News and Blog

News and Blog

Date:
13-05-13

Author:
Empower

A Wholehearted Thank You

A Wholehearted Thank You

It has been another incredible fortnight for the campaign. Last week’s Sunday Times featured a fantastic letter of support for our campaign.

I was overwhelmed to find that Professor Stephen Hawking, Sir Bradley Wiggins, Tom and Sarah Parker Bowles were amongst the many notable people to add their names to the letter.

I cannot thank enough our supporters across the academic, patient and political spheres. In particular I’d like to thank Emily and Nick Crossley, The Duchenne Children’s Trust, and Alex and Andy Johnson, Joining Jack, for helping us contact some of these excellent supporters.

Our e-petition now has over 2,000 signatures, in no small part due to the excellent social media activity we’ve had. I gather even Peter Serafinowicz gave us a ReTweet (for you twitter novices out there, this is a good thing).

Keep an eye on our website for further updates, and for those of you based in Oxford, tune in to BBC Radio Oxford on Monday for the morning drive time as Professor Kevin Talbot will be discussing our campaign. I also recommend you read our latest blog contribution from Oli Rayner. He makes what is a challenging and complicated subject very approachable.

The attention the campaign has recently received  demonstrates the consensus on this issue. Our collective voices shout louder than the individual, and it is comforting to know that I am not alone in my mission.

With best wishes


Les Halpin

Comments

  • Thank you so much for all your wonderful work, which we are sure gives hope to so many people.  My husband has multiple system atrophy which, in his case, is accompanied by excruciating “central” neuropathic pain.  Not only do we have a great interest in improving access for terminally ill people to new drugs, but also to allowing realistic doses of existing drugs that match the patient’s needs, physiology, etc.  His pain is inadequately managed because of “blanket” prescribing restrictions on the powerful drugs he needs (even though at over 6ft and 17 stone he is much larger than the average patient).  Why does our cat receives medication dosage calculated on its exact weight and yet my husband is subject to exactly the same “blanket” restrictions as a person half his weight?  It is clear that his GP’s ability to prescribe what he needs is inhibited by concern that the symptoms that we know are part of his illness are drug related.  We know they are not and my husband would be delighted to sign a disclaimer.  His GP (who is very caring in many ways) actually made him sign a contract that he would not exceed the stated dose (no doubt “covering” himself with the authorities)!  So, hopefully progress at last.  Thank you again for your wonderfully courageous work and very best wishes.  Alison and Peter Martin.

    Alison Martin 13-05-13 5:35pm

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