Monthly Archives: April 2011

Beautiful weather!

I haven’t forgotten about the blog but the weather is so lovely it’d be a shame to waste it indoors blogging. Plus I’ve got gardening to do. It won’t last long so I’ll be back soon!


Handy Links (see above).

I’ve spent today compiling a page with various links that may or may not be useful – check ’em out. If there are more that you’d like me to add, leave a comment. I’m sure I’ll be adding lots more.

Here goes.

Since I published my first post yesterday, I’ve had loads of really positive feedback, which is definitely encouraging. However, I’ve also had a timely reminder in the form of a nice ILF (Independent Living Fund) man that, while I fight my own battle for healthcare funding some people are fighting to stay on Direct Payments in order to retain their autonomy and be able to choose who provides their care. Some PCTs have contracts with different agencies and they decide who they’ll pay, not you. What I’m saying is make sure that what you’re fighting for is actually better than what you do or don’t have right now.

Assuming that you’ve worked out that you do want to apply for NHS Continuing Healthcare funding, the following two links are essential initial reading. Don’t be put off by the length of the text; it’s written in plain English and is easily skimmable (despite my friend being told, haughtily, by a PCT assessor, ‘Oh, well, lay-people wouldn’t be able to understand it’! In my experience, the only people who can’t get their heads round the Department of Health regulations are the Continuing Care teams themselves).

The first link is to the the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care, July 2009 (revised).

The second is for the NHS Continuing Healthcare Practice Guidance, published 1 April 2010.

I thinkĀ  that’s enough to be getting on with for now! More soon.

Hello crips (and normals).

So, last Friday I was sitting on my bum, ranting about the ridiculous antics of the idiots at my local PCT (Primary Care Trust, for those of you lucky enough to be blissfully unaware of such things). Then my gorgeously brainy sister said, ‘I can’t believe we’ve never thought of it but you should write a blog!’. So I am. And this is it.

For the past seven-and-a-half years I have had motor neurone disease, also known as MND or ALS. This basically means that on the outside of me nothing much works that well anymore but on the inside I’m as perfectly well-adjusted as the next person. I’ve spent a large proportion of those seven-and-a-half years persuading idiots in various positions of authority that, no, I actually am disabled and, given the choice, I’d love to wipe my own butt and not entertain many odd and hysterical women in my own home, but, until someone discovers a cure for this delightful disease I could do with a few of the things our goverment proudly claim they provide for people like me. Hahaha.

My longest and hardest fight so far has been with my local PCT; they have managed to make one basic request for fully-funded NHS Continuing Healthcare drag on for 17 months to date with no clear end in sight. While I researched what the Department of Health decree should happen in the eligibility assessment process, I discovered that no-one in the medical profession appears to have been informed of or consulted on these matters. This is where I come in. I’m very aware of the fact that while my PCT have farted around delaying the process of my application, most people with my illness would have died. In fact, I know of at least three people, one a personal friend, who did die whilst waiting. My hope and intention with this blog is to provide anyone currently in the dark about their rights with the information that they need to apply and be properly assessed for their eligibility for NHS Continuing Healthcare funding. Watch this space!