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The CML Support Group is the UK’s only patient group focusing exclusively on people diagnosed with Ph Chronic Myeloid Leukaemia. Our website was started in 2000 by patients and carers to provide support, advice and information to people diagnosed with Chronic Myeloid Leukaemia. The CML Support Group is an independent organization, a registered charity and a NICE stakeholder. Our Aims: The CML Support Group has a number of objectives. One is to make sure all newly diagnosed CML patients receive the CML Support Group leaflet “You are not alone” when they are first diagnosed so they are aware of our group and our website. Part of our focus is towards the psycho/social issues of support that professional healthcare workers often lack the time and resources to provide given the immediate focus on the complex clinical aspects of CML. We see our role as an essential supplement to good professional health care. In addition we represent UK CML patients during drug reimbursement appraisals at national, government-sponsored meetings. We also represent CML patients in all matters affecting their treatment that originate from the EU and its institutions. The CML Support Group champions the objectives of the DOH sponsored The Expert Patient Programme (EPP). The EPP is based on research from the US and UK over the last two decades, which shows that people living with chronic illnesses are often in the best position to know what they need in managing their own condition. Informed patients make informed choices. Providing patients with the necessary 'self-management' skills shows benefit to the patient's quality of life and also supports their immediate family more generally. Informed patients and carers are more able to make a tangible impact on their disease and are more able to access the most appropriate therapy. We aim to encourage every CML patient to become an informed patient by providing information about the disease and its current therapeutic and management options. We believe informed patients are more likely to survive because they are able to take a constructive role in planning their treatment pathway. This allows them an equal share in decision-making with their doctors and healthcare teams. The CML Support Group take an active part in a wide range of consultative bodies throughout the NHS. These range from local to national level organisations and wherever we can improve the interests of people living with CML. Like all successful patient groups, The CML Support Group works alongside health care professionals to help patients get the best and most appropriate care possible. If you would like more information about the CML Support Group, please visit our website at www.cmlsupport.org.uk. The website has open access. Registration is not required to view its content.


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