Almost half of cancer patients in east of England not told about treatment side effects, charity finds

PUBLISHED: 16:06 31 August 2017 | UPDATED: 16:06 31 August 2017

Macmillan. Pictures: MICK HOWES

Macmillan. Pictures: MICK HOWES


Nearly half of people diagnosed with cancer in the east of England were not fully told about the potential long-term side effects of their treatment, it has been revealed.

Laura Hughes walks alpacas in a story for the Mustard Show. Picture: Archant Laura Hughes walks alpacas in a story for the Mustard Show. Picture: Archant

Analysis of the Cancer Patient Experience Survey for England by charity Macmillan Cancer Support found 46.2pc of those in our region who were told they had the disease did not feel they were told enough about the potential long-lasting impact of treatment, which can include incontinence, infertility or heart conditions.

And the findings prompted a warning from Macmillan as if patients are unaware, side effects can be left untreated and worsen.

The survey also showed more than one in four people with cancer in the east of England did not receive easy-to-understand written information about the type of cancer they had when they were diagnosed.

And 26.4pc said they did not completely understand the explanation of what was wrong with them.

Macmillan head of service for the south and east, Gwyneth Tyler said: “It is simply not good enough that people are being given a devastating cancer diagnosis and then on top of that, they’re left feeling unprepared to deal with it. It is vital that patients come away from their appointment fully understanding their diagnosis, more in control of what is happening and what they might have to face.

“People must also know what support is available to them to cope with the many ways cancer can affect their lives. This can range from their treatment decisions to handling finances or talking to their employer. If people feel informed enough, it could also ease the pressure on the NHS to get early help for cancer-related issues.

“We have been working and we will continue to work with patients and partners such as the local NHS, hospitals, councils and GPs in the east of England to improve the lives and experiences of millions of people living with cancer.”

However, one Norwich woman who is battling incurable cancer said the care she had received had been second to none.

Laura Hughes, 29, said: “I was told from the word go exactly what was going on and what the side effects could be, I had a big sheet listing them all. And I know from friends I’ve met through having cancer that they’ve experienced the same.”

A Norfolk and Norwich University Hospital (NNUH) spokesman said: “NNUH is one of top ten cancer centres in the country, seeing 6,000 patients a year and offering a full range of surgery, chemotherapy and radiotherapy services all in one place. We offer first class services and have made a major investment in expanding our facilities to deal with the increase in demand for cancer treatment and offering patients an improved environment whilst they are undergoing treatment.

“We score highly in this cancer survey with patients scoring us as one of the top trusts in the country in terms of ensuring that patients understood what was wrong with them, plus we score above average in explaining the side effects of treatment.

“The trust is working in partnership with Macmillan to deliver the Macmillan Recovery Package, a new project to improve the support and information patients receive. There is a survivorship team in place which assesses each patient’s individual needs and signposts them to support at key points in their cancer journey. This involves looking at all aspects of the patient’s life and working with them to ensure their physical, emotional and social needs are met.”

James Paget University Hospital deputy medical director Dr Hazel Stuart added: “Our priority is delivering compassionate and safe patient care to all our patients – and the latest data from the Cancer Patient Experience Survey shows that patients at the JPUH continue to rate the overall care they receive very highly (8.7 out of 10).

“This is consistent with the conclusion of inspectors from the Care Quality Commission (CQC), the independent regulator of health and social care service, who rated our service as “good” and found that staff were exceptionally caring and went the extra mile for their patients.

“The survey provides us with a useful benchmark, giving us an insight into how patients feel about all aspects of our service.

“This includes areas where the survey indicates we are doing well, such as making our Clinical Nurse Specialists (CNS) easy to contact so that patients have the reassurance of knowing that expert advice and information is readily available.

“But the survey also highlights areas where we could strengthen our service, for example in some areas of communication. We will now examine its findings in detail to identify improvements that we can make for the benefit of our patients in the future.”

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