The best made plans….need patient involvement!
The work of the Scottish Government’s Cancer Prehabilitation Implementation Steering Group continues, with working groups on nutrition, psychological health and digital support moving forward and identifying practical approaches to implementing prehab guidance into practice. A key part of this work is understanding the patient perspective and work is underway to try and address issues that have been raised by patients in the past that could impact significantly on potential benefits.
One of the greatest concerns is how patients can fit in prehabilitation whilst also undergoing and attending the necessary tests, treatments and appointments that happen in the run up to and after a cancer diagnosis (often described as the care burden). Understanding the most effective way to offer support that truly communicates the purpose of the interventions on offer and helps people engage as much as they can needs to be explored and co-developed in a meaningful way. This issue comes into sharp focus when we consider the suitability of digital solutions for people less adept at using contemporary technology. Understanding recent changes in on-line communications in vulnerable population groups may be insightful, but acknowledging and addressing the needs of the digitally challenged and/or excluded in the context of health and care must be led by patient experience.
Previous work undertaken tells us that prehabilitation must be communicated in a way that attaches value for example, ‘a necessary part of treatment’. Patients are also supportive of the basic content (exercise, nutrition, wellbeing and lifestyle, including smoking cessation and alcohol reduction) but they say that prehabilitation plans must be personalised and co-produced, reminding us that the purpose must be explained in terms that are meaningful to them as individuals. For example decreasing length of hospital stay is not always good news to the patient who appreciates the care and security of the NHS environment. The value of supporters and the enabling people to hear from those who’ve already been through cancer prehabilitation and care has also been communicated. However, what must be explored in more detail is how we help people to understand why prehabilitation is right for them including those who already feel ‘healthy enough’ or ‘too weak to take part’. We must also understand consider the timeline of communication; what is communicated, when and by who? Finally we must really explore service design and potential benefits and burdens of a comprehensive program delivered in a central location vs individual elements delivered in local communities vs a digital offer that could be comprehensive at in an individual’s home. These are just some of the questions which the implementation group hopes to better understand through a series of engagement exercises, online feedback and evaluations.
To answers these questions (and potentially gain insights into many more!) The Scottish Government’s Cancer Policy Team together with the Health and Social Care Alliance Scotland will hold a series of focus groups over the coming months. They will also continue to review the experiences of those who have shared stories about cancer services on Care Opinion and look to evaluation data from prehabilitation trials, pilots and services to better understand how they and the way they are designed impacts individuals and their supporters.
If you’d like to share an experience of prehabilitation, cancer services or any aspect of a recent interaction with health or social care, you can do this through Care Opinion by going to their website https://www.careopinion.org.uk/ or call 0800 122 3135.
If you’d like to attend one of our focus groups on prehabilitation, then please email firstname.lastname@example.org or phone the ALLIANCE switchboard on 0141 404 0231 where Jacqui or Mathew will be able to tell you more.
Debbie Provan, Clinical Advisor Cancer Policy