Jackie Rodger, Lead Colorectal CNS NHS Tayside/TCAT Clinical Lead NOSCAN
Out-patient clinics in hospitals are bursting at the seams with people who have finished cancer treatment who have no signs of the cancer returning. It’s time to change how we approach cancer follow-up, as the current system is not sustainable.
Picture the scene. A patient who has had surgery for bowel cancer has their six-monthly appointment with their clinician.
In the past few months they have had a CT scan and still have not had any results, but of course, they think no news is good news and if there had been anything to worry about they would have been seen sooner.
Despite this, as their appointment has grown closer, their anxiety has increased. They’re feeling fine but wonder if they’re going to get bad news.
They walk into the clinic and find a registrar they have never met before. A very quick abdominal examination is performed.
The patient is asked about their appetite, bowel function and whether they have lost any weight. Everything is fine.
The patient asks the registrar about the results of their CT scan. The registrar rummages through the notes. “All good. We will see you again in 6 months.”
The patient leaves the consulting room feeling a bit short changed. The appointment itself took five minutes, but it took them two buses and an hour to reach the hospital, not to mention the weeks of growing anxiety as the appointment grew closer.
They didn’t get the chance to ask about help managing their bowel issues and wouldn’t consider asking the doctor for help getting support with the anxiety they’ve been experiencing since diagnosis.
All their worries about being told the cancer had returned were unfounded. This isn’t surprising.
In the 20-years I have been working as a colorectal nurse specialist I have yet to see a patient being diagnosed as having a recurrence at an out-patient consultation.
Fast forward to the present day. Following a period of service redesign after a successful TCAT project, elements of the Macmillan Recovery package are offered to patients.
All patients who have had potentially curative surgery are seen at a colorectal nurse specialist clinic where they are asked to complete a Holistic Needs Assessment while in the waiting area.
This means the consultation can be geared towards what is important to the patient at that time. Physical concerns such a bowel dysfunction can be assessed and appropriate actions recommended, social concerns can be addressed by signposting to relevant community based or third sector services.
This change in practice means patients appear much more satisfied with the consultation as it is much more patient centred.
As nurses we have been amazed at the number of community-based services that are available to support patients which we were previously unaware of.
There has been better collaboration, with links forged with third sector and local authority partners.
Specialist nurses have traditionally thought patients could only be supported by experienced nurses who had clinical expertise. How wrong we were.
The learning from the TCAT project has been that everyone has a role to play in supporting patients following completion of cancer treatment. Not one profession has the monopoly, with a more integrated approach being the preferred model.
Following implementation of a more patient-centred approach to cancer follow-up, we are in the process of taking this one step further.
Patients are still being seen in busy clinics for what is a relatively short consultation that for many patients is stressful and ultimately not useful, especially to those with no symptoms or worries about recurrence.
Thanks to TCAT and other similar projects elsewhere in the UK, there is now a recognition that automatically calling everyone who has finished treatment back to hospital at a pre-set time isn’t the best way to support patients.
We’re now redesigning the follow-up pathway so patients can get rapid access to a cancer specialist when they have worries or symptoms.
Patients will be educated in the signs of recurrence to look out for and know how to get urgent access to the specialist when required. Alongside this they will continue to have their CT scans and their surveillance colonoscopies at the appropriate times.
This new approach is about putting people with cancer in control.
It will also focus on making sure people know how to access the emotional, practical and financial support they need, alongside help dealing with the physical side effects of the illness.
This approach is known as self-management and many patients with other chronic health conditions do this.
Self-management is not a concept that secondary care professionals have been familiar with, but it’s one we need to get used to.
The evidence shows that shifting the balance from care being on the terms of the hospital, to being about what the person with cancer wants and needs, results in better patient experiences.
That means we’d be doing our patients a disservice if we do not embrace this change.
Watch former cancer patient Marian talk about why the new approach implemented in Glasgow was better for her: https://www.youtube.com/watch?v=_YyWleBV0Sw