Wellcome Trust Centre For Mitochondrial Research

Coronavirus: latest government advice for extremely vulnerable people

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Coronavirus: latest government advice for extremely vulnerable people (1st June 2020)

Patients currently shielding should continue to do so until 30th June 2020 unless otherwise advised by their doctor. The rules on shielding for patients living in England were relaxed slightly on 31st May 2020 to allow some time outside (although this should be kept to a minimum and only if safe social distancing can be maintained). Updated shielding guidelines can be found here.

We recommend that children currently shielding should not return to school and that adults currently shielding should not return to work. (Government letters should provide adequate evidence of status).

Where possible, we recommend siblings of shielded children and children of shielded adults should not return to school before 30th June 2020 in order to minimise risk to their vulnerable family member.

Parents of shielded children and partners/parents of shielded adults should appeal to their employer to remain on furlough where possible, request that they work from home, or ask to be redeployed to a low risk role, in order to minimise risk to their vulnerable family member. Where employer’s insist on a return to the workplace, they must demonstrate they have followed the government guidance on working safely to minimise the risk to their employee, which in turn will reduce risk to their vulnerable family member.

In situations where members of shielded households return to the workplace or school, we recommend thorough decontamination prior to returning to the home. Where possible this should be done on leaving the workplace/school, otherwise at home, but before coming into contact with other family members. (We can provide further guidance on this if requested).

If you have received a letter or text advising that you are no longer required to shield and you feel concerned about this, you should contact your GP or mitochondrial specialist for specific advice.

Currently we can only provide guidance up to 30th June 2020, but please be assured that the Lily Foundation and the NHS Highly Specialised Service for Rare Mitochondrial Disorders are working together with other key stakeholders to provide specific guidance to the mitochondrial disease community as soon as new information comes into the public domain.

Protecting Patients with Mitochondrial Disease

To help control the COVID-19 virus and reduce the risk of infection, the government has ordered the UK population to stay alert and stay at home as much as possible unless for food, exercise, medical need or work that can’t be done from home. When you go outside the house, you should remain at least 2m (6ft) away from other people and adhere to strict hand washing guidelines as soon as you get home. While people in the UK are not being advised to wear masks, they are now being advised to wear ‘face coverings’ on public transport, in shops or other places where social distancing is difficult.

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 patient with mitochondrial disease and continue to adhere to hand-washing guidelines.

If you feel you are vulnerable or are shielding, seek support from friends, neighbours or 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).

NHS letters for extremely vulnerable people

Many mitochondrial patients will have received letters from NHS England or directly from their GPs. Patients who have received letters are considered extremely vulnerable and are advised to adopt the updated shielding measures until 30th June 2020, unless otherwise advised by their medical professional.

Eligibility letters are also important to:

  • prove entitlement to additional community support such as priority shopping delivery slots and access to the governments dedicated food and medicine delivery service.
  • provide evidence of extremely vulnerable status to employers to ensure adequate protection in the workplace.

The NHS Highly Specialised Service for Mitochondrial Disorders have recommended that patients with mitochondrial disease and the following conditions should have received letters:

  • Significant myopathy and/or respiratory muscle weakness
  • Patients who have metabolic decompensation with infection e.g. Leigh Syndrome
  • Cardiomyopathy, arrhythmia or heart transplant
  • Chronic kidney or liver disease or organ transplant
  • Stroke-like episodes or encephalopathy or epilepsy
  • Poorly controlled mitochondrial diabetes
  • Swallowing difficulties (dysphagia) where aspiration is a considerable risk
  • Severe gastrointestinal dysmotility due to mitochondrial disease
  • Severe neuropathy and/or autonomic dysfunction
  • Significant cognitive impairment

If you believe you should be classified as extremely vulnerable but have not received a letter, we suggest you urgently contact your GP to discuss this. If you need additional assistance, please contact alison@thelilyfoundation.org.uk

COVID-19 (Coronavirus)

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.

More information:

List of useful contacts

NHS guidelines

Government guidelines (England)

Government guidelines (Northern Ireland)

Government guidelines (Scotland)

Government guidelines (Wales)