At least 136,000 cancer patients not getting help they need, warns Macmillan

Thousands of patients with incurable but treatable cancers are not getting the support they need, according to new research.

A study by Macmillan Cancer Support, published on Monday, found that there were at least 136,000 people in the England are living with a chronic form of cancer known as “treatable but not curable” cancer that can be managed but very rarely cured.

The new research also found that more than three quarters of treatable but not curable patients were not getting the emotional or physical support they needed with issues related to their cancer.

The charity said that this could represent more than 100,000 people in the UK, who due to the complexity and uncertainty of their conditions are likely to face significantly higher levels of anxiety, fear, pain, sleep problems and fatigue.

This is often the need for constant tests, appointments and procedures to monitor the disease, prolonged treatment to extend life and an “all-consuming unpredictability about the prognosis”, it added.

The charity’s director of policy, campaigns and influence Dr Moira Fraser-Pearce said this showed that the current NHS workforce was “not fit for purpose”.

She added: “The fact that 77% of people with treatable but not curable cancer across the UK feel that they are not getting all the support they need is case in point that the current NHS workforce, despite the best efforts of hard-working professionals, is not fit for purpose.

“With treatments continuing to advance and people living longer with ‘chronic’ cancers, governments across the UK must ensure people living with cancer, including those with treatable but not curable cancer, can add quality, as well as years, to their lives.”

The research found that people living with treatable but not curable cancer included people:

  • whose cancer was already advanced, stage four, by the time they were diagnosed,
  • living with an incurable blood cancer such as myeloma,
  • living with mesothelioma (a type of cancer usually linked to asbestos exposure), and
  • living with other types of cancer that were diagnosed at an early stage but have advanced to an incurable stage.

Macmillan Cancer Support said that with the right support people with treatable but not curable cancers should be able to live their lives as fully as possible.

But it said the lack of support was made worse due to the workforce challenges facing health and care services with overstretched staff often not having the time or resources to provide the personalised care these patients urgently need.

The charity warned that the changing nature of cancer and complexity of conditions like this is why it is vital there are enough NHS staff with the right skills and right resources to provide the personalised care patients need and deserve right now and in the future.

Its specialist adviser for workforce engagement Nikki Cannon said that the needs of people living with treatable but not curable cancer were “many and complex” including the physical impact of long-term treatments like fatigue, dietary issues and pain control as well as the “psychological difficulties of living with the uncertainty of an incurable illness”.

She added: “People are living longer with ‘chronic’ cancer, their needs are becoming more complex and healthcare professionals need training to keep up.

“This involves advanced communications skills to handle difficult conversations and understanding of the latest treatments and management of side effects.

“However, the experts and compassionate workforce who want to provide personalised care for this group simply don’t have the capacity or resources to do so at present.”

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