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Telling it how it is

We don't like the term patient story so if you share your experiences with us that's exactly how they appear.

We do ensure that all contributions are legal and safe before we publish and we will edit names if required. You can also maintain your privacy by contributing anonymously.

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Please keep sharing and taking part - it's how we make a change
Phil says

We've been turned down for CHC 3 times now and I'm close to giving up. My partner gets at least 3 Severe categories every time (you only need 2 to automatically qualify) but our CCG and local authority downgrade his presentation and don't present all his info to panel. I gave up work last year we're broke and I feel like it's me as well as him with the diagnosis.

Jack emails

My wife died waiting for an appeal on our IFR (Independent Funding Request) there were apologies and lots of hand wringing, I even got the lessons will be learned bull but it doesn't bring her back. The NHS doesn't care about people only money.

Jack emails

My wife died waiting for an appeal on our IFR (Independent Funding Request) there were apologies and lots of hand wringing, I even got the lessons will be learned bull but it doesn't bring her back. The NHS doesn't care about people only money.

Sally says

People say don't worry you'll get

what you need but you don't and 

the commissioners are horrible no respect no compassion.

Anon

I was told to "go away and do my worst" I hate to think how much my CCG has spent on lawyers fighting me I think they're waiting for me to die.

Liz says

My husband died last year after 3 years of absolute misery. The disease didn't prove to be the worst part it was the fighting for help that never came. Why is it so hard to get what people need?

Anon

I'd heard about postcode lotteries but I had no idea just what that meant. If I moved into the next street I could access one of the best community teams in Manchester - here I get nothing.