Delayed myeloma diagnosis is causing life-altering complications, charity warns

Half of myeloma patients in Scotland have been left with “life-altering” conditions such as spinal fractures and kidney failure due to delayed diagnosis, a charity has found.

Myeloma UK’s report, A Life Worth Living, found half of patients received a late diagnosis.

And 49% of patients living with the incurable blood cancer suffered a high impact on their quality of life because of missed diagnosis, while 34% experienced debilitating spinal fractures.

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The charity is now calling on the Scottish Government to make quality of life a key part of the upcoming cancer strategy.

Myeloma is one of the hardest forms of cancer for experts to identify. (Pic: Getty Images/iStockphoto)

Shelagh McKinlay, the charity’s acting director of research and patient advisory, said the delays caused “irreversible” damage.

About 457 people in Scotland are diagnosed with myeloma, which occurs in the bone marrow, every year and delayed diagnosis is more likely in younger patients.

While it is one of the hardest cancers to diagnose, there are currently no targets or time frames for myeloma to be caught early or within a reasonable amount of time, according to the charity.

Ms McKinlay said: “The quality of life of people living with myeloma has never been more important, with advances in treatment meaning that patients are 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 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 cancer strategy on the horizon, now is the time to put quality of life at the heart of Government policy.

“The Scottish 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.”

It is likely that delayed diagnosis has been exacerbated by the Covid-19 pandemic which could result in a surge of patients suffering one or more serious complications as a result.

A Scottish Government spokesperson said: “The NHS remains under sustained pressure as a result of Covid-19, with the number of people awaiting diagnostic tests now at the highest level since 2018, and we are working tirelessly with health boards to provide vital services.

“We continue to see an increasing number of cancer referrals and our priority is to ensure these people receive cancer diagnosis and treatments safely, and based on their clinical urgency.

“Ten million pounds of additional funding was directed to support cancer waiting time improvements in NHS Scotland across 2021/22, with a further £10 million for 2022/23.”

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