Treatment and care

COVID-19 has presented an ongoing challenge for patients and healthcare professionals.

In the early weeks of the outbreak, the main objective was to maintain access to urgent stem cell transplants. However, by June, following updated guidance from NHS England, stem cell transplant centres were able to begin work to safely restore capacity. Many stem cell transplant patients were advised to shield, which led to changes in how they access treatment. In this context, we asked patients if they were aware of the next steps for their treatment, if they had been able to contact their healthcare team, and if most of their outpatient appointments were going ahead.  

Positively, despite the disruption, communication with patients appears to be well co-ordinated by healthcare teams as 93% of respondents knew the next steps in their treatment, and of those who have tried to contact their healthcare team, the majority have been able to reach them as usual (81%).

Outpatient appointments

During recovery after a stem cell transplant, patients can experience a range of physical and psychological late effects (or long-term complications), which may be ongoing, severe and life-threatening.  

89% of respondents had already received a stem cell transplant which means follow up appointments, and particularly blood tests, will form an important part of monitoring their progress. This would usually take place in outpatient clinics. 

I am nearly 18 months post-transplant and I only have to attend clinic every four weeks for bloods to be taken.

Patient survey respondent

The response to the COVID-19 crisis has seen an unprecedented effort to keep vulnerable patients safe, while maintaining their access to services.  

As the NHS moves into the restoration and recovery phase, it is important that patients feel able to access the full range of services they need. When asked about concerns for the next three months, it became clear that a number of respondents believe that the impact of COVID-19 on services could make it less likely that they would be able to access the treatment they needed in the next few months. 

Remote appointments

While the number of face-to-face appointments has increased since our last survey in April 2020, from 24% to 31%, most respondents, 44%, are having most of their appointments with their healthcare team via telephone.  

Only 6% reported having digital appointments. As such, a remote appointment seems to predominantly mean speaking to a clinician over the telephone.  

60% of those who have experienced a remote appointment stated that they were able to access the care they needed from it.  However, face-to-face appointments were still seen by numerous respondents as a preferred option, as many side effects of transplant can only be picked up in person.

It’s harder to be able to be seen in a way that’s comfortable to know if my concerns are properly met.

Patient survey respondent

Greater access to video calls, to carry out remote appointments, was suggested by some respondents as being a useful option to have on offer, suggesting that this is not the norm despite the move to telemedicine.

I have to say that the telephone appointment was a little more difficult than I had imagined it would be. Because the Dr was referring my records on the computer while we spoke the conversation was very disjointed and didn't flow easily. A facetime appointment would probably be easier but I'm not sure if that will be an option in the future.

Patient survey respondent

Considerations for the future and telemedicine

As seen in the responses, outpatient appointments are an important part of care for patients. With the move to remote appointments, evaluation is needed to ensure that patients are still able to access all the care they need. Patients should be proactively offered support to meet their physical, psychological and practical needs.  

Thorough evaluation will be important to strike the right balance between patients who can continue having remote appointments and those who need to be seen face-to-face for examination. It is especially important that safeguards are in place to ensure that patients who are unable to or are not comfortable engaging digitally.  

Telemedicine also has specific infrastructure and resource implications for services, and as such this must be properly funded to ensure all transplant centres are able to offer this where they would like to.

Face to face consultations with doctors and nurses would of course be preferable long term, however video consultations would be the next best thing whilst there is still a COVID threat. It would be good to get systems in place to allow for this.

Patient survey respondent