We campaign on behalf of those affected by MDS
In addition to its role in providing patient support and information, the MDS UK Patient Support Group has an important place in campaigning on behalf of those affected by MDS. In collaboration with professional advisers covering healthcare, the political scene, the media and Government we campaign to ensure that the best possible resources are available to all affected by MDS wherever they are and whatever their circumstances.
The Group has been involved in providing input to the National Institute for Health and Clinical Excellence (NICE) on a number of issues, and has representatives who belong to Patients Involved in NICE (PIN). We also campaign in collaboration with other organisations representing the less common cancers including Cancer52 and the Cancer Campaigning Group.
We have regular dialogue with a number of MPs and peers, particularly those with appointments in health or a strong interest in healthcare matters, to keep them informed about MDS and its treatment.
On 24 February 2017 NHS England reversed its previous decision after a strong campaign by MDS Patients Support Group, Anthony Nolan, all other blood cancer charities. More than 25,000 people responded.
An extra-special thanks to the Hepburn family, who showed so much courage and campaigned selflessly after Gavin's death.
On 20th April a group of seven MDS patients and carers went to Westminster to raise awareness of rare and less common cancers and highlight the need for earlier diagnosis.
NICE and SMC recommended azacitidine (Vidaza) and lenalidomide (Revlimid) for routine NHS use, available nationwide in the UK. Learn more to check if you are eligible.
We revised our Rarer Cancers Toolkit for MP's.
This is a most useful document to share with your MP to explain what MDS is - and what he/she can do to assist and represent you as their constituent at government level:
MP Rarer Cancers Toolkit
Your constituent, their treatment and how you can help. Updated July 2012
2010 Campaign Events
The Parliamentary Lobby Day on 26th October 2010 was extremely successful. Numerous patients were able to speak to their MP’s personally and discuss the issues surrounding MDS, access to treatment, NICE time-lines and the Cancer Drug Fund.
MDS UK also released the results of a survey that found that 2/3 of MPs didn't know what NICE HTA or a QALY was.
Watch the discussion on Parliamentary TV or read the main points here