Myeloma UK has urged ministers to prioritise quality of life in its care.
A new report has warned delayed diagnosis is having a hidden impact on the quality of life in patients living with incurable blood cancer in Scotland.
Research for charity Myeloma UK has led to calls for quality of life to be a key part of the Scottish Government’s upcoming cancer strategy.
The report, A Life Worth Living, warns half of myeloma patients have been left with life-altering spinal fractures and other avoidable complications after their cancer was repeatedly missed.
At present, around 2,000 people are living with myeloma in Scotland - with debilitating complications including broken spines and kidney failure, as well as complex mental health issues reported.
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 per cent waiting over five months.
The charity also found 34 per cent of myeloma patients visit their GP at least three times before getting a diagnosis, while 31 per cent are diagnosed via an emergency route.
These are some of the longest delays out of any cancer in the UK, with Myeloma having a significantly greater impact on black patients and patients from ethnic minorities compared to white patients.
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.
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, the charity said.
Acting director of research and patient advocacy, Shelagh McKinlay, said: “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 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.”