Despite the huge emotional burden of a cancer diagnosis, many patients and survivors are missing out on vital mental health support when coping with the illness and its aftermath.
According to a 2014 study, 54.1% of cancer survivors need help managing concerns about their cancer coming back. Another study suggested that it’s common for cancer survivors to experience some symptoms of PTSD such as nightmares, avoidance, hypervigilance and negative self-perceptions. Despite this, not all cancer survivors are receiving mental health support to help them deal with a potentially life-threatening diagnosis.
As a three-time cancer survivor engaging with the online cancer community about this topic, I recently Tweeted the question:
Cancer patients and survivors, I’m curious about how much your medical team spoke to you about your emotional and mental health, particularly after treatment. How prepared were you for the emotional impact of cancer? #cancersurvivor #AYA
— writer sam (@writersamr) November 13, 2020
I was overwhelmed by the number of responses my Tweet received in just a few hours. Experiences varied, from patients not being informed at all of the mental health support available, to being given leaflets or names of resources, being referred for counselling upon request, or being provided counselling without needing to ask. The number of people that fell into the first category was concerning – though for me as a cancer survivor, unsurprising.
Feeling Unsupported and Unprepared
57.28% of respondents (122 of 213 people) told me there had been little or no focus on their mental health from their medical team. 93 (43.66%) stated that mental health support had never been mentioned:
“Dealing with the PTSD is going to be a long road but not one of my MDT has asked how my mental health is.” – Anonymous Tweeter
Only six people mentioned that they had been warned or that they felt prepared for the emotional impact of cancer, while 26 (12.21%) said they were not prepared at all.
However, 26 respondents (12.21%) said they were offered mental health support or referred to someone who could help them and seven (3.29%) said they received support when they asked for it.
There is also a question of when is the right time to receive support, with some respondents saying they may have found it more helpful to have counselling after treatment rather than during. Some responses indicated that mental health is still a concern years later, further implying that this support is important for patients both during and after treatment and should not be neglected at any stage.
Actively Seeking Mental Health Support
Of those who were offered little to no mental health support, 15 (7.04% of total) said they sought professional support elsewhere from private counsellors or organisations such as Maggie’s or Shine Cancer Support. Three mentioned receiving support from friends or family. This suggests that emotional and mental support is a need that cancer patients have, even if it isn’t always met:
“If it wasn’t for my local Maggies centre, I’m not sure how I would’ve coped. Almost 3 years from diagnosis and some days are still a battle.” – Anonymous Tweeter
Patients who ask for counselling may get the mental health support they need, but for some it may be unclear who to ask or where to go for support and it may not even be apparent that help is available or that it’s normal to feel you may need it. One reply pointed out that where mental health support is offered, it is not always integrated directly into routine care or provided as standard – which means if it isn’t properly signposted, patients may not know it’s available.
Coronavirus has added another layer to the issue, with some respondents drawing attention to the problem of support groups no longer meeting during the pandemic, eliminating a valuable resource.
The Need For A Consistent Approach
Responses to my question came from a variety of countries including the UK, the US, Canada and Australia. As there is no clear pattern from the responses, this suggests that access to mental health support for cancer survivors can vary greatly within many countries and that a lack of support is a problem not exclusive to the UK. It’s important that all cancer patients and survivors are provided with the mental health resources they need, to avoid a postcode lottery for those struggling to cope with the emotional effects of cancer survivorship. With NHS resources already stretched, a consistent approach to tackling the conversation around mental health could be beneficial for many.
In fact, a simple act of validation could be greatly helpful. Patients may feel more supported if healthcare professionals acknowledge that emotional issues may arise and reassure the patient that this is normal.
Whether support is provided through validation of feelings, providing leaflets, signposting charities or providing referrals to mental health services within the NHS, it’s essential that all cancer patients and survivors have access to the same support and know where to turn if they need help.
While my initial question was broad with a relatively small sample of respondents, the amount of interest it gained in just a few hours strongly indicates there is a problem with cancer patients and survivors not being provided with the mental health support they require. Further, more focused research could provide a wealth of information about patient experiences and greater insight into how medical professionals can meet patients’ mental health needs.