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A risky strategy for spinal cord patients?



Ruth Hunt, a journalist and columnist who lives with spinal cord injury, on what she believes is a concerning reduction in access to in-person appointments.

In-person monitoring appointments for long-term patients with a spinal cord injury (SCI) have now, in many cases, been replaced with remote calls, either by phone or video; meaning many of those with substantial needs are not getting a regular face to face appointment with their spinal team putting them at risk of harm.

Ruth Hunt

Using remote methods, such as phone or video calls for appointments with doctors is something we have seen in primary care. But it hasn’t stopped there, such appointments have seeped into secondary services, such as spinal cord injury centres (SCIC).

This has caused alarm as the research regarding remote appointments in primary care has revealed serious safety concerns for some patients. Could this be the case for those using secondary services like those living with a spinal cord injury (SCI)?

The care for those with long term SCI had a monitoring appointment in-person every year (or sometimes every two or three years) at its core. These in-person appointments are crucial as such patients are prone to developing life-limiting secondary conditions. But it’s not just physical factors a spinal team looks at, as living with serious disabilities can also take a heavy toll on mental health.

The NHS Care Pathway for Spinal Cord Injuries calls it: ‘Lifelong follow-up of people living with SCI to prevent and manage SCI related complications.’

The secondary conditions, the NHS refers to are highlighted in ‘Chronic complications of a spinal cord injury’ where the authors say:

“Common secondary long-term complications after SCI, including respiratory complications, cardiovascular complications, urinary and bowel complications, spasticity, pain syndromes, pressure ulcers, osteoporosis and bone fractures.”

When phone and video communication became possible this was a genuine choice. Patients who couldn’t attend in-person appointments at their spinal centre, could speak to their consultant remotely.

The pandemic accelerated the use of these remote methods due to social distancing and lockdowns. But now the NHS has fully reopened we have found these remote methods of communication, like primary care, are now the dominant methods a patient gets to communicate with their consultant, rather than the in-person appointment.

I have attended these annual appointments for decades to check for and manage secondary conditions. In the early years (my injury was in 1989) I thought taking a morning or afternoon out of my day each year for these appointments was a nuisance, mainly because of how long it took to travel to my nearest centre.

When I received my latest annual appointment, I was surprised to see it was a by phone for ten minutes, and that my next appointment in November 2024 was also by phone.

As my injury was so long ago, I now have a clutch of secondary conditions, including osteoporosis and kyphosis. I wondered how I could tell my consultant about the development of my kyphosis when he couldn’t see what I was trying to show him.

Were these ten-minute phone appointments really replacing the half-day monitoring appointments?

Using Freedom of Information requests, I asked several of the major SCIC in England about the yearly monitoring appointments that were in-person for long-term patients, and whether these appointments had now changed in how they were delivered.

From the responses I received from five Trusts, it now appears, rather than their long-term needs, another clinical decision takes place first as to whether these patients are seen face-to-face. As one Trust described; The type of appointment offered will be dependent on the clinical need of the individual patient.

They all appear to be using phone/video calls first, as a form of ‘triage’. As another Trust said: ‘If they have a virtual consultation and from that consultation it appears they need to be seen face to face, that will be arranged.’

Of particular concern is long-term patients, who could go on to develop secondary complications if they are not already present.

But for this cohort, a different Trust said: ‘Long term annual follow ups are now offered as phone consultations if deemed appropriate by the clinician or at the patients request.’

With just a head and shoulders view, or with that view removed completely by just using a phone call, it is hard to understand how a full assessment can be carried out.

This ’triage’ is an extra barrier to receiving care and might mean long-term patients fall through what is left of the safety-net.

If this remote model of care has become standard then it will be much more difficult for long-term patients to get a face-to-face appointment with their spinal team.

This means secondary complications could get missed or the management of conditions already present could be compromised.

This is the concern for Sarah who as a long-term patient has various complications due to her initial SCI. She attends Stanmore and said: “I am having multiple problems, so I was really worried when all I was given was a phone-call. I didn’t end up getting a face-to-face appointment.” As a result of this Sarah has not been physically seen by a consultant for over five years.

Remote methods and the risk to patients, especially those with complications, has been shown in primary care, when research (lead author Dr Rebecca Payne) was undertaken in response to concern about patient safety.

With such remote appointments now established in various secondary services, there is an urgent need for evaluation as to how it is working, and whether patients with the most needs are at risk of harm.

That could be patients like Stephen, who as a long-term SCI patient at Pinderfields has not been getting his in-person appointments.

Stephen says: “I think it’s now up to me to shout when I need something, although increasingly it feels like nobody is listening.”

If patients are having to make a fuss to try and get the care that should already be provided to them, we need to step-back and question why.

We must think again about what we are providing to these long-term patients, in case such remote appointments, as indicated in the primary care research, have the potential for serious health consequences and harm.