AMMF’s external activities – a year end summary
AMMF is now recognised nationally and is rapidly becoming the ‘go to’ organisation for cholangiocarcinoma (CC), both amongst the general public and within medical circles.
For some time now, AMMF has appeared on the NHS Choices website and, earlier in 2013, the charity took part in both the NHS services commissioning review for HPB cancers, and in the NCPR (National Cancer Peer Review) consultations regarding information to appear in the NHS “My Cancer Treatment” site. Towards the end of the year, AMMF was invited to take part in Cancer Research UK’s focus group discussions re targeting their research spend – it goes without saying, AMMF pushed for a fairer proportion of the spend to be allocated to the rarer cancers!
AMMF’s other external activities of note include:
• Cancer Research UK requested AMMF to review the new section for bile duct cancer (cholangiocarcinoma) on their patient information website, CancerHelp UK. An enormous task, as much of the prepared information had been taken from out of date sources. Over a year later the site is finally live and most of AMMF’s comments (but not all!) have been acted on. AMMF’s work is acknowledged on the site, and the charity is listed as a resource. To see CancerHelp UK’s bile duct cancer information section, click here
• As a member of the NCRI* Upper Gastrointestinal Hepatobiliary subgroup, AMMF has made valuable contacts with those at the forefront of cholangiocarcinoma research and treatments. This group is concerned with the development of various clinical trials, including those for cholangiocarcinoma. Through involvement with this group, AMMF is able to put forward the CC patient’s point of view, and also to review information from the patient’s perspective.
• AMMF is an active member of Cancer52 – the umbrella organization providing the “the common voice for less common cancers”. Through Cancer52, AMMF has a presence and a voice within every national cancer initiative, which is increasingly important, not least because of the rapidly changing face of the NHS.
• AMMF was asked to submit information on its research spend to the NCRI* (National Cancer Research Institute) who, working with Cancer52, have prepared an analysis of the research spend in the rarer cancers during 2012. This report, “Research into less common cancers” is the first of its kind and it is hoped it will provide a base line for the future.
• AMMF was asked to participate in the complete revision of the “Guidelines for the Diagnosis and Treatment of Cholangiocarcinoma in the UK” – first in ten years –which was undertaken by a group of leading specialists and published in the prestigious medical journal, GUT, in August 2012. To read more about this, and to access the downloadable version of the Guidelines on AMMF’s website – click here
• The Thai Connection: In June 2013 , AMMF’s Helen Morement was invited to Imperial College to give a presentation on the work of the charity to a group of visiting Thai cholangiocarcinoma experts. Their visit was to finalise the setting up of a formal research collaboration between Khon Kaen University in Thailand and Imperial College London. Thailand has the world’s highest incidence of cholangiocarcinoma, and it is hoped that this collaboration will prove useful to both sides.
As a result of this presentation, Helen Morement has now been invited to attend the three-day international workshop being held in Khon Kaen, Thailand, in March 2014 to talk again about the work of AMMF. (This event is fully funded by the British Council.) To read more about the Thai Connection, click here
• Early in 2013, AMMF was asked to become involved in the first stages of The Saatchi Initiative, now known as the Saatchi Bill. Despite various hurdles, the Bill has had its 2nd reading in Westminster and with the backing of Health Secretary, Jeremy Hunt, is now going forward to full consultation in early 2014. More information on the Saatchi Bill can be found on AMMF’s website – click here
This is a just brief resume of the work AMMF undertakes to promote the awareness of cholangiocarcinoma amongst both the public and the medical profession, and to make more information available to those who need it. During 2014, the charity will continue to make representation whenever and wherever possible.
*For info – NCRI, The National Cancer Research Institute is a UK-wide partnership between the government, charity and industry which promotes co-operation in cancer research among the 22 member organisations for the benefit of patients, the public and the scientific community http://www.ncri.org.uk/