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Myeloma UK launches landmark report into the impact of delayed diagnosis on quality of life

Other News // 28th March 2022

Today Myeloma UK is launching the landmark A Life Worth Living report – the very first to investigate the hidden impact of delayed diagnosis on the quality of life of myeloma patients in the UK.

Based on feedback from 1,344 patients and carers, the report lays bare the stark reality of living with myeloma and grappling with debilitating complications as a result of avoidable delays in diagnosis.

From broken spines and bones to kidney failure and complex mental health issues, patients’ lives have been severely diminished and, in some cases, irrevocably altered because their cancer was repeatedly missed.

According to the report:

  • 50% of patients received a delayed diagnosis.
  • 49% of patients with a delayed diagnosis suffered a high impact on their quality of life.
  • 34% had spinal fractures as a result of delayed diagnosis.
  • 60% of patients with a delayed diagnosis reported reduced mobility/physical activity.
  • A delayed diagnosis is significantly more likely in younger patients: 48% of patients reporting a delayed diagnosis were aged 18-64, compared to 35% of people with a timely diagnosis.
  • Myeloma has a significantly greater impact on black patients and patients from ethnic minorities compared to white patients. 55% of black and minority ethnic patients reported a high impact on quality of life compared to 37% of white patients.

Myeloma UK is now calling for quality of life to be a key part of the government’s ten-year cancer strategy – a move backed by MP Clive Betts, who was diagnosed with myeloma in 2017.

Despite being the third most common type of blood cancer, myeloma is especially difficult to diagnose as symptoms, chief among them pain, easily broken bones, fatigue and recurring infection, are often linked to general ageing or minor conditions.

Patients experience significant delays in getting diagnosed, with 50% waiting over five months. 34% of myeloma patients visit their GP at least three times before getting a diagnosis. 31% are diagnosed via an emergency route.

These are some of the longest delays out of any cancer in the UK.

Although it is one of the hardest cancers to diagnose, there are currently no specific diagnosis targets or timeframes for myeloma to be caught early or within a reasonable amount of time. This means there is no way to curb delays, improve diagnosis or patients’ experience.

 

Myeloma UK Acting Director of Research and Patient Advocacy, Shelagh McKinlay, said:

“I would like to thank all the patients and carers who so generously and candidly shared their firsthand experience of living with myeloma and allowed us to gather this vital information and data.

“The quality of life of people living with myeloma has never been more important, with advances in treatment meaning that patients are now able to live longer than ever before.

“Delayed diagnosis is well known to increase the likelihood that patients will experience two or more serious complications. Yet, there are still no specific diagnosis targets to make sure the disease is caught and treated in time and to tackle unacceptable and truly harmful delays. This is doubly unfair since we know outcomes for myeloma are already so poor.

“Whether through severe and chronic pain, spinal fractures, kidney damage and other complications, myeloma patients are being condemned to a life of limitations and pain because they were diagnosed far too late. From the very start, their potential to live well is severely restricted, no matter what treatments they end up receiving – the damage is irreversible.

“With a new ten-year cancer strategy on the horizon, now is the time to put quality of life at the heart of government policy. The government urgently needs to develop targets that improve patients’ experience and put the day-to-day lives of people with myeloma front and centre across research, policy development, commissioning and clinical practice. We cannot and will not allow people’s lives to be diminished by avoidable delays in diagnosis.”

 

Delayed diagnosis is likely to have been exacerbated by the COVID-19 pandemic and could lead to a surge in patients experiencing one or more serious complications as a result.

Already, myeloma has seen the second biggest fall in diagnoses since March 2020, with confirmed cases in England down by 13% compared with pre-COVID-19 expectations. This translates to more than 500 fewer people diagnosed with myeloma in England over the past 18 months than would usually be expected.

Labour MP Clive Betts was diagnosed with myeloma at the age of 67 back in 2017, thanks to a routine blood test. Being diagnosed early not only allowed him to return to work following treatment but to live a relatively normal and pain-free life.

 

The Sheffield South East MP said:

“Early diagnosis is absolutely crucial. Unfortunately, most myeloma patients are not as fortunate as I was and had to wait weeks, even months, for their cancer to be picked up – with disastrous consequences to their health and quality of life. I had no symptoms when my cancer was picked up following a routine blood test after I changed GP in Sheffield.

“This early diagnosis allowed me to receive a stem cell transplant and a course of chemotherapy when I was fit and healthy, which has contributed to a long period of remission. While the treatment was tough it has been worth it.

“All myeloma patients deserve a chance to live as well as possible for as long as possible which is why I support Myeloma UK’s call that quality of life must be central to the government’s 10-year cancer plan.”

 

Read the A Life Worth Living report to learn more about our findings.