Cancer patients left to cope with mental health problems alone
The mental health problems that arise as a result of cancer are too often sidelined according to our new study.
One in three people with cancer will experience a mental health problem such as depression or anxiety disorders before, during or after treatment.
A cancer diagnosis, its associated symptoms and treatment can have a significant emotional impact on people and their families, with fear, isolation, loss of self-esteem and loss of independence having an impact.
However our new study has found that mental health problems often arise at the very end of cancer treatment, when patients normally expect to recover, with little or no emotional support at hand.
Half of the service users we interviewed stated that they reached an emotional 'false summit' at the end of their treatment. This was due to the often unexpected psychological distress created by cancer, stemming from the life changing experiences of cancer and cancer treatment, and also to the lack of available support for mental wellbeing.
Once treatment stops, and people leave strictly managed clinical environments, survivors describe feeling as though they had 'fallen off a cliff edge'. The sudden loss of support often leaves people feeling isolated and abandoned at a time when support is needed the most.
Of people we interviewed, 49% of people interviewed by the charity said they received no support or advice from health services about managing their mental health through cancer, while 66% said they were not informed at all about potential mental health problems that could arise at the end of treatment.
Asked about the kind of support that would have improved their mental wellbeing during and after treatment, over 60% said one to one counselling; 42% said better access to information; 30% said peer support groups; and 51% said better communication from service providers.
We are today calling for person-centred support to be available at all stages of cancer, from diagnosis to post-treatment and beyond. Although there is increased recognition of the impact of mental wellbeing during cancer, the support network is often patchy and inconsistent across Scotland.
The links between mental health and cancer have had received extremely little research attention over the years.
Lee Knifton, Head of Mental Health Foundation Scotland said:
"Cancer is not just a physical illness, it can have a profound psychological impact and people expect to receive both physical and emotional support when they need it.
"Our research shows that too often people are left in the dark about cancer’s impact on mental health. But if people are given the right support at the right time they would have greater control over their emotional wellbeing as they go through cancer.
"The post-treatment phase of cancer is an especially volatile time for people’s mental health, yet people receive the least support at this stage. The ‘false summit’ that people describe is testament to the lack of support and discussions about mental health.
"People shouldn’t be left to cope with emotional distress on their own. Cancer affects people in different ways and once treatment is finished, many people struggle to return to normal. That’s why person-centred support is so important. One to one counselling and peer support groups can help people overcome their fears and anxieties and help them feel more in control of their lives.
"If support is offered effectively at an early stage it can prevent anxiety and depression developing into severe, clinical conditions. That’s why today we are calling for tailored, person-centred support to be offered through all stages of a cancer journey."
William Steele from Ayrshire, who survived breast cancer said:
"One of the abiding themes of having breast cancer and being a man was the amazement of so many people when I told them – as if I were something different to all other men. This took its toll, particularly when trying to explain my circumstances to my colleagues or friends – it wasn’t easy.
"I was affected by anxiety at various stages of my cancer, including pre and post diagnosis.
"After treatment was over, I did feel, strangely, a certain loss when I didn’t have to go to hospitals and doctors so often. Once your cancer treatment finishes everything finishes – you feel lost and abandoned.
"The consequences of the treatment were horrific. Many people assume that once the cancer is treated things go back to what they were. But many people live with the consequences of the treatment which are sometimes huge.
"One-to-one counselling services provided by a local charity certainly did help to overcome the trauma that I had been through but I had to access that service myself. Only years later was I offered access to psychologists in Ayrshire and Arran.
"People have different emotional support needs at different times during their cancer journey and we need to do more to help people at every stage of cancer."
The Mental Health Foundation’s recommendations include:
- tailored, person centred support offered at all stages of the cancer journey
- greater collaboration and communication between service providers
- improved signposting for mental wellbeing services
- clearer and co-ordinated support pathways after treatment
- further research into how best to tackle social deprivation and co-morbid health inequalities.