Shining a light on myeloma
Hannah Parkin, HCP Senior Project Officer
2nd July 2019
Myeloma is the 3rd most common blood cancer with around 5,700 new cases diagnosed every year in the UK. Although more common in older people, a quarter of myeloma patients are diagnosed under the age of 65.
Myeloma patients experience some of the longest delays to diagnosis of all cancer patients, with a third of patients being diagnosed as a result of emergency admission. Early diagnosis, via GP referral, is associated with improved one-year survival compared to emergency admissions (88% vs 62%, respectively) and can prevent some of the most severe presentations of myeloma, such as acute kidney failure and spinal cord compression. This is why, at Myeloma UK, we’re working hard to push for the timely diagnosis of myeloma using a number of approaches.
Bringing together experts to identify and address key barriers to diagnosis
In 2017, we set up the Myeloma UK Early Diagnosis Programme to better understand the barriers to an early diagnosis of myeloma. This programme centres on a number of projects developed with advice and input from our Early Diagnosis Steering Committee (a team of consultant haematologists, immunologists, nurse specialists and primary care representatives). Projects include: increasing education and engagement with both primary and secondary care healthcare professionals; exploring the use of artificial intelligence/mathematical modelling in a primary care setting; and investigating how communication between primary care, secondary care and the laboratory can be improved.
Raising awareness in primary and secondary care
The average time to a myeloma diagnosis is 163 days, with the primary care interval being significantly longer than other cancers. Myeloma can be difficult to spot due to the relative rarity of the cancer and the non-specific nature of presenting symptoms – often linked to ‘old age’ or benign conditions. Once suspected, knowing which blood tests to request gives GPs the ability to start the diagnostic process.
We are encouraging all GPs to refresh their knowledge of the signs, symptoms and initial tests for myeloma as outlined in our Myeloma Diagnosis Pathway (available to order in print, downloaded from our website or as an interactive digital tool). We aim to reach as many primary care professionals as possible by developing educational materials in collaboration with leading educational partners such as the RCGP (5 min myeloma screencast) and Macmillan (Ten Top Tips sheet).
The masking of underlying myeloma by symptoms of other conditions means patients can find themselves repeatedly referred to, and between, different hospital specialties. This is why it is also important that we support the education of secondary care professionals through the hosting of Myeloma Grand Rounds by haematologists using slides prepared by our Steering Committee (available on our website).
Support for all
We are always looking for GPs to input on our Early Diagnosis Programme, so please get in touch if you are interested in helping us improve the timely diagnosis of myeloma. To hear more about work see our website or email us at firstname.lastname@example.org.
As well as supporting healthcare professionals we also provide support, information and advice for myeloma patients and family members. Our free Myeloma UK Infoline is open 9am-5pm, 5 days a week on 0800 980 3332 (UK) or 1800 937 773 (Ireland) or by email at email@example.com.