Well, I’m finally bored with procrastination as a lifestyle choice so it’s time to update you on recent happenings.
A couple of weeks ago, I finally managed to negotiate a face-to-face meeting with my MP. It went well, in that he understood why I was complaining about the PCT’s behaviour and the ridiculousness of the DWP policy on signatures. He said the right things in the right places but lost marks when he completely failed to look me in the eye when I was speaking. Fair enough if you don’t understand my speech but you could at least have the decency to pretend you are interested in communicating and say, ‘Pardon?’ at the end! I think he needs a bit of awareness training. Perhaps when he’s done everything I want him to do for me I’ll educate him, although I’ll have to do it in writing.
Anyway, he confirmed that NHS Berkshire West’s Chief Executive had made no contact with him since promising to investigate in August. Why am I not surprised? He chased it up and just today I received a copy of the letter from the Chief Exec with exactly the same meaningless promise to look into it as he wrote last time. Don’t hold your breath, people! I’m seriously thinking of making the same complaint to the Parliamentary Ombudsman. We’ll see if the PCT can ignore him too.
Rob Wilson also proposed referring my signature issue to Maria Miller, the DWP Minister for Disabled People. I am not too hopeful about her involvement as what I’ve read about her online makes her appear to be about as useful as a chocolate teapot.
I feel like the meeting was just one more step along a very lengthy path. I don’t know how much I can ultimately achieve but I intend to keep making a nuisance of myself and hopefully people will do what I want them to, if only to get rid of me. I’ll certainly be chasing up the MP if he goes quiet but so far so good.
For those of you who are interested, this is the letter that I sent to my MP, Rob Wilson, last week:
Dear Mr. Wilson,
Thank you for your letter of 27 July 2011 in which you informed me that you were in contact with C. W., the Chief Executive of NHS Berkshire West, regarding a letter which you received from my consultant neurologist, Dr. R. H., of UCL.
I very much appreciate your attention to this matter to date. To ensure that you receive an accurate representation of the facts, I have attached a chronology of my dealings with the department in charge of Continuing Healthcare at NHS Berkshire West. I apologise for the length of the document but, as you will note, it took me 18 months of extremely hard work to achieve being assessed correctly as to my eligibility for Continuing Healthcare funding.
I have also emailed you recently regarding an inquiry by the All Party Parliamentary Group on motor neurone disease (MND) which found that many patients are not receiving access to specialist palliative care and are being left to suffer the debilitating effects of the disease alone. I wrote asking you to sign the Early Day Motion 1943 and to write to the PCT to make them aware of the APPG’s findings.
I would therefore appreciate being able to meet with you to discuss not only my specific case but also the wider implications of our local PCT withholding vital care from MND sufferers.
Yours sincerely, etc.
Apparently, he’ll respond within 14 days, so I’ll post his reply when I get it. I’m really looking forward to a meeting with someone who a) shouldn’t lie and b) has some power to change the way the PCT behave. I’m probably being naive and stupidly optimistic but I still hold out some hope! If I didn’t I’d have given up years ago.
For anyone who’d like information on the Early Day Motion 1943 and who could email their own MP (hint hint! It takes five minutes and every email raises awareness that little bit more, so please think about doing it), check out MND Campaigns.
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 think that’s enough to be getting on with for now! More soon.
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!