WE know the NHS is going backwards on key performance targets. This raises concern for patient groups, such as those with long-term spinal cord injuries (SCI) who, prior to the pandemic would have a yearly, in-person, monitoring appointment, regardless of their clinical need. 

These appointments are crucial because, as those with SCI age, they are more prone to developing life-limiting secondary conditions. But it’s not just physical factors a spinal team should be assessing, as living with a disability or 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 in-person appointments for decades (my injury was in 1989) to check for and manage secondary conditions.  

These appointments happened no matter what my clinical need at the time, as they were for monitoring purposes. Physical examinations would be taken along with scans, and I would get to speak to various members of the team. Although the appointments might take up half a day, I used to feel like I had my yearly MOT.

When I received my latest annual appointment, I was surprised to see it was by phone for 10 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. How could I tell my consultant about the development of my kyphosis when he couldn’t see what I was trying to describe over the phone?

Surely these 10-minute phone appointments weren’t replacing the half-day monitoring appointments.

Using freedom of information requests, I asked several of the major Spinal Cord Injury Centres (SCIC) in England about the regular appointments 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.” 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 patient’s 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 “alternative model of care” — as one trust described it — 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 then means secondary complications could get missed or the management of conditions already present could be compromised. 

Sarah* is a long-term patient at Stanmore and has various complications due to her initial SCI. She 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, Sarah has not had a face-to-face appointment for over five years.

Remote methods and the risk to patients, especially those with complications, has been shown in primary care, when research led by 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 has not been getting his in-person appointments at Pinderfields. 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. As the NHS outlines, SCI patients should be getting regular follow-up to prevent and manage secondary conditions.

Using remote methods as a form of triage could miss those in need and as indicated in the primary care research, have the potential for serious health consequences and harm.

Ruth F Hunt is a columnist and freelance writer. *names changed to protect confidentiality