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Coronavirus advice: updated 23/12/2020

Tier 4 Shielding Update

The government have reinstated shielding for patients living in Tier 4 and classified as clinically extremely vulnerable (CEV).

Initial categorisation as CEV will be communicated by letters/emails/text directly from central government based on previously held lists. In addition, GP’s can add patients to this list based on their own clinical judgement if they feel a patient has been omitted. This request can be escalated to a specialist if the GP is unsure.

CEV Patients are advised not work or attend educational settings. Other members of the household including partners, parents, carers, siblings can attend work/educational settings. CEV patients should stay indoors as much as possible, avoid shops, and avoid all but essential contact with others. CEV patients should still attend hospital appointments unless advised and can exercise outdoors. Full guidance can be found here.

Shielding letters act as evidence to your employer/educational setting of CEV status. They should also ensure you have access to free medicine delivery and priority shopping deliveries.  CEV patients can request a formal shielding note online if they need this (Shielding Letters)

We understand there will be significant concern with regards to partners/parents/siblings of CEV patients still attending work/education settings and we would advise that where possible, attempts are made to appeal to workplaces/educational settings to try and minimise risk. Failing that, we recommend decontamination guidelines are followed.

We realise that many adults and the majority of children with mitochondrial disease will not receive CEV status but may still consider themselves to be clinically vulnerable.

Our advice to families that remain concerned, is to follow the shielding advice as far as possible regardless of their official status, as we know many patients with mitochondrial disease take longer to recover from any infection than the general population.

We advise all members of the household follow strict social distancing guidelines and avoid touching things that people you do not live with have touched, including food and drinks. You should continue to regularly wash hands with soap and water for 20 seconds, avoid touching faces and clean frequently touched surfaces.

We realise this is again a very unsettling time for our mitochondrial community and the Lily team are here to support you all as best we can.

General advice for adult patients

The situation for adult patients is complicated. We understand a lot more about COVID now than we did in March and we also know that age and underlying chronic illness can contribute to the severity of disease, which may put some adult mitochondrial patients at increased risk of complications.

We advise that you take additional precautions to minimise your contact with others by staying home as much as possible and washing hands regularly and thoroughly.

We understand that supermarkets are still offering priority delivery slots to the elderly/extremely clinically vulnerable and we suggest, where possible, you reach out to friends and family who may be able to support you over the next few weeks.

Working during Covid

Employers have a legal obligation to consider and manage the risks to staff who are most vulnerable to infection (Disability Rights).

By law, all workplaces have to offer a COVID-safe environment, so if you feel uncomfortable with your employer’s provision to protect you in your current role, you need to tell them and give them the opportunity to address your concerns. You can also ask to be redeployed to a different role or ask to be furloughed. If this is refused, you may wish to request annual leave or unpaid leave depending on your financial situation. If you are still unhappy with your employer’s response you can contact employment support organisations like UNISON which provide very helpful advice surrounding employer’s legal obligations and employee rights (Coronavirus-rights-work).

If you are comfortable that your employer has put appropriate provisions in place to adequately protect you, you should continue to work but we advise mitochondrial patients to remain extra vigilant, always wear a mask, regularly wash and/or sanitise hands and minimise contact with others. On returning from work in public facing roles, we also recommend you follow our decontamination advice.

General advice for families of children with mitochondrial disease

We also understand a lot more about COVID infection in children than we did in March. Unlike adult cases, research studies from around the world have indicated that most childhood cases of COVID are asymptomatic or trigger a mild infection which rarely leads to serious illness. This is also believed to be the case in children with rare diseases like mitochondrial disease, where recorded cases have not caused a more serious illness than a normal winter bug.

All educational settings are now required to use PPE and follow strict protocols to minimse infection spread, so it is recommended that children continue to attend school.

There are, however, exceptions for a small minority of children with mitochondrial disease who are ventilated or are on medications for severe cardiomyopathy. If your child falls into these categories, you should have already received a letter from your consultant confirming your categorisation as CEV and advising you take additional precautions. If you have not, please contact them directly for specific advice.

The other frequently discussed paediatric ‘high-risk’ group includes children with severe immunosuppression, but this is rarely seen in mitochondrial disease and is not the same as a child taking longer to recover from infection (which is commonly seen in mitochondrial disease mito).

We appreciate that some parents will remain concerned about sending their child into school, as even the common cold can be challenging for some and recovery can be slow. If you have concerns, we suggest you approach your child’s school directly and try and work with them to find a solution. The social, physical, and developmental benefits of school are significant for all children, and it is believed that these benefits currently outweigh the risk COVID poses in school aged children.

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