Families caring for a seriously ill child must not be forgotten

The majority of children currently considered extremely clinical vulnerable to coronavirus (COVID-19) will be able to be removed from the shielded patient list, according to the latest government announcement. However, many families that Rainbow Trust supports expect their child to remain on the shielded patient list where they fall into the category of children who receive specialist care in hospitals, such as those receiving cancer care or those at risk of severe infection due to an immunodeficiency.

The changes were announced after evidence from paediatric clinicians showed that COVID-19 poses a low risk to most children and young people, and many children who were initially identified as being clinically extremely vulnerable will no longer be considered at highest risk. Evidence from the Royal College of Paediatrics and Child Health (RCPCH), working with specialists in paediatric medicine, has shown that only those with the most severe conditions should now be considered clinically extremely vulnerable. Children and young people who usually only see their GP are considered very unlikely to need to continue to shield in the long term. Specialists and GPs will be asked to contact shielding children and their families to discuss their situation over the summer, and children will only be removed from the shielded patient list following consultation with their family.

Rainbow Trust’s Director of Care, Anne Harris, said,

"As further changes to the guidance on shielding come into effect, and all shielding is anticipated to be paused next month, it is vital that families caring for a child with a life-threatening or terminal condition are not forgotten.
Many will welcome the opportunity to spend time with friends and family after months of physical isolation but will feel extremely anxious about the risk of infection if they leave the house. Parents will need medical advice specific to their child’s condition in order to make decisions for their household, including adults expected to return to their workplace and healthy siblings expected to return to school.
We are aware of families who have already been advised that their child should continue to shield until the end of the year, and other families report feelings of confusion and uncertainty because of the way that communication has been handled so far. We urge the government not to forget this group of seriously ill children and their families simply because they are small in number and less visible in society."

Rainbow Trust Family Support Workers are continuing to provide families with emotional and practical support, either virtually or face-to-face where social distancing allows. A mother supported by Rainbow Trust, whose son has been shielding, told her Family Support Worker:

"With the announcement that shielding restrictions for medically vulnerable children are changing we have been thinking about how this will affect our family. We are waiting to speak to our son’s clinician to see if he will still need to be shielded. I am anxious at the thought of it lifting as he is still extremely vulnerable due to his condition and respiratory problems.
I worry that without the shielding in place people will expect him to be going to school, and that other people will think that they do not need to be careful around him and still protect him from the virus. Without the shielding in place I worry about his siblings being back at school during localised breakouts. I would love for us to all get back to normal but I worry about my sons health."

Shielding guidance for people of all ages was relaxed on 6th July. Shielding families may now, if they wish, gather in groups of up to six outdoors and can form support bubbles with another household if their household is headed by a single parent. From Saturday 1st August, the guidance will be ‘paused’ altogether, and ‘clinically extremely vulnerable’ children and adults will no longer be advised to shield by the government. The shielded patient list will be continued, however, in order to provide new advice in the event of localised outbreaks.

Read the government’s updated shielding advice here. Read the RCPCH guidance here.

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