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Fresh Mud

A blog about living with FSH muscular dystrophy. Questions?

Post 23 of 46

Care funding

Saturday 28th August, 2021

Back in 2013, when it was decided that I should use a C-PAP machine overnight, I was approved for full CHC (continuing healthcare) funding because my care would need to be increased to include overnight carers.

Fast forward five years and I received a phone call on January 1st 2018 asking if I had received a letter about a care funding meeting scheduled for 10 o’clock the following morning; I had received no letter. (As a side note, I had never received a phone call asking about a letter before, nor have I since.) During the meeting my funders, myself, and the only available nurse (who didn’t know me very well) went through something called a decision support tool, whereby we go through each part of my care including mobility, medication, mental well-being etc., and rate my needs; at the end, the resulting score influences whether or not I receive full funding. We argued on several points and my final score was below the required threshold and so my funding was cut.

The next step was for them to assess my finances, taking into account my income and any outgoings that they classed as necessary, and the result was that they required me to pay almost 2/3 of my income towards my care. Shit.

I appealed the decision and attended another meeting where we went through another decision support tool, this time with a social worker and a different nurse supporting me, but the original decision stood. My social worker also informed me of a solicitor who was willing to take a look at my case and fight it for me, for free, but after reading the notes they declined.

In November of last year I received an email from a lady named Natalie who informed me that she was the appeals nurse and would be taking up my case; this was a surprise as I wasn’t aware that my appeal was ongoing. We spoke on the phone a couple of times; she was very helpful and very reassuring. She liaised with staff at the neurological centre I live in, requesting all the records from the time period leading up to the original meeting and decision support tool; I went back through my personal diary and even managed to make some notes myself based on what I had written after that meeting. A date was set for a virtual meeting, which I was told was called a “local resolution panel.”

I was very nervous before the meeting and was panicking that there would be nothing more to add; I managed to calm down a little by telling myself that, if it didn’t go my way, then nothing would change and I wasn’t losing anything. During the meeting, Natalie added a huge amount of missed information as we went through the decision support tool for what was the third time for me; I spoke up and added my own details, too.

About three weeks later I received a letter informing me that the decision from January 2018 had been reversed, and that not only would I go back to receiving fully funded continuing healthcare, but that I would get back all the money I have paid in the meantime; I couldn’t have been happier. I contacted Natalie to tell her of the good news and to thank her for all the work she had done to help me.

This was just over eight weeks ago and, not only am I still waiting for the repayment, but I am still getting bills that I am having to pay; I have been assured that once the funders hear back from Worcestershire County Council then things will be resolved but, as with anything regarding the local government and money, I am not holding my breath.