Emily Ross
On the 24th February 2016, I attended the Transforming Care After Treatment (TCAT) conference in Glasgow. TCAT is a programme of work in Scotland supported by the Scottish Government, NHS Scotland and Macmillan Cancer Support, comprised of local projects across the country. TCAT’s work aims to improve current systems of cancer service provision, through recognition that care should not stop after diagnosis and treatment. Many patients require ongoing support, for example in terms of emotional needs, practical help, and advice on coping with long-term after effects of cancer treatment.
The conference opened with a discussion of the enthusiasm that has been shown for TCAT by practitioners thus far, and the need to sustain this momentum to turn the ambitions and hopes of those involved with TCAT into practice. It is hoped this will improve patient experience, which in the current system of a ‘one-size-fits-all’ approach, has the potential to leave patients feeling isolated and abandoned. It was also noted that current practice is not sustainable due to the changing landscape of cancer experience, in terms of a growing number of people living with cancer, and increasing constraints on the National Health Service. The audience also heard from Bill Martin, a representative from TCAT’s cancer experience panel (CEP). Bill described how the CEP contribute to TCAT by monitoring patient, carer and service user involvement in the programme, and sharing their expertise in care after cancer treatment.
Following introductory presentations, I attended a session focusing on the role of the third sector (comprising not-for-profit and non-governmental organisations such as charities) in supporting people following the completion of their cancer treatment. We heard from Lucy Whiteman, from CLAN cancer support and also from Angela Harris, from Breast Cancer Care. Both described the services offered by their organisations to individuals following cancer treatment – for example, breast cancer care offer a ‘Moving Forward’ four week course to those who have experienced breast cancer. This provides women with space to discuss coping strategies, healthy living, and body image. Angela presented an image to represent how women may feel during their ‘recovery’ from breast cancer, and based on my reading, I thought suitably reflected some women’s experiences of uncertainty and fear of reoccurrence following treatment for breast cancer:
Both speakers emphasised that the emotional impacts of cancer do not stop following treatment, and care should therefore be ongoing.
I was interested that despite focussing on post-treatment wellbeing, neither of the speakers used the terms ‘survivor’ or ‘survivorship’. Though used in Macmillan’s materials and particularly associated with the ‘breast cancerisation’ of post-treatment experience, this language was notably absent from the conference. This may be to do with resistance from those affected by cancer to using this term. For example, one sociological study from the US found that “the survivor discourse alienated women who struggled with the threat of recurrence, who felt their cancer experience was not severe enough to merit this title, or who desired a private disease experience”. One delegate at the conference told me that this language had the potential to ‘aggravate’ those affected by cancer. I reflected on the work of Kirsten Bell, who has written about how ‘survivorship’ is tied in with conceptualisations of cancer as a ‘war’ or ‘battle’, and the implications of this language of those who cannot, or do not want to, fight the disease. Though many do identify as being as ‘survivor’ of cancer, the rejection of the label by some exemplifies the need for TCAT’s vision to personalise post-treatment care in Scotland, and ensure service provision flexibly meets individual needs.
Following a presentation to the audience from Dr Aileen Keel, who described moves towards stratified approaches to cancer follow-up, in terms of the level of contact individuals would like with health services post-treatment, I attended another session which considered the use of online services to support self-management. This session featured a talk from Kevin Hutchison, who is helping to develop a service to allow people to select and save online information, creating a set of resources tailored to the individual, and store this in their own personal online profile. They will also be able to more easily access information about local services and support using the tool, called ‘info for me’. This is part of the TCAT initiative to empower patients, and contribute to a more personalised care after treatment. We also heard from Alliance Scotland, an organisation that supports those who are disabled or living with long term conditions. They presented the results from a survey they had conducted regarding the role of social media in self-management of long term conditions. The survey found that engagement with social media and online resources allowed easy access to peer support, reduced feelings of isolation and increased confidence in accessing health services. These findings echo some sociological literature regarding online ‘illness communities’, which have found that creating relationships with others, and feeling supported, are some of the benefits voiced by those using the internet in this way. This is particularly relevant to the strand of our project which considers ‘public patienthood’. Here we will explore online accounts of cancer, cancer care and cancer research including individuals’ experiences of research participation, and the role of online communities.
The conference galvanised those present, and gave me a renewed appreciation of the hurdles faced by those affected by cancer throughout the cancer trajectory. The illness has impacts beyond the physical, and an appreciation that these will vary between individuals and over time is beginning to shape cancer service provision in Scotland. The concept of ‘stratified’ post-treatment care, which is also being discussed in the realm of biomarker surveillance, and of course personalised screening pre-disease, is of interest to our Wellcome Trust project. It seems the notion of being a patient, and the extension of patienthood into pre- and post- disease, is becoming constantly reconfigured in the post-genomic era, not only in terms of clinical treatments, but also in terms of holistic care and support.