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The purpose of the CML Support Group
Originally established in 1999 by two patients diagnosed with PH+ CML, the website was launched in April 2000 in order to reach a wider community of patients diagnosed with CML in order to provide support, advice and up to date information about the disease and its treatment options. We are the UK’s only charity with an exclusive focus on people diagnosed with Ph+ Chronic Myeloid Leukaemia and run by patients on a voluntary basis.
Part of our support is on the psycho/social issues of the patient experience, a provision that is often lacking given the requirement for health professionals to address the complex clinical aspects of CML. We therefore see our role as an essential supplement to good professional health care.
We also represent UK based CML patients during drug reimbursement appraisals at national, government-sponsored meetings as well as in all matters affecting treatment options that originate from the EU and its institutions. The CML Support Group takes an active role in a wide range of consultative bodies throughout the NHS.
It is widely recognised that informed patients make informed choices and we champion the objectives of the DoH sponsored 'The Expert Patient Programme' (EPP). Based on research from the US and UK over the last two decades, the EPP shows that people living with chronic illnesses are often in the best position to assess their needs for better management of their condition. The provision of ‘self-management' skills directly to patients shows real benefit to the patient's quality of life and supports the immediate family more generally.
Informed patients have a tangible impact on their health, with an enhanced ability to gain access to the most appropriate and effective therapies. Our aim is to encourage every CML patient and their care partner to self-educate through the provision of information on our website about CML and its current optimal therapeutic and management options. This enables patients to take a constructive role in planning their treatment pathway allowing an equal share in decision-making with their doctors and healthcare teams.
Like all successful patient groups, The CML Support Group works alongside healthcare professionals to help patients get the best and most appropriate care possible.
CMLSg maintains links with other patient groups worldwide with a board of three trustees and is an independent organisation. We are a UK registered charity and a NICE stakeholder.
CML Support Group is a registered charity in the UK: 1114037