WE must look behind the sheer relief, says Susanne Cruickshank
Increasing numbers of people are surviving cancer, prompting demands for a new way of thinking about caring for patients after their treatment programmes are completed.
New research is focusing on those who no longer require direct medical care, but may still be troubled by deep-seated anxiety, uncertainty and a sense of abandonment.
It is estimated that more than two in five people in Scotland will develop some form of cancer during their lifetime, and there are more than 200 types.
However, although outcomes can vary, it is predicted that the number of people in the UK living with a previous cancer will increase from two million to four million by 2030.
Key to this progress has been the emergence of new treatments, and health professionals working together to change the way they diagnose, treat and manage cancer, improving survival outcomes further, but we cannot ignore the consequences on an individual’s life, family, friends, hopes and aspirations.
More and more people with cancer describe feelings of vulnerability and abandonment as their treatment finishes and often seek support.
One woman reflected: “I have now finished surgery, chemotherapy, radiation, I‘m done, according to the medical profession.
“But I don‘t really feel done… We just move from the quantifiable, treatable disease to the immeasurable uncertainty of survivorship.”
There is overwhelming evidence that this uncertainty can impact on day to day activities that many of us take for granted, leaving a person with low levels of confidence.
For others, dealing with fears of the cancer returning, expectations of others that life should be “back to normal” and adjusting to changes in their physical and emotional state, can seem overwhelming.
The Transforming Care after Treatment (TCAT) programme is a partnership between the Scottish Government, Macmillan Cancer Support, NHS Scotland, local authorities and third sector organisations that seek to improve the after care and support for people living with and beyond cancer.
The five-year programme is designed in three phases, and 25 projects across Scotland, from Dumfries to the Western Isles, are involved.
Irrespective of the stage of the cancer, the goal is to enable a person to live as well as they can for as long as they can. Asking people affected by cancer to vocalise their concerns and play a more active role in decisions to live well with a cancer diagnosis is just the beginning; services will be required to think differently.
Transforming Care after Treatment is an ambitious programme and the outcomes could affect many of us personally and professionally. In 2014 a team from Edinburgh Napier University were appointed to evaluate this programme and we are using our experience across research, education and clinical practice to inform this work.
Our framework has been published in an early report (See Edinburgh Napier University Repository) and shared with our partners but remains a dynamic process. We have already observed how the programme has changed the way people can think and speak about cancer, and opened opportunities for people who may need support, to receive it.
Next year we will be able to share more results, specifically related to the use of different recovery approaches, the impact of this work on people with cancer, the changing attitudes of health and social care professionals towards cancer recovery, and the elements required to effectively tailor aftercare pathways to reflect the particular circumstances of an individual.
• Dr Susanne Cruickshank is senior lecturer in cancer nursing at Edinburgh Napier University