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.

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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.


Motability and other bureaucratic delights!

I’ve recently ‘met’ a newly-diagnosed fellow MNDer via Facebook (the wonders of social media indeed!). Finally, after ridiculous amounts of hoop-jumping, she’s recently been awarded DLA and is now ordering a new car through Motability.

Having spent nearly eight years with what’s thankfully now become ‘slow-motion-ALS’, I’m always worried about people who are starting their journey. The fact that it’s virtually impossible to anticipate what parts of your body are going to fail next added to not knowing what to do or how to cope when that happens makes it seriously unlikely that anyone will pick a car that will still meet their needs in a few months time, let alone throughout the three or five year contract. I decided to write her an email and explain my hideous experiences. Then I thought I could post it here & hopefully it might help others in a similar position. Here it is.

‘well, i originally got an automatic focus but within months i could hardly get in it, let alone drive it. i then bought a passenger seat which comes out of the car to make transferring easier. i still have it so if you want it at any point you’d be welcome to it.

‘so, a year in, that became too difficult and i spent another year trying to get an early end to the motability contract. i eventually got a kia sedona with a ramp at the back so i could stay in my wheelchair in the boot of the car. now the five years of that are up, i’m finding it really inconvenient & uncomfortable being in the back. if i sneeze or dribble i have to wait for the driver to pull over, get out & climb in the back to wipe me. the suspension is really tight in the back for the lowered floor which means that now i’m weak i bounce around in the back quite painfully. i’ve hit my head on the ceiling, bitten my tongue, come out of my chair, etc. a few times. it’s horrible.

‘this time i’m getting a VW transporter that is adapted for me to sit in the front passenger space. there are smaller up-front WAVs available – you don’t have to have a bus! i just need the space for my equipment when we go away.

‘if you get a wheelchair accessible vehicle – WAV – you can still drive or sit in the front but when you lose your ability to do that you can relax, knowing whatever your needs are the car will still work for you.

‘i’d be very happy to help you in any way i can, maria. if we have to endure this hideous disease then we need to get what we’re entitled to!’

As an addition, please message me if you would like the retractable front seat. It’s in my mum’s garage. She wants rid and I’d far rather someone was using it!


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.


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