are glossing over feelings but I thought they may feel that I was just fine !Anyway at this point I broke down. My breathing and voice came out in gasps. The group showed nothing but kindness and support.

Then I composed myself, and eventually we got to the section on mental health... I said I had depression ... yes said NHS woman, you are bound to be depressed with this diagnosis... No, said I, I have a long term diagnosis... she was surprised and that got me another high level of need. In the end there were 5 high levels and though she has to take the info to the panel next week she said it would all be fine. I would have 100% NHS funding. In fact it means now I don't have to jump through hoops !
At an instant she increased my daily care by 1 1/2 hrs per day.

I feel this went well... but if only I had known I wouldn't have had to re-mortgage my house by so much.... but what the hell !! it now means that I can have any treats I wish and not worry about money.

I wonder how many of us with MND have continuous care... was it an ordeal for you? Was it difficult to get?

I feared the whole process, because every other step of the way has been so difficult and every step taken so long to get resolution............. But this was easy, and also means that I am now getting the care I need..... Unless the govt steps in !!!!!! Fingers crossed !!!

HUG ME , I'VE GOT MND