Monthly Archives: August 2011

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.