The Velcade Three
News
£25,000 handed over to charities close to our hearts
9th August 2010
As a result of our campaign we raised over £25,000 which we handed over to three charities close to our hearts. £18,000 has been handed over to Myeloma UK (The only Myeloma charity in the country), £2,000 to our local Sue Ryder Hospice Manorlands and £5,000 to the haematology and oncology day unit at Airedale General Hospital.
Minutes from Meeting with Ann Keen (Health Minister) 20/07/09
30th September 2008
Last July (20/07/09) I (Jacky), met with Ann Keen to discuss a few outstanding issues that The Velcade Three had and to share some ideas that we felt may aid smoother transition when Consultants are applying for Velcade for Myeloma sufferers.
Notes from Health Minister Ann Keen’s meeting with Ms Jacky Pickles
30th September 2008
Ms Pickles began the meeting by stating that she had previously met with Sir Mike Rawlins, Chairman of the National Institute for Health and Clinical Excellence (NICE) and Professor Mike Richards, National Cancer Director.
Over one and a half years in correspondence with Ann Keen
1st July 2009
More than eighteen months after starting correspondence with Ann Keen (Parliamentary Under Secretary of State in the Department of Health) we, The Velcade Three, have finally been offered a meeting with her.
One year on since NICE recommended Velcade at 1st relapse on the NHS ... What's happened?
3rd November 2008
In the past year we have been busy advising and supporting Myeloma sufferers and their families with regard to accessing Velcade. Our support is not just confined to the UK. We are in contact with Myeloma sufferers world wide.
10 Months on from NICE guidance on Velcade.
27th August 2008
In May of this year we wrote to Myeloma UK, Cancer Charity Cancerbackup and the drug company, Ortho Biotech which makes Velcade.
NICE u-turn over Velcade ruling – Wording Change. Admission.
1st May 2008
Enclosed are the minutes from the meeting we had with Sir Mike Rawlins, Charman from NICE. Please read them and feel free to contact us with your thoughts.
Campaign Update
6th March 2008
We have attended two important meetings over the past month. One was in Manchester with Sir Mike Rawlings (Chair of NICE) on January 23rd and the other was on 26/02/08 in London with Prof Mike Richards (National Cancer Director).
With thanks to Liam Lim - a very special little boy
3rd February 2008
Three women campaigning to get equal treatment for sufferers with a rare form of cancer were in Holmfirth to meet a very special birthday boy. Liam Lim, who recently celebrated his eighth birthday, raised £182 for the so-called Velcade Three after seeing a TV report about their long-running battle to win equal access to a potentially life-prolonging drug for people with multiple myeloma.
Meeting with Sir Michael Rawlings, Chairman of NICE
3rd February 2008
Following our request to NICE we were pleased to be offered a meeting with Sir Michael Rawlings, chairman of NICE, which the three of us attended in Manchester on 24th January 2008.
Jacky and Janice Interviewed for a Radio 4 Program
23rd January 2008
Whilst attending The Britain Against Cancer Conference in London last month we were invited by Radio 4 to give an interview for a program that they were in the process of compiling.
Message to all Lead Clinicians out there
11th January 2008
We urge clinicians to prescribe Velcade for all other myeloma sufferers who need it. We believe the lead clinician should be able to offer individualised care and not be governed by financial constraints.NICE does not replace the knowledge and skills of Doctors and NHS staff. Please prescribe Velcade as and when you feel it is the right time for the Myeloma patient and not just at first relapse.
Happy New Year from The Velcade Three
8th January 2008
Over the past couple of months we, The Velcade Three have been busy trying to keep the issue of Velcade NOT being available to All Myeloma sufferers in the spotlight.
Updating MP'S on the Velcade Ruling
8th January 2008
In November we wrote to every MP in England. Our aim was to ensure all MP's were up to date with the campaign so that if any of their constituents were to ask their MP for support in accessing Velcade, their MP have access to information from our website.
All Party Parliamentary Group on Cancer - 9th Annual Britain Against Cancer Conference
8th January 2008
We were once again invited to attend The Britain Against Cancer Conference hosted by the All Party Parliamentary Group on Cancer held in London on December 4th 2007. Jacky and Janice took up the invitation but unfortunately Marie was still too unwell to attend.
Leeds Myeloma Support group Christmas Lunch
8th January 2008
On Friday December 14th 2007 we were invited to the Leeds Myeloma Support Group Christmas Lunch held at held at the Thackray Museum in Leeds.
Myeloma UK 10th Anniversary Reception
8th January 2008
Jacky and Janice attended the Myeloma UK 10th anniversary reception which was held at the Royal College of Physicians, Regents Park, London on 7th November.
Myeloma TV's Campaigning Channel
8th January 2008
In the Autumn of last year we were invited by Myeloma UK to participate in the making of a short film for their Myeloma TV's Campaigning Channel.
Accessing Velcade at the point of need
8th January 2008
Being able to access Velcade at first relapse at the point of need after consultation with your consultant is a major step forward. However, what can we do to help if you need Velcade after first relapse, a situation like Marie may find herself in, or Myeloma sufferers like Jacky who now want to access Velcade for a second time.
The Yorkshire Awards
26th October 2007
Jacky and Janice attended the prestigious Yorkshire Awards that was held at the Hilton Hotel Leeds where they received The Richard Whitley Special Award. This award is for the person/persons who has/have given outstanding inspiration to others within the County.
A general update
4th September 2007
We wanted to try to explain what this week’s final ruling by NICE means to us, the Velcade three, and all myeloma sufferers in England. It’s been a strange few days for each of us, trying to make sense of this unexpected and unjust decision made by this government body.
Mixed fortunes for myeloma patients
29th August 2007
There are mixed feelings today amongst campaigners The Velcade Three following the publication of the Final Appraisal Determination by NICE on Velcade.
A hopeful decision from NICE
4th June 2007
We, “The Velcade Three”, welcome the news of NICE’s (National Institute for Health and Clinical Excellence) revised preliminary positive guidance which recommends that Velcade is made available on the NHS to some patients with multiple myeloma.
NICE decision has given us new hope
29th March 2007
We are cautiously optimistic about the future of multiple myeloma treatment following the National Institute for Health and Clinical Excellence’s (NICE) decision to uphold the appeal on Velcade - the only licensed medicine for this devastating bone marrow cancer.
So where have we been?
A summary article showing where we've been the last few months.
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