Tag Archives: MND

Fab friends!

You guys (you know who you are!) have been amazing! Over 30 of you have emailed your MP.

A schoolfriend, Karen, sent me the reply she has already received from Reading West MP, Alok Sharma, which I’m posting here so you can all read it.

‘Thank you for contacting me regarding the APPG report on MND and palliative care.

‘Progress is being made in improving end of life care. The APPG report helpfully draws attention to the need to ensure that good quality end of life services are available to all, whatever their diagnosis.

‘The work Ministers are doing to improve end of life care, and modernisation within the health service will raise the quality of care for all patients and address many of the concerns set out in the report.

‘With regards to the Early Day Motions, I make a general rule of not signing these. They have no legislative effect, are almost never debated in Parliament and cost the British taxpayer over £600,000 annually in printing and publication costs alone. I do not feel this represents a good use of public money especially given the size of the current budget deficit. I will, however, ensure that the relevant Minister is made aware of your concerns.’

I’d be really interested to read some of your thoughts and opinions on this response. You can put them in the ‘comments’ section below. Obviously, I’m passionate about the subject so I know my immediate & emotional response is that it doesn’t address any issues at all. The following topics really bug me:

  • The Tories are actually systematically dismantling the NHS, piece by piece, which is a whole other issue.
  • I KNOW for a fact that the NHS PCT in his constituency are knowingly ignoring the Department of Health directions on how people should be assessed for healthcare funding. I can only assume this is financially motivated so can’t see how it will ever improve, especially ‘given the size of the current budget deficit’!
  • What about the people who are dying of motor neurone disease RIGHT NOW? 50% of people with MND die within 14 months of diagnosis; by the time MPs have faffed about and rejiggled the NHS, many people will have died, some of them without the support that they and their family & friends need, deserve and are entitled to.

I really want to hear your views on this, guys. I know my emotions can obscure my rational brain! Be honest too.


PCT update

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.

Great articles (yes, I’m back)!

Before I forget, check out these two articles from today’s news:

Daily Mail article on assisted suicide

While I violently disagree with absolutely everything the Daily Mail stands for and 99.9% of the tripe published within it, I think everyone should be aware of this horrid issue that people like me have to think about.  Specifically,

‘Travelling to Switzerland means people with degenerative diseases who wish to die have to do so earlier than they feel necessary, to avoid it becoming too late to make the journey. Sir Terry said, “That’s what makes me so angry, because I am absolutely sure that if Peter had not had to go to Dignitas, he would probably still be around now.”‘

Before anyone starts panicking, I also heartily echo Sir Terry’s sentiments on assisted suicide: ‘I have no particular interest in ending my life in Switzerland… Actually, I don’t want to die at all, to tell you the truth.’ Couldn’t agree more! I just think that if I did want to let go I should have the same rights to do it as any able-bodied person without having to travel to Switzerland or jeopardising my loved ones.

BBC article: Neurology care ‘is lacking’

All I have to say to this is NO SHIT! When my dad wrote to Theresa May, his MP, to draw her attention to the need for a government-wide, logical approach to help people with motor neurone disease, all he got back was a form letter extolling the virtues of the National Service Framework for Long Term Neurological Conditions. Yeah, because we can all see how useful THAT’s been! It’s about time politicians woke up and realised that saying things SHOULD be done isn’t as useful as actually making sure that they ARE being done in an appropriate, efficient and adequately-funded manner.

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!