Hi Everyone
Thanks for your feedback. We use the term ‘carer’ as this enables us to cover a broad range of people who might be providing any sort of emotional and practical support to myeloma patients but not as part of a professional role.
It is difficult to identify an alternative that would capture everyone who would benefit from specific information or help – this might be friends, family members or others.
We have discussed use of the term ‘carer’ at a number of Patient and Family Infodays and the feedback has been mixed. Some people agree with you that this is not a term they would ever use or like to be labelled with. Others feel that it recognises their status and role within someone else’s myeloma and affords them the credibility to be involved in treatment decisions, care planning and other discussions.
Using ‘carer’ is also consistent with other organisations and can also prompt people to recognise that they themselves are entitled to help and support, for example requesting a GP carer’s assessment or seeking advice / using services available at a local carer’s centre.
We’re very happy to keep this under review and to seek more feedback at Infodays and Support Group meetings and from this Discussion Forum thread.
I hope this is helpful. Thank you for taking the time to give us your feedback on this issue.
Sue Perkins
Service Development Manager
