All myeloma patients have been advised to shield for 12 weeks to protect themselves from COVID-19. At Myeloma UK, we recognise this may cause psychological and emotional stress for many patients and their families and those with related conditions.
Our Myeloma Infoline (0800 980 3332, UK or 1800 937 773, Ireland) and Ask the Nurse email services remain open from 9-5 pm, Monday-Friday. Since the Stay at Home order was issued on 23 March, the demand for our services has increased. For example, the use of our email service has almost quadrupled. We responded to this increase with additional staffing, to support these services, and we are well equipped to continue to provide information, support, practical advice and a listening ear to myeloma patients and their families, and those affected by related conditions. We hope that this will help reduce the burden on NHS staff as they face extreme pressures and would encourage staff to highlight these services where appropriate.
The Myeloma Discussion Forum remains open for all patients, families and carers to discuss the challenges faced during this time, as well as to exchange tips and thoughts on how to best manage the coming weeks and months.
Due to closure of the Myeloma UK office, we are no longer able to send out hard copies of our publications to patients, families or hospitals. However, all our publications are available online and can be downloaded here.
Further to this, the next edition of Myeloma Matters will be a special Spring/Summer edition available to download only. It will feature patient and carer perspectives throughout the COVID-19 pandemic and an interview with our new CEO. The next edition of AL amyloidosis Matters has been postponed and we will be updating you with news on this in the coming months.
Many of the Support Groups in the UK have postponed their face-to-face meetings for the foreseeable future and this may impact myeloma patients, their families and those affected by related conditions. Some of those Groups are using digital formats to keep in touch (i.e. through WhatsApp) and it is well worth contacting the person leading the Group (see our website) to get connected with the Group.
We are also finalising the content for the Myeloma Support Group e-newsletter and hope to have the issue released in May. Unfortunately, we are unable to produce the third issue of the AL amyloidosis Support Group e-newsletter at this time and will provide a bumper issue later this year.
Finally, our Spring and Summer Patient and Family Myeloma Infodays have been cancelled. At present, it seems that social distancing will last for a considerable time. We understand patients and their families and carers are wary of being in the same space with many others due to increased risk of infection, so we are monitoring the situation closely. We will share the details of our plans for our Autumn and Winter events as soon as we can.