Given the suspension of all new patient clinics across the HSE people with symptoms suggestive of MS may experience delays in getting seen by a neurologist and accessing appropriate investigations. There may be situations where those presenting with the most severe clinical events, such as transverse myelitis or bilateral optic neuritis still need to be seen urgently and treatment given.
We recommend that virtual /telemedicine clinics should continue for patients, and that facilities should be made available at all sites to provide face to face meeting for those with significant / clinically concerning symptoms, taking into account the restriction surrounding social isolation, and balancing these requirements with the need to provide an accurate clinical diagnosis and appropriate management plan.
People with MS on DMT:
Current advice is that people on DMT should continue their treatment. Neurologists starting people on Alemtuzumab, Mavcenclad, Ocrevus or Rituximab should be advised to consider alternative treatment until after the peak of COVID-19 infections has passed. If a patient is due retreatment with these agents they should be advised to defer, especially if B/T cell subsets remain low.
People established on treatment should continue to have their safety blood monitoring performed and safety MRI scans coordinated by MS nurses, especially for the Tysabri treated population should also be maintained.
Current recommendations suggest discontinuing DMT in the case of a person with MS testing positive for COVID-19 and restarting after three negative tests.
MS patients will require ongoing access to their usual neurology teams to report new symptoms and access appropriate advice for relapse management to prevent Emergency Room presentations. We strongly recommend that each hospital has a point of contact for their patient population via an MS nurse or Neurology team member and it is recommended that this is maintained.
SUMMARY for RRMS
Telephone triage and consultations by MS Nurses, SpRs and Consultants is essential to enable appropriate management of MS, including the provision of home based care for relapses in the community. However, access to Intermediate Care facilities will be required for those with more severe exacerbations for appropriate treatment.
SECONDARY PROGRESSIVE MS / HIGH DISABILITY
This cohort will require ongoing surveillance by the MS nurses (or Neurology teams where there is no MS nurse in post) to ensure that care does not break down within the community. A prioritisation exercise will be required and regular telephone follow up with the at risk patients required to facilitate rapid transfer to a care facility on a temporary basis if required. Those with intercurrent illness (non COVID) may need admission to an Intermediate Care Facility within the community.
Triaging these patients will come within the remit of the MS Nurses / Neurology team if there is no nurse in post
Patients with Parkinson’s disease and parkinsonism make up the vast majority of the movement disorders population and have the highest potential for difficulties in the context of the viral pandemic.
Remaining patients with tremor disorders, dystonia, Huntington’s, tic disorders (who are not treated with DBS or BTX) are less likely to encounter any pandemic related breakdown in the absence of viral infection. This cohort will need to be followed as required (crises managed by the neurology team) and for those who are stable, their management can be be picked up when services resume.
Some will develop minor difficulties, the majority of which could be dealt with by tele-clinics and provided by nurse specialists where possible, or the existing neurology team (SpR) where feasible.
The general PD cohort by virtue of age will inevitably make up a large proportion of the very sick COVID cohort with a high mortality rate. Neurologists are likely to be asked to become involved in discussions around resuscitation.
Where possible, advance care directives should be put in place.
The most vulnerable group in the movement cohort otherwise are those who have high care requirements currently delivered at home. Hospitalisation is unlikely to be an option in the event of loss of carers and this burden will fall on families where available, with the inevitable risk of clustering of infection within families where this is happening.
These patients will require access to a local care facility until the community care can be re-established. The Neurology teams in each hospital, along with the local GPs and voluntary organization, will need to identify these patients to reduce the risk of admission to the ED.
Those at greatest risk are patients with deep brain stimulation in situ (PD, ET, dystonia) who are due a battery change.
Battery failure at best will be associated with acute deterioration and significant disability, and at worst a dystonic or parkinsonian crisis.
Efforts are ongoing to find an Irish site to perform battery changes. Update to follow.
Summary of the RISK for PD and Related Movement Disorders
For vulnerable PD patients and those with related conditions, ongoing engagement by telemedicine will be essential and should be made available at all centres. This should be undertaken by the hospital based neurology teams, with coordination by the PD nurses where available.
Early engagement with local services will be essential to identify facilities for care management for those who can no longer remain safely at home and intermediate care facilities for those with acute /intercurrent illness.
Epilepsy services in Ireland are well integrated with specialist services in Dublin, Cork and Limerick, and excellent nurse provided services .
Those with epilepsy are vulnerable as febrile illness can exacerbate seizure disorders, and those with intellectual disability and complex epilepsy are particularly at risk.
The epilepsy nurse advice line is essential to management of those with epilepsy, and these services must be ring fenced during the COVID epidemic.
Those with epilepsy who are advised to self-isolate pose a particular risk. Irregular seizures, particularly tonic-clonic, or any that could cause harm, can leave a self-isolated patient vulnerable to undetected seizures, and recovering on their own.
Patients and families should be advised to notify others if they are self-isolating.
Some patients with epilepsy have other conditions that predisposes them to immunosuppression and some medications are immunosuppressive - these persons will have a lower immune system to fight infection.
Those at risk should be contacted by their local epilepsy service if this applies.
Medication compliance is essential in epilepsy management. Services such as local volunteers can be recruited - this can be coordinated by the Epilepsy nurse. Outreach clinics (including those provided to intellectual disability services) should continue using telemedicine at each centre.
Intermediate care facilities may be required for those with intercurrent illness – these should be sourced locally in collaboration with the Epilepsy services
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