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Shielding with a rare disease

Summarising 698 responses around shielding from people across NI living with a rare disease.

COVID-19 is a serious disease that has important consequences for many people living with rare diseases.  

In March 2020, people considered to be at the highest clinical risk from COVID-19 received letters from their medical team advising that they should:

  • stay at home at all times
  • avoid all face-to-face contact for a period of at least 12 weeks 

This 'protective-zone' is known as shielding and was updated so that shielding will continue until 31st July 2020.  Persons advised to shield in Northern Ireland includes, "people with rare diseases and inborn errors of metabolism that significantly increase the risk of infections".  This shielding advice was updated on 8th June 2020 so that people who are shielding may go outdoors while maintaining strict social distancing with members of their household, or if they live alone with one person from another household that is preferably the same person each time.  Following a decrease in observed community infection levels, from 6th July 2020 people who are shielding may meet up to six people outside their home as long as social distancing is strictly observed and form a support bubble with one other household.  NI direct advice on shielding

Our research explored some of the challenges around Shielding from people living with a rare disease and their carers.  Summary available under the COVID-19 tab at the top of this page or by this direct link:  Shielding

In particular people were asking about the practicalities of easing the shielding restrictions, requesting more information on local positive COVID-19 tests, improved public education and compliance for social distancing, clear regularly updated guidelines that are evidence-based, a 'trusted' source for obtaining PPE, and more information on returning to work and schools.  A particularly concern was how people with a disability that means they should not wear a face mask should keep themselves safe if the advice to shield is paused on 31st July 2020.

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