What we know about COVID-19 (Coronavirus) is changing day by day. We understand your concerns, and are doing all we can to provide the latest information and advice for people affected by mitochondrial diseases. We recommend bookmarking this page and checking it regularly for updates. Please note the information here is guidance only and is intended to supplement, not replace, NHS advice.
The UK and Northern Irish governments have announced that shielding will be paused on 31st July 2020. Welsh and Scottish governments have not yet announced similar changes, but they are expected to follow.
Changes to shielding guidelines are on the basis that the R number (the average number of infections that are produced by one infected person) and growth rate (how quickly the number of infections are changing day by day) continue to decrease, with the expectation that by August there will be such a low prevalence within our society that patients with mitochondrial disease will be at no increased risk from Covid-19 than they would be from any viral infection.
Due to a society-wide increase in hand washing and ongoing social distancing, the likelihood of picking up any infection should be greatly reduced.
We are aware that some organisations have circulated guidelines over the last few weeks which suggested that patients would be re-categorised according to the severity of their disease and some could be eligible to continue shielding. However, these proposals have not been adopted by our governments, which means that there will be no individual decisions made by clinicians to permit shielding to continue for some.
All shielded patients should therefore start preparing themselves to return to work/school, to resume responsibility for their own shopping and restart visits from carers if applicable. Although government food parcels will stop, the priority online supermarket delivery slots and pharmacy prescription delivery services will remain in place for the foreseeable future.
We realise this change is likely to cause significant anxiety for some patients with mitochondrial disease and we are committed to supporting patients through these uncertain times.
Although shielding will formally pause on 31st July 2020, it does not mean that life will return to normal. We are conscious that some patients with mitochondrial disease will be at risk of metabolic decompensation (worsening of symptoms) if they become unwell so we would urge patients to remain extra vigilant and to take sensible additional precautions where possible to minimise their risk.
- If you don't need to go out for work, school, supplies or your mental health, then don't. Whilst we are expecting the risk by August will be very low, avoiding close contact with others is still the safest option.
- Continue regular hand washing and insist all visitors to your home do the same. The Lily Foundation prepared some decontamination guidance for shielding households and much of this information remains relevant to minimise risk.
- We encourage patients to start having conversations with workplaces and schools to make sure you are comfortable with the environments you will be returning to, and to allow time for proper discussion/negotiation.
We understand that every patient is unique, and we would encourage families to try and assess for themselves what level of community integration they feel comfortable with. We will continue to work closely with the NHS Highly Specialised Service for Mitochondrial Disorders and other rare disease organisations over the next few weeks to gather more specific guidance for situations where patients still feel uncomfortable with school or workplace provisions and we are always very happy to look into individual cases and help where we can.
If at a future point in time the R number or growth rate starts to increase beyond an acceptable level (either regionally or nationally) we expect that the government will re-instate shielding of extremely vulnerable patients.
COVID-19 is contagious. It can cause a fever, dry cough and loss or change to your sense of smell or taste. Based on the information currently available, most of the reported fatalities have been in older people with pre-existing cardiovascular disease, diabetes and respiratory conditions. It would be reasonable therefore to assume that mitochondrial patients with pre-existing medical conditions could be at increased risk of developing more severe symptoms, but the vast majority would still have only a mild illness.
There are no specific vaccines or treatments available at the moment, so the advice for mitochondrial patients who are worried is to call NHS 111 which is running a COVID-19 enhanced service that will be the entry point for all individuals concerned they may meet the case definition for COVID-19. In the case of medical emergency, you should call 999.
If you are experiencing symptoms, the general advice for patients with mitochondrial disease would be to treat the fever with paracetamol (unless there is pre-existing liver disease), take plenty of fluids, self-isolate to prevent spread, and seek urgent medical attention if there are signs of shortness of breath / difficulty breathing (which tends to occur several days after the initial fever). For more information, see NHS guidelines.
The NHS are recommending that paracetamol is used in preference to ibuprofen to treat the fever and aches associated with COVID-19. People using ibuprofen to treat other chronic health problems should not discontinue use without first discussing with their doctor.
Symptomatic patients should call 111 for additional advice and should not be attending GP surgeries or hospitals unless via ambulance.