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Help us highlight the hidden costs of delayed diagnosis in myeloma

20th October 2021 // Shelagh McKinlay

As Head of Patient Advocacy at Myeloma UK it is often my job to sit at the table with decision-makers to make sure that myeloma patients, their families and friends are put front and centre and that their experience and needs inform how services are designed and funded.

Often these discussions focus on diagnosis, since improving cancer diagnosis is a key ambition for the NHS across the UK, and vital to survival in many cancers.

At the moment the diagnosis statistics in myeloma stand out for all the wrong reasons:

  • 50% of myeloma patients wait over five months before getting the right diagnosis
  • the average time from first symptom to diagnosis is 163 days, one of the longest times to diagnosis of any cancer
  • 31% of myeloma patients are diagnosed via an emergency route
  • 34% of myeloma patients visit their GP at least three times before getting a diagnosis

I go to meetings armed with these facts to argue the case for myeloma, but each time an incredibly important part of the story is overlooked: what it is like to live with the consequences of a delayed diagnosis.

These discussions rarely look at how patients live after diagnosis or how long. Nobody seems to be talking about how a delayed diagnosis of cancer affects quality of life. That is, nobody except the myeloma patients, their families and friends we speak to at Myeloma UK.

People are often shocked when I talk about conversations I’ve had with patients who have experienced spinal fracture, compression, or curvature, or needed dialysis due to kidney damage. Attending these meeting, it’s become clear that very few people in the policy world seem to know that myeloma, if left untreated, can lead to losing inches from your spine and spending time in a wheelchair or back brace.

This has made us realise that we need more and better evidence about this if we are going to get quality of life impact to become part of the diagnosis conversation. At the moment, most diagnosis policy is driven by the link between the stage at which a cancer patient is diagnosed and the impact this has on survival outcomes. Solid tumour cancers like breast and bowel use staging systems to indicate how far cancer has spread. For myeloma, staging is a way of describing the volume and extent of the myeloma rather than where it is because it is often already widespread at diagnosis. In myeloma, survival outcomes are determined not only by the stage of cancer but also by various markers of disease (prognostic factors), as well as individual host factors (age, overall health). The impact of delayed diagnosis on quality of life is really important in myeloma and needs to be more of a priority.

We are therefore funding a research project looking at the impact of delayed diagnosis and we are asking patients, their families and friends to play a key part by completing our survey, launching today.

We want to hear about your diagnosis experience and how it may have affected your quality of life. We want to hear from you, whatever your experience – good or bad. We need to know the good experiences too so we can help judge whether and how delays might make things harder.

We also want to hear from family and friends who sadly may have lost someone to myeloma, since too often patients who were diagnosed too late must rely on loved ones to tell their story.

Finally, we know that many myeloma patients have a good quality of life. We also know that, over time, patients and their families adjust to the changes and limitations that myeloma causes.

However, for this survey we are asking you to really spell out the impact that myeloma has had, without the adjustments to expectations and experience that is often necessary. We want our audience to fully understand the challenges that patients and those supporting them must cope with.

We hope to get as many responses as possible. The stronger our evidence the stronger our case. We hope you can help us to highlight the hidden costs of delayed diagnosis to the people who can bring about change.