My partner was diagnosed with cancer at the end of February. It was as blunt as that. There were no warning signs. We both naively still felt young and fit, and yet suddenly there it was. An aggressive form of cancer that she had no choice or control over.

The impact of it, both psychologically and practically, was enormous. Immediately my partner was completely dependent on the skill and expertise of NHS staff. We could not have asked for more. Appointments were quickly offered and our questions patiently responded to. We were repeatedly given time with our Consultant Oncologist and Nurse to discuss the diagnosis, to consider the options for treatment, and to cry.

Very quickly however, the landscape changed. Covid-19 was rapidly advancing, and placing enormous challenges on the system. Although the staff continued to be just as compassionate and responsive in their interactions with us, they were less able to offer the consistent and dedicated, patient-centred service they aspired to. Cancer wards were given over to Covid-19 patients, treatment options cut, and operations rearranged or cancelled. There were reports in the media of the emotional consequences for oncology staff. This was epitomised for us when one of the Consultants apologetically informed my partner that he had never before had to tell a patient that her operation could be cancelled, without a Plan B.

As a clinical psychologist working in the NHS, it struck me that principles I recognised as the pillars of care were quickly being eroded by changes being imposed because of Covid-19. Three principles appeared to be particularly under threat. These are described within the Open Dialogue approach (Seikkula & Arnkil, 2014) as Flexibility and Mobility, Psychological Continuity, and a Social Network Perspective. Open Dialogue is a service-wide intervention that has had such successful outcomes in Finland that it is now being trialled around the world. Although it is often written about in relation to psychosis it has wider applicability (Razzaque, 2019) and is currently being piloted in NELFT NHS Foundation Trust with Accident and Emergency patients for example. These three principles were clearly embedded in the oncology service, but were being challenged by the tidal wave of change enforced by Covid-19.

Firstly we noticed that the capacity for Flexibility and Mobility, that is a person-centred, needs-adapted approach, was restricted. Time had initially been patiently spent with my partner discussing options and exploring potential implications. This had allowed her to feel more in charge of a disease that had threatened to rob her of any sense of control. Suddenly treatment choice was stripped back to ‘essential care’. This wore away the delicate sense of empowerment that had previously been so thoughtfully nurtured by the team. My partner’s operation was changed, then relocated, and subsequently postponed.

Interactions with staff also became less personal. Information about treatment was still communicated caringly but with fewer options available and little room for debate. On one occasion while waiting for a follow-up procedure, my partner was asked to sit two metres away with her back to the clinicians. The stress in the system was palpable, through barely disguised conversations among hospital staff about the lack of equipment, uncertainty with procedures, and even fear of death.

The Psychological Continuity of care, or the organisation of a consistent group of overseeing clinicians, was also impacted. Staff who my partner had felt so engaged with at the start of her care were suddenly less available. Phone calls replaced face-to-face consultations. Keyworkers were busy with other tasks. And the Consultant in charge of the operation repeatedly changed. The Consultant who finally carried out the procedure was only briefly able to meet my partner for the first time on the morning of the operation.

The principle of the Social Network Perspective was another casualty of Covid-19. Initially I was fully involved in the discussions around diagnosis and treatment. Quickly however, as social distancing became the new normal across society, family members’ access to services was dramatically restricted. I was not allowed onto the ward at any point, including at discharge when my partner, exhausted after the procedure, struggled to take in the information she was given about post-op care. As the operation had taken place on a temporary ward, the usual educational leaflets were not available, further compounding the problem.

It is important to emphasise that the dedication of staff throughout was an example to my partner and myself. We have both worked for the NHS for more than twenty years and were left feeling incredibly proud of this institution. There were so many warm, human touches that lessened the blows dealt by the arrival of cancer and Covid-19. Nevertheless this experience has caused me to reflect how I, as a clinical psychologist, might keep hold of fundamental principles of care that are under intense threat.

Clearly as clinical psychologists, we are not on the ‘frontline’ where the challenges from Covid-19 are colossal. Our work nevertheless will have been changing dramatically. It will now be difficult to offer the level of Flexibility and Mobility that we previously prided ourselves on. So how do we hold on to some degree of patient-centred care at this time? How do we relate to the person behind the mask, empathising with their fear and interacting on a warm, human level, while observing the current rules for distancing? Something my partner and I found most helpful was to be given the time to have the changing situation, with all its uncertainty, explained to us in a composed and containing manner. Although choices were denied due to the risks imposed by the virus, when the uncertainty was calmly shared with us, we felt unsettled but also reassured. Fundamental changes were happening, but there was still a plan in place, and we would be informed of any alterations by staff who were holding us in mind.

Regarding Psychological Continuity, technology may help to bridge the gap. Being able to speak to keyworkers and other staff by phone, when it was no longer possible to attend clinics in person, was vital. But hours were also spent waiting in phone queues, only on occasion to be cut off. Efficient telecommunications systems including safe videoconferencing facilities are therefore essential, which we can argue strongly for. Beyond this, we can develop systems that ensure that technology is used thoughtfully, with the person held in mind. We found that information provision and follow up was often lost. It seems that in times of crisis we attend to threat and easily leave behind the basic information that is still important to those in the midst of distress. Continuing to provide knowledge and guidance about procedures and systems that are obvious to us, could be one of the most important services we offer. Suitable follow up and attention to endings are also essential if we are to avoid fostering feelings of abandonment, which would potentially replay past patterns of interaction that our work is seeking to move away from.

Technology can also be key in maintaining a Social Network Perspective. My partner found it invaluable to video-call us on her phone after the operation, particularly during the long uncomfortable night. The open nature of the ward and a desire not to disturb others hindered this at points however. We may therefore need to think carefully about how to facilitate the use of technology to involve families and social networks, who could easily be overlooked in the current situation.

It will also be important to consider how to foster liaison between service users at this time of social distancing, to allow new social networks to be developed. Despite the tremendous support given to my partner from family, friends and staff, she felt alone on the journey at points. Some of the strongest affirmation came from others who had been through similar experiences. And some of the most helpful information came from a fellow patient who she shared phone numbers with on the ward. How do we sustain and enhance peer support at the current time? Can technology be used to develop virtual spaces, now that facilitating groups may no longer be possible?

There are so many questions to consider at this extraordinary time. But pausing in the chaos, acknowledging our fears, and recognising the challenges posed to our fundamental principles by Covid-19, looks like a good place to start. We can then start to foster these pillars of care in alternative ways, within this sharp new context in which we find ourselves.

The author is a Clinical Psychologist and ACP-UK member.

References

Razzaque, R. (2019). Dialogical Psychiatry: A Handbook for the Teaching and Practice of Open Dialogue. Omni House: UK.

Seikkula, J. & Arnkil, T.E. (2014). Open Dialogues and Anticipations: Respecting Otherness in the Present Moment. THL: Tampere.