Busting the myths about palliative care

The Mesothelioma UK Research Centre at the University of Sheffield has produced an animation aimed at people with mesothelioma and their families. It will also be of interest to anyone who is becoming progressively disabled by an asbestos related disease. It looks at common misconceptions about palliative care.  In particular, it aims to dispel the…

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Ipi/Nivo Immunotherpay Approved by NICE

A year on from its first committee meeting to consider this, NICE has finally approved immunotherapy combining Nivolumab and Ipilimumab for the first line treatment of mesothelioma by the NHS. This treatment is commonly known as Ipi/Nivo. NICE is the National Institute for Health and Care Excellence. What’s the best treatment? Patients often regard immunotherapy…

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If you have asbestosis , pleural thickening or pleural plaques, we want to hear from you!

Dr Gareth Walters, Clinical Director of the Birmingham Regional NHS Occupational Lung Disease Service (hosted by University Hospitals Birmingham NHS Foundation Trust) is looking for patients with the following asbestos related conditions: Pleural plaques Visceral Pleural thickening Asbestos pleurisy Asbestosis to talk about their thoughts, beliefs and experiences on living with asbestos related disease, and…

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My journey with mesothelioma

I first went to my doctors’ in October 2018. I was told that my breathlessness on walking uphill was normal for my age. But in February 2019 an x-ray revealed fluid on my left lung. Three months later I had the fluid removed in the Royal Stoke Hospital. A biopsy confirmed my diagnosis of mesothelioma.…

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Nintedanib: New hope for asbestosis patients

Our cells (including those in the lung) are subject to damage from infections and other abnormal materials (including asbestos). When the repair process is upset or altered in some way this can lead to a change in the structure of the tissue, which we call “fibrosis”. How asbestosis affects patients Some people with asbestosis develop…

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Misleading pledges to tackle cancer

The government has been accused of repeating existing pledges to create an illusion that it is  ‘doubling down on cancer’. The prime minister used a visit to a cancer centre in Kent to announce two ‘new’ care standards to ensure that patients with cancer get diagnosed more quickly. His first pledge was that 75% of…

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Your diagnosis is the start of a journey

Being diagnosed with an asbestos related disease is likely to change your perspective on life. Things that used to matter may no longer seem so important. The relationships and everyday things you took for granted may now take on new value. Understanding what your body needs You will find out what really makes you tick.…

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NICE offers new hope for patients with asbestosis

For the first time, patients and their doctors will no longer need to choose between trying a new medicine which has the potential to extend their life and the alternative of claiming Industrial Injuries Disablement Benefit and a lump sum from the Workers’ Compensation Scheme. Drugs which slow the progression of pulmonary fibrosis were previously …

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Coping with a life-changing diagnosis and setting your own goals

Writing on mesotheliomahelp.org, nurse specialist Lisa Hyde-Barrett reminds us that being diagnosed with an asbestos related disease is life changing. Patients handle this differently. Everyone is unique and so there is no right or wrong way. She says, ‘We must allow ourselves or our family members to feel their fear, or anger, or whatever emotion…

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Coping with the stress caused by asbestos

A recurrent theme when we first speak to new service users is stress. The diagnosis often comes as a shock. People are frequently stunned to realise that they have been exposed to asbestos or that it has caused them harm, often many years afterwards. Once the news has sunk in, there is then the everyday…

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