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Before the pandemic, we had 13 nursing clinics a week seeing patients face to face. This went down to just one by late March.
Clinics via telephone resumed on 23 June, but capacity remains reduced due to the loss of a few members from my team because they have been affected by Covid-19 or they have had to shield at home.
With epilepsy specialist staff being redeployed elsewhere, we were only able to see urgent patients. Our secretaries have been phoning patients due to be seen under normal circumstances and giving them guidelines on how to manage their epilepsy.
Patients either fall into a stable or severe category in terms of their seizures – it’s as simple as that. People with worsening seizures have been ‘seen’ in urgent telephone clinics provided by a nurse or neurologist, but not necessarily the clinician they would normally see.
This is far from an optimal or long-term solution, as people with epilepsy really need continuity of care. This is the model that we’ve always operated here in Wolverhampton and are trying our best to get back to.
The issue of SUDEP (sudden unexplained death in epilepsy) is front and centre of it all – it’s been harder for people with worsening seizures to get advice.
Referrals have come down. I think this really reflects the national situation seen in lots of clinical areas, not just epilepsy, or indeed neurology in general. There could be many reasons for this, from people not wanting to bother the NHS during the pandemic, through to fear of being asked to come into hospital and contracting Covid-19.
We would expect to receive around 330 new referrals in a normal three-month period, but with services suspended for 13 weeks, we have had just 120. This lower figure probably reflects the redeployment of many of our neurologists as well.
“We’re still trying to pick up this backlog and it’s too early to know what impact this will have had”
So, although smaller than it would be if we suspended the service for three months under normal circumstances, there is still a backlog of cases to get through. Now, of course, new referrals are beginning to return to pre-Covid levels.
We’re still trying to pick up this backlog and it’s too early to know what impact this will have had. But our service is still open for business for new referrals, so patients shouldn’t hesitate to call.
I find patients are generally really grateful to have contact with us and know that there is a service still there. However, it’s a really mixed bag as to how Covid-19 has affected them.
Some are not at all worried but then some have been extremely concerned, taking steps to shield themselves, despite government guidance.
Having now spoken to hundreds of patients remotely, mainly by phone, the true effect of the pandemic on people with epilepsy is starting to emerge. I would say that the majority have seen an increase in anxiety levels with some people experiencing more seizures as a result (anxiety can be a trigger for seizures).
We also have a sizeable number of people with non-epileptic attack disorder, with or without comorbid epilepsy. These people have been more markedly affected, as by definition their psychologically-based seizures are much more likely to become fragile in association with major lifestyle disruptions.
When it comes to talking to new patients over the phone, I sometimes find it very hard to fully understand what is going on. I recently spoke to someone with mild learning disabilities and they really struggled to tell me anything.
Being able to see people face to face allows for non-verbal communication to come into play and can make such a difference. In terms of people with learning disabilities, we often have to talk to several people – their families and their carers – and we’re all in different places.
Unless everyone has Microsoft Teams, which isn’t always the case, then a half-hour slot can easily turn into two hours as we have to ring people individually. We just don’t have the time to do this, however much we want to.
However, we have now organised our specialist learning disability and epilepsy clinics to run remotely using Teams. Our fantastic administrative support have ensured that relatives and carers are able to access the system and it has been working really well.
More generically, we have begun to audit patient’s wishes in terms of preferring a telephone, video or face-to-face style appointment in future. Very few seem to be opting for video.
Maybe a third are requesting face-to-face when it is safe, but the majority seem to prefer to be contacted by telephone, something which has certainly surprised me, particularly as we operated all of our clinics in the community to minimise patient’s travel and the need for them to try to get to the main hospital site.
The most important thing has been getting staff off the wards and back to their normal jobs. We now have to continue to keep people safe and work through the backlog to resume normal service as quickly and as safely as possible.
Phil Tittensor is consultant nurse for the epilepsies, The Royal Wolverhampton NHS Trust