Wellcome Trust Centre For Mitochondrial Research

Coronavirus: Registering for support as an extremely vulnerable person

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Coronavirus: Registering for support as an extremely vulnerable person (4th April 2020)

It is possible to register on the government website for support if you live in England and have a medical condition that makes you extremely vulnerable to coronavirus. The situation in Scotland, Wales and Northern Ireland is different but similar schemes are being put in place. For all health services it is crucial to work closely with your GP.

The NHS Highly Specialised Service for Rare Mitochondrial Disorders has prepared a letter which is going to the GP (with a copy to the patient) of all patients under its care which highlights mitochondrial patients who are extremely vulnerable. This letter has also been shared with other clinicians who care for patients with mitochondrial disease not seen in the Highly Specialised Service.

The letter can be viewed here.

For those patients not looked after by the Highly Specialised Service, they should contact their hospital consultant and request that a confirmation letter is urgently sent to their GP. The Lily Foundation can help with this if required. Please contact alison@thelilyfoundation.org.uk.

Protecting mito patients through shielding

We continue to recommend that mitochondrial patients with additional health complications adopt the government’s shielding guidelines . These include avoiding all non-essential contact, even with members of your household. Other household members do not need to adopt shielding measures, but they should strictly follow the government’s stay at home guidance.

Visits from people who provide essential support such as healthcare, personal support or social care should continue, provided all visitors adhere to strict hand washing guidelines and, if close contact is required to deliver care, they should wear appropriate personal protective equipment. Care workers must stay away if they start showing any COVID-19 symptoms, and patients should make a list of alternative people who can help with care if their main carer becomes unwell.

Although schools have closed for many children, we appreciate some households may have key workers in front-line services, so children may still be at school. In this situation, we suggest where possible that the key worker and children still attending school avoid all non-essential contact with the shielded mito patient and continue to adhere to hand-washing guidelines.

If you feel you are vulnerable or are shielding, seek support from friends, neighbours and local volunteers informing them that you or a family member with mitochondrial disease is shielding. Ask them for help with shopping and other urgent supplies, posting mail, or just checking that you’re OK.

Any items delivered to you should be left on your doorstep and physical contact kept to a distance of at least 2m (6ft).

Coronavirus (COVID-19)

COVID-19 is contagious. It causes a fever, dry cough and in some instances a subsequent severe lung inflammation and respiratory failure. Based on the limited 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 mito patients 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). 

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.

More information: 

NHS guidelines

Government guidelines (England)

Government guidelines (Northern Ireland)

Government guidelines (Scotland)

Government guidelines (Wales)

Lily Foundation useful contacts