Don’t miss myeloma: Myeloma UK policy paper identifies key areas for action to improve diagnosis

Patient advocacy news // 22nd June 2021

Myeloma UK today set out its vision for shortening the time myeloma patients wait until correct diagnosis, seeking to bring the time between diagnosis to treatment in line with other cancers.

Currently, 50% of myeloma patients have to wait over five months before getting the correct diagnosis, and almost of a third of all patients are only diagnosed after presenting as an emergency, often suffering from life-limiting complications such as kidney damage and spinal compression.

The Myeloma UK Policy Position Paper for NHS England identifies the current policy gaps that exist and seeks to finally put myeloma into the NHS Long Term Plan (LTP) for cancer, alongside other tumour-based cancers.

The current NHS LTP works towards a goal of diagnosing 75% of all cancers at stage one or two by 2028 to improve survivability rates. Because of the way myeloma develops, catching it early impacts not just on survival but also longer-term quality of life – critical measurements for a cancer that becomes active and goes into remission multiple times in a patient’s lifetime.

The Policy Paper’s key recommendations are:

  • New measurement and benchmarking of myeloma diagnosis and treatment to reduce diagnosis via emergency route and monitor the impact on patient quality of life of a late diagnosis
  • Patients to be allowed to self-refer to Rapid Diagnostic Centres, with centres better collecting data on myeloma in order to benchmark performance and progress
  • Education and support for GPs to accurately suspect, test and refer patients with suspected myeloma
  • Investment in the latest genomic testing and monitoring of precursor conditions, to better anticipate the development of myeloma

Commenting on the paper’s release, Chief Executive, Laura Kerby, said:

Myeloma is an incurable cancer, but the sooner we correctly diagnose it and begin to treat it, the better the length and quality of life is for patients. As the NHS LTP currently stands, the metrics it bases performance and policy recommendations on don’t fit a blood cancer like myeloma. This means that we don’t feature on the policy radar and we fall further and further behind more common, tumour-based cancers in improvements.

Every cancer patient deserves the best chance to stay with their loved ones for as long as possible. Removing the barriers to making a timely, correct diagnosis is critical and people with suspected myeloma do not have time to wait.