Feedback from the regional meeting for people with pleural thickening and asbestosis
- Patients feel their questions, about how their disease might progress, are often left unanswered.
- Patients would like to see more research into whether or not there is a significant risk that people with other asbestos related diseases will go on to develop mesothelioma.
- Patients with pleural thickening are left feeling anxious and unsupported (‘at sea’). They are often discharged from specialist care or monitored only once a year.
- Seeing imaging of their lungs and having the abnormalities explained to them helps patients understand their illness.
- Better patient information leaflets would be helpful.
- Patients feel they did not have enough time with their doctor to get across the issues they are facing.
- Patients are not getting useful advice, empathy and support from their local GP surgery.
- Legal advice is often given with more empathy and support and lawyers are sometimes better than the NHS at explaining health related issues.
- Patients appreciated the patient support group which ASCE used to offer before the pandemic and would like to see it restarted.
We are exploring, with Dr Gareth Walters who conducted the study, how to restart the patient support group and provide better information to patients. Please watch this space.