Today Kathleen Gillett of Dorset Macmillan Advocacy argues that advocacy support has a role to play in breaking the negative cycle of cancer care:
The Patients Association has chaired a working group on ‘Transforming the cycle of cancer care’.
The working group argues that ‘currently there is a negative cycle in cancer care, where a short-term approach leads to rising costs in cancer, makes fewer resources available, provides inadequate patient support which re-enforces the need for a short-term ‘just managing’ approach.’ It proposes ways to break the negative cycle.
To address this challenge, The Patients Association and Bristol-Myers Squibb are working alongside experts and patients from across the cancer space to identify new models of service delivery, showcase best practice, and provide real improvements in patient care.
The report discussion includes sections and recommendations on:
Identifying, incentivising and implementing best practice
Developing effective prevention strategies
Implementing best practice in the early diagnosis of cancer
Delivering timely access to treatment
Engaging patients in delivering innovative care pathways
To my mind the report blurs the issue of patient engagement and involvement in service improvement and that of individual patients who are ‘engaged’ and active in their own healthcare journey. Both are important and worthwhile while distinct from each other.
I think that the argument for ‘engaging patients in delivering innovative care pathways’ reads like a explanation of the benefits of independent advocacy support:
‘Educating patients with cancer about self-management and empowering them to play an active role in the decision-making process was considered to likely result in an improvement of patients’ knowledge, understanding of their condition, adherence to treatment and engagement in their healthcare. Whilst not all patients will want to play an active role in their treatment and care, it is important to provide patients with the opportunity and the choice to make their preferences clear and also tell us what a “good” treatment outcome looks like for them.
‘The Working Group described these users as “activated patients” who can lead the charge for the adoption of best practice care. According to Working Group attendees, the evidence suggests that “activated” and informed patients use an average of 20% fewer resources than less informed counterparts.’
Advocacy support is unfortunately still relatively unknown and it is not uncommon to read policy reports in both health and social care spheres that appear to describe it and recommend it without ever using the term. I believe that independent advocacy support and particularly that provided by peer volunteer advocates has a role to play in breaking the negative cycle of cancer care. It can certainly be preventative and facilitate timely access to treatment in addition to empowering patients. I would like to see it recognised as an integral part of the cancer care pathway, recognised as best practice and implemented nationally.
Kathleen Gillett, Coordinator Dorset Macmillan Advocacy